ALL AGE LEARNING DISABILITY SERVICE HIGH LEVEL BLUEPRINT
THE SHAPE OF THE FUTURE SERVICE
FEBRUARY 2013
CONTENTS
1. INTRODUCTION
2. CURRENT SERVICES 3. THE CASE FOR CHANGE
4. DELIVERING CHANGE
5. CONCLUSIONS ANNEX A – EQUALLY WELL HEALTH NEEDS ASSESSMENT 2011
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1. INTRODUCTION
The need for development in the local learning disability service has been driven by a range of factors. Projected demographic changes indicate that there are increased numbers of people with learning disabilities and highly complex conditions living in the community. Orkney Health and Care is pursing an agenda of supporting more people with profound and complex needs in their own communities, rather than utilising out of Orkney placements. During 2013 – 2014 the Scottish Government will produce a second iteration of the national policy ‘The Same as You?’ which initially came out in 2000. This updated policy will no doubt continue to challenge services to continue to address social and health inequalities affecting people with learning disabilities. In addition, the service will be required to respond to the developments in self directed support as set out in the Scottish Governments Social Care (Self-directed Support) (Scotland) Bill, which was passed by parliament in November 2012. Work is also underway locally to develop an Autism Strategy, following the direction set out in the National Strategy for Scotland, which was released in November 2011. Local development needs were set out in the Health Needs Assessment Report prepared in 2011 by the Equally Well Project Nurse, attached at Annex A. Responses to all of the above challenges and opportunities must be achieved within the current financial framework and the savings and efficiency agenda that accompanies it.
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2. CURRENT SERVICES
The All Age Learning Disability Service is made up of a number of areas of service provision. Day Service Provision Day service provision is currently provided in two locations. Keelylang Day Centre is registered to provide up to 12 places per day. It operates Monday to Friday inclusive. The service is for people with complex disabilities and high levels of need. People who currently use the Keelylang Service require a high staffing level of 1-1 or 2-1 to support them with daily living and personal care tasks. St.Colm’s Day Centre is registered to provide up to 24 places per day. It operates Monday to Friday inclusive. The service is for people with lower levels of need or less complex needs. Currently a total of 34 different people access this service. St.Colm’s Day Centre provides support to individuals to achieve their personal outcomes and goals by facilitating services as much as possible within the appropriate community setting. This enables people to access activities of their choice in small groups or on an individual basis to achieve their planned outcomes. St Colm’s Day Centre also hosts a number of social enterprise projects, St Colm’s Cards (a range of hand made gift cards for all occasions), Wood ‘b’ Good (hand made wood items such as planters) and Planticrew (home grown mixed seasonal vegetables from the st Colm’s Day Centre polytunnel that are provided to the Blide Trust for use in their vegetable boxes which are sold in the local community, or used to prepare means in the St Colm’s Day Centre kitchen). These projects are undertaken by service users, with support from staff in the St Colm’s Day Centre workshop, service users from the Blide Trust and young people from the Connect Project. Both Keelylang Day Centre and St.Colm’s Day Centre services support people who are described as presenting challenging behaviour and the services have experience of supporting individuals who have developed early onset dementia. Overall, the All Age Learning Disability Service is registered to provide day services to up to 36 people per day. The number of available places and the number of people who attend on a daily basis at either location is determined by the Outcome Focussed Single Shared Assessment for each individual and the identified staffing ratio required to meet individual needs and outcomes. As a result, the number of people attending the service on any given day relates to individuals’ agreed support plans and the available staffing ratios.
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Actual Daily Attendance Mon Tue Wed Thur Fri St Colm’s 21 20 15 18 21
Keelylang 6 6 7 6 7
Total 27 26 22 24 28
Individuals are entitled to receive a Direct Payment in lieu of service provision. Where a Direct Payment has been opted for the place or hours per day that it is in lieu of have not traditionally been left vacant in the respective service to account for this. This is because the actual cost of the Direct Payment cannot be recouped from the building based service in a like for like manner. As a result; Direct Payments generally create additional cost pressures on services. Currently, 17 people with a learning disability fund their service via a Direct Payment.
Short Breaks Provision The current short breaks service is primarily focussed on offering short breaks to people via the use of an alternative residential setting so that parents, families and carers can receive a break from their caring responsibilities. The service currently offers limited outreach support to provide carers with a break in their own home. In 2012 the service was occupied for 348 nights out of a possible 365. Ten individuals currently use the service. A redesign of the service model and staffing arrangements is required in order to develop the service into one that is fit for purpose for the future and offers a flexible, person centred model of support to individuals and their families. The goal is to provide a service that is not solely dependant on bed capacity / availability, but also provides an outreach services to enables family carers to continue in their caring role for as long as possible. The service also aims to be able to expand its capacity to act as an assessment facility and support service, working with people to develop their independent living skills in a safe and supported environment, prior to a move on to independent living. The short breaks service will also transition from its current location at the St Colm’s bungalow, where it has been based for many years, to a new build in Wellington Street which will provide a modern physical environment with more capacity than is currently available, moving from two beds in one unit, to a maximum capacity of four beds, in tow adjoining units. Actual maximum occupancy levels are dependant on the suitability of sharing opportunities for individuals.
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Developing the service to make best use of the new building and achieve the overall change goals within the existing financial framework will require a review and redesign of the staffing skill mix. Supported Accommodation The service currently provides supported accommodation in Orkney for 19 service users either through directly provided and managed services, or through services commissioned from third sector agencies such as Enable Scotland and, most recently through a newly established contract with Autism Scotland. Most supported accommodation is provided to people in their own tenancies although some is set up and registered as Care Home provision. During 2012 – 2013 the service worked with Enable Scotland as part of a Public Social Partnership, to review the services that they provide locally and revise them so that they develop a personalised approach. The work involved service users, families and carers. It led to revisions to most services and the identification of significant efficiencies which were subsequently reinvested to meet additional supported accommodation growth areas. In addition to the service users in Orkney in supported accommodation, there are a small number of people supported in residential education establishments, tenancies and care homes out of Orkney. A number of these individuals transitioned to their current setting from long stay hospitals as part of the 1990’s programme of long stay hospital closure and the development of ‘care in the community’ approaches. There are no plans to return these individuals to Orkney as they are settled and well supported in their current settings, have no personal connections to Orkney as a place to live, and, where they are able to express a view, do not wish to move. Work is underway locally in partnership with Education and Housing Services to minimise the number of out of Orkney placements for young people who are going into residential educational establishments with a goal of supporting as many people as possible in their own communities. Every year there is growth in the supported accommodation service of between two and five cases. These come about where existing care arrangements break down, for example where ageing parent carers are no longer able to provide support themselves, or where young people make a transition from child to adult services and home to independent living. In addition to those receiving supported accommodation as a whole package, with accommodation included, there are a number of people living in their own homes who
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receive outreach, or floating support from the service. This is another growing area of service delivery.
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3. THE CASE FOR CHANGE The local Health Needs Assessment Report was commissioned in 2011. This states that in Orkney there are between 437 and 460 people who are diagnosed with a Learning Disability of which an estimated 380 people have a mild to moderate learning disability, and between 58 and 80 have a profound or multiple disability. The report highlighted that between 109 and 115 of these people are in regular contact with the local authority or health care services. Others may have occasional or short term contact. There are currently 96 people registered with the All Age Learning Disability Team who are either in receipt of day services, short breaks, supported accommodation, direct payments, or social work case work or support services. The social work case work service has seen an increase in referrals of 21% over two years. Research indicates that the number of adults with learning disabilities aged over 60 is likely to increase by 36% between 2001 and 20211. Although the life expectancy for people with a learning disability is increasing, with the life expectancy for people with a mild learning disability approaching that of the general population, overall life expectancy in this group continues to remain lower than that of the rest of the population. The leading cause of death is also different from that of the general population and is predominantly caused by relatively common and preventable disease or conditions e.g. heart and respiratory conditions, and epilepsy related deaths. People with a learning disability who are 65+ years old have a higher likelihood of developing dementia than the general population and in some specific conditions, the prevalence is much higher. Moreover, people who have Down’s Syndrome are prone to develop early onset dementia some 30-40 years earlier than the general population. Health inequalities remain an issue for people with a learning disability but services can play an active part in enhancing the overall health and wellbeing of people who use the services by delivering a range of social, education and employment options to improve their social, and where appropriate, economic networks2. Those people accessing the local learning disabilities day, short breaks and supported accommodation services are likely to remain as service users of some description across the course of their whole life, an estimated 40+ years. The demography indicates that re-investment is critical in order to meet the future demand for services. If services are to deliver the outcomes of national drivers and policy guidance they will need to develop the staffing skills mix and maximise the availability of staffing resources within current financial resources to improve service delivery, enhance capacity and meet the needs and outcomes for the individual and their family, and the local population.
1 Improving the Health and Wellbeing of people with Learning Disabilities (NHS 2009)
2 Health Inequalities and People with Learning Disabilities in the UK 2012
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Work has been undertaken to assess what the local service growth needs are, as far as they can be measured at any given point in time. It has been established that in the next six to 10 years an additional 6 people who are currently in the 0 to10 age group are likely to require some level of service as they transition from school and the day and respite services associated with that age group, to adult services where school will no longer provide a key aspect of their daily lives. It has also been established that there are approximately a further 30 people in the 21-30 age group who do not currently receive services or have very limited services, but may need some further level of support in the course of their life, particularly as existing family carers get older. In addition there is an unknown factor in terms of people who move to Orkney who have family members requiring services. It has been indicated that families who have dependants with a learning disability often see Orkney as a positive relocation option because of the quality of the environment and the low levels of crime and unemployment and while this reflects very well on Orkney as a whole, it does place additional demands on services.
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4. DELIVERING CHANGE Local services have been working over a number of years to deliver change in a variety of ways and work is proposed to continue over the coming years in a range of areas. The overall vision for service development is set out in the guidance ‘The Same as You?’ 2000 and is focussed on the rights of people with a learning disability to achieve the same aspirations and dreams as everyone else. Other key government initiatives such as the Personalisation agenda and Individualised Budgets place an emphasis on services being delivered where and when they are required. A key component in delivering change overall is the need to develop a fair, consistent and transparent system for the allocation of resources across the whole range of the service. Current service allocation may not be seen to be equitable, being primarily based on historical levels of provision which have not been amended in response to changing pressures. The resulting effect is a service that experiences pressures as a result of growing demand but does not realign the allocation of resources in response to those pressures. This work will require the development of transparent eligibility criteria for access to services. Day Service Provision The Health Needs Assessment Report of 2011 indicated that there will be an increase in the number of people requiring support from services. The report endorses a service philosophy which is focussed on developing networks of support in social, educational and / or employment setting as a means of improving the health and wellbeing of the people using the service. One aspect of responding to this is to modernise our approach to day services and day opportunities. Work will begin in early 2013 – 2014 on the construction of the new Lifestyle Service at the Pickaquoy Centre, following completion of the new swimming pool build, with a planned service opening projected for April 2014. The Lifestyle Service will become the centre point of the new approach to day services and day opportunities for people with learning disabilities. It will provide a service base in the heart of Kirkwall alongside the community facilities used by all members of the public and all age groups on a regular basis. It will be an ideal site from which to develop a community based service in line with person centred planning. All service users who currently attend Keelylang Day Centre will transition to the new Lifestyle service. In addition, people who currently attend St Colm’s Day Centre will also transition to the new service, although some of the St Colm’s Day Centre service users may be working towards education opportunities or work opportunities instead of day centre attendance.
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Work is being undertaken strategically with partner agencies to develop an Employment Hub. Part of the work is to develop a clear referral pathway to support people who have a learning disability to successfully access paid employment or work experience on a placement basis. The Council has agreed funding of 15K for 2013 – 2014, part funded by Orkney Health and Care, to fund a Job Coach to work alongside an Employment Worker to coach and support up to 8 people a learning disability with Job Centre Plus. Work is also underway to progress an additional bid for further funding to support up to 6 people with a learning disability in the work place. Orkney College is planning to extend the current Pathways to Independence Course from one to two years. The aim of the additional year is to further develop individual’s life and employment skills, and work with the Employment Worker and Job Coach, to secure successful placements and longer term employment. Locally, third sector services also deliver work to support people with learning disabilities to engage in their local communities and offer education and work opportunities. The service works alongside the local third sector provision and will continue to do so in coming years in order to build community capacity and enable individuals to be as self supporting as possible. Day Services intend to continue to build on delivering services within community settings with individual services being based on the person centred planning approach to inform the type of service people wish to receive and when they wish to receive this. As a result, future services will need to be able to provide a more flexible service to improve the outcomes for the individual and their family. The service provided to individuals will aim to promote and develop community networks of support in order to strengthen individual social networks that enable people to remain a part of their local communities whilst they are in receipt of their service. This also serves in delivering a person centred service and one which will enhance the health and wellbeing of the individuals who use it. Developments in day services are driven by the need to respond to expected demographic changes, national and local policy development, and the agenda to develop local services which are sufficiently expert to enable people with highly complex needs to return home to, or remain in, Orkney. This needs to be achieved within a financial framework. Achieving service repatriation goals, ie avoidance where possible of out of Orkney placements in favour of supporting people to remain in their own communities, requires the development of resources and expertise locally and routes to commissioning appropriate specialist services when required. Overall, to achieve the developments set out above, investment is required to improve and modernise services. The current staffing skills mix will need to be reviewed and an increase in the level of available staffing from within existing resources achieved if services are to deliver on this ambitious agenda for change. It is not anticipated that there will reductions in staffing overall, but there may be changes to posts. Work to
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develop the most appropriate staffing model will harmonise with service model development work. Consultation will be undertaken with staff, service users, families and carers, and Trade Unions appropriately building on the consultation work that has already been undertaken to date. Short Breaks Provision It is anticipated that in May 2013 Orkney Housing Association Ltd will hand over the new short break facility at Wellington Street in Kirkwall, to Orkney Health and Care. The new facility offers four bed spaces in two flats, or units, in place of the current two bed spaces in one bungalow or unit. The short breaks service’s aim is to be able to provide the anticipated level of service in the new facility i.e. 4 four beds, as well as offering a choice to people regarding how and where they would like their short breaks service to be delivered e.g. residential short breaks and / or outreach services supporting individuals to meet their own outcomes and needs. To meet this challenging development agenda, the service will need to modernise and develop a staffing skill mix to enhance capacity in order to meet future demands for community based services. In addition services need to have an appropriate staff skills mix to meet the current and developing needs of individuals who have more complex health needs as a result of their learning disability. As with the day services developments, it is not anticipated that there will be reductions in staffing overall, but changes to posts, roles and responsibilities will be required in order to meet the challenges ahead. Work to develop the most appropriate staffing model will run alongside and will support work to develop the service model. The design work on the physical aspects of the building are already nearing completion. Consultation will be undertaken with staff, service users, families and carers, and Trade Unions. This consultation work on the design of the service was initiated in 2011 – 2012 and has been further developing in 2012 – 2013, and will continue. Supported Accommodation A programme of repatriation of people in out of Orkney placements is being pursued and following a procurement exercise in 2012 – 2013, the coming year sees the establishment of an Autism Scotland supported accommodation service for three young people with autism in Orkney, two of whom have been out of Orkney for a considerable period of time. Development plans include extending this service to repatriate a further young person in 2013 – 2014. In order to support this agenda it is essential that local services and local staff are sufficiently trained, supported and equipped to enable people with highly complex needs
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to return home to Orkney. Local skills require to be supported by access to appropriate health services in Orkney and advice and support from specialist services in partner health board areas. Growth is anticipated to continue in the area of supported accommodation at an ongoing estimated rate of a minimum of 2 cases per year. Growth is also anticipated in relation to floating support or outreach services as increasing numbers of individuals with support needs are living independently in the community.
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5. CONCLUSIONS There are a range of drivers for service development and the Blueprint has set out the key development areas that the service aims to undertake in the short to medium term. The service developments that are aimed for are set out in section four. Key steps to achieving these developments are as follows: The service will develop a model that will deliver innovative ways to provide services in the community based on the principles set out in ‘Same as You?’ 2000 and will ensure that the service delivered is community based and informed by person centred planning with agreed goals and outcomes. The service will continue to work with key partners, including third sector partners, to build and develop a pathway of support to provide younger people with a range of opportunities to develop and maintain skills e.g. employment, befriending services and volunteering opportunities. The service will aim to equip staff with the required skills and knowledge to plan and deliver services to meet the needs of those people with a learning disability who have complex health needs or challenging behaviour or who are experiencing early onset dementia. This includes access to appropriate health care services. The service will develop a service model for the new short breaks service which will include working on a staffing model to support the service delivery. The service will develop a service model for the new day service, focussed around the Lifestyle Service. This will include work on the staffing models to support the service delivery. Overall, it is intended to review the current staffing models to bring consistency and the appropriate levels and skills mix across the service and in line with the wider services e.g. Older People services, to reduce the overall cost and at the same time increase capacity and resources to achieve the anticipated outline of service delivery. To make the vision for services a reality it is proposed that the number of front line staff (Social Care Assistants / Support Workers) needs to be increased to provide sufficient flexibility and staffing capacity to deliver the required level of service. The number of more senior staff (Social Care Workers / Senior Social Care Workers / Registered Managers) will be in line with the requirements of the Care Inspectorate and sufficient to undertake the completion, monitoring and delivery of Person Centred Planning and service planning. All services are registered with the Care Inspectorate and have a requirement to meet minimum quality standards as well as deliver services which meet individual outcomes, wishes and aspirations.
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There are two staff redesign options specific to the day service; Option 1 - That the service is able to redesign and develop a staffing skill mix to enhance service capacity and deliver a person centred service, but the model of service delivery is based on the current opening pattern of 09.00 -17.00, Monday - Friday. This model would allow for some growth in capacity but will fail to achieve individual outcomes and meet the expectations of a personalised service beyond existing opening hours. Consultation with service users and families to date indicates that they do not currently identify a significant need for support out with the current service hours. However this view may change as expectations of personalised services change over time. Option 2 - That the service is able to redesign and develop a staffing skill mix to enhance service capacity and deliver a person centred service, with a model of service delivery that is more flexible than the current opening pattern of 09.00 -17.00, Monday - Friday. Adopting this model would enable the service to deliver a more flexible model to achieve individual outcomes and goals informed by person centred planning. Both options require further consideration and any proposals will require consultation with staff and Trade Unions prior to progressing. It will be important that future services be allocated consistently and fairly in line with an assessment, identifying the outcomes to be achieved. In order to enable this approach the service will aim to develop a transparent and consistent allocation of resources approach. This will require clear eligibility criteria for access to services, in line with the national eligibility criteria framework. Although there has been a drive to deliver efficiency savings and a considerable amount has been achieved to date, a considerable element has also had to be reinvested in order to maximise the use of resources and deliver a high quality, flexible service in line with the outcomes from the assessment of identified needs against allocated resources. This has included the need to provide additional unforeseen urgent supported accommodation or high cost packages. The service will continue to work to identify further efficiencies where possible and will monitor spending and service pressures. It is proposed that the service tracks the impact of the proposed changes using the following measures.
% increase in numbers of individuals using the service(s)
% of people who say they are satisfied with their service
% increase in the numbers of people with learning disabilities in employment (paid or unpaid, supported or unsupported).
% increase in numbers of people who use the service who are participating in community activities
% increase in the total number of people receiving a short break
Annex A
Health Needs Assessment Report
Adults with Learning Disabilities Living in Orkney
April 2011(Final version 4)
Prepared by Dr Sandra Rodwell
Equally Well Project Nurse (Learning Disabilities)
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Contents Glossary of terms ............................................................................................................ 4
Summary report .............................................................................................................. 6
Main report .................................................................................................................... 13
Section one – Setting the scene .................................................................................... 13
1.1 Introduction .......................................................................................................... 13
1.2 Structure of the report ...................................................................................... 13
1.3 The legislative and policy context .................................................................... 13
1.4 The prevalence of learning disability ................................................................ 15
1.5 The health inequalities experienced by people with learning disabilities .......... 17
1.5.1 Different pattern of ill health ....................................................................... 18
1.5.2 Barriers to health care ............................................................................... 19
1.6 The local picture .............................................................................................. 19
Section two - The health needs assessment process ................................................... 21
2.1 Underlying principles ........................................................................................ 21
2. 2 Aim, objectives, methods and process of analysis .......................................... 22
Section three Key findings ........................................................................................ 25
3.1 Summary findings from each strand of the health needs assessment process ... 25
3.1.1 Population profile .......................................................................................... 25
3.1.2 What people with a learning disability and their family carers had to say .. 27
3.1.3 What service providers had to say ............................................................. 27
3.1.4 What the audit had to say .......................................................................... 28
3.2 Recurring themes ............................................................................................. 28
3.2.1 Being aware ............................................................................................... 29
3.2.2 Communication .......................................................................................... 29
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3.2.3 Communication, capacity and consent ...................................................... 31
3.2.4 Education and resources ........................................................................... 32
3.2.5 Inconsistent quality of care ........................................................................ 32
3.2.6 Denial ........................................................................................................ 33
3.3 Presentation of the unmet health needs – The five-tiered model of care ......... 33
3.3.1 Tier 0 – Community, public health and strategic approaches to care ........ 34
3.3.2 Tier 1 Primary care and directly accessed health services ........................ 37
3.3.3 Tier 2 Health services accessed via primary care .................................... 47
3.3.4 Tier 3 and 4 – Specialist health services ................................................... 50
3.4 Overall conclusion ............................................................................................ 53
Section four – Recommendations ................................................................................. 55
Appendix 1 – Different strands of the health needs assessment process.................. 59
Appendix 2 - Five tiered model of health care ........................................................... 68
Appendix 3 – Key knowledge skills and activities ...................................................... 69
This report presents the findings from a health need assessment carried out between March and October 2010 Acknowledgements The author wishes to thank all of those that took part in the health needs assessment process, in particular those with a learning disability and their family carers.
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Glossary of terms As a process, health needs assessment is about making value judgments. In order to be clear about the focus, purpose, and scope of this health needs assessment the following definitions of health, health inequalities, learning disability, needs assessment, reasonable adjustments to practice and valid consent were adopted. Health: The definition of health applied to this health needs assessment is the one set
out by the World Health Organisation (WHO) in 1948 which focused on health as state
of complete physical, mental and social well-being and not just the absence of disease
and illness. This definition recognises the impact of the wider social determinants of
health and suggests that a health needs assessment should not focus solely on
people’s need for specialist services, although this is a concern. This definition
supports the use of a social rather than a medical model of health.
Health Inequalities: Inequity in access to health care services and health status
between different and discrete populations, for example people living in defined
geographical areas, different ethnic communities, or people with learning disabilities.
These populations may experience multiple factors that result in health inequalities.3
Examples of health inequalities include differing
access to health information
access to mainstream health care
chances of employment
Learning Disabilities: The definition of learning disabilities applied to this health needs
assessment is taken from The same as you? A review of services for people with
learning disabilities (Scottish Executive 2000) and is as follows:
People with learning disabilities have a significant, lifelong condition that started before
adulthood, that affected their development and means they need help to:
understand information;
learn new skills; and
3 Blaney A, Hanlon P, Judge K and Muirie J (Eds) (2002) Health Inequalities in the New Scotland. Public Health
Institute for Scotland, Glasgow
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cope independently.
This definition has been adopted by a range of policy documents developed by the Scottish Government specific to those with learning disabilities, and is widely recognised and understood. Needs Assessment: The needs assessment process is about systematically exploring how things are and how they should be. The focus of the data generation process was identifying the gaps in services, not the solutions. It is important to look more closely at the problem before moving to the solution in order to ensure the solution is appropriate, feasible, and acceptable. The health needs assessment was broad in focus and adopted a holistic definition of need. This approach was based on the premise that adopting an inclusive approach that involves multiple stakeholders can have wider benefits such as raising awareness, building commitment to action, increasing communication, and support networking between organisations leading to a better coordination of services. Reasonable adjustments to Practice: This phrase is used to describe actions taken by health care professionals and others which makes access to their service for people with a learning disability easier. Examples are longer appointment times, information in an easy to read format, familiarising individuals to the steps involved in a specific procedure before it happens, quiet waiting areas and providing care (where feasible) in an environment that suits the individual and the removal of any physical barriers. Valid consent: The phrase valid consent is used as it suggests that gaining consent is not only about providing information in a manner which allows an individual to make an informed choice, but that consent is sought from someone with the appropriate authority to make a decision. In situations where the individual concerned has been assessed as not being able to give consent then this may be a family carer who has guardianship or a health professional.
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Summary report
This report presents a summary of the findings of a health needs assessment carried
out between March and October 2010. The health needs assessment process is a
useful tool in identifying current unmet health needs of a specific population within the
context of existing services and the legislative4,5 and political environment6.
Aim - The overall aim of the health needs assessment was to identify and explore areas
of unmet need in order to inform and support the development of services appropriate to
addressing the needs of adults with learning disabilities living in Orkney.
Objectives - In order to meet the overall aim the following objectives were identified:
Develop a profile of adults with a learning disability.
Develop a systematic, inclusive, and robust approach to developing the evidence
base of unmet need.
Based on the findings of the health needs assessment, make a number of
recommendations to support the process of service improvement.
Methods - A predominately qualitative approach was taken to the process of data generation and analysis. In order to meet the stated aims and objectives a framework was developed which comprised five strands as follows:
Population profile – Drawing on national and local statistics provides an overview
of the size of the adult population of people in Orkney with learning disabilities and
the services they access at present.
Audit – The method applied to this exercise comprised a self-completion
questionnaire which served as a self assessment tool. The questionnaire was
adapted from one provided by NHS Quality Improvement Scotland in their Best
Practice Statement (February 2006).7
4 Disability Discrimination Act (1995) The Stationery Office, London
5 Equality Act 2010 HM Government, Office of Disabilities, United Kingdom
6Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh 7 NHS Quality Improvement Scotland (2006) Best Practice Statement: Promoting access to healthcare for people
with a learning disability – A guide for frontline staff, NHS QIS, Edinburgh
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Consultation with service providers – The nominal group technique
Workers from across NHS Orkney, Orkney Islands Council All Age Disability Service and the Voluntary Sector were invited to take part in a number of nominal groups. The nominal group technique facilitates a structured approach to group discussions aimed at generating ideas, identifying problems and establishing priorities. The process addresses the issue of the dominant voice.
Consultation with people with learning disabilities - A mixed-methods approach
was taken as follows:
Group work – an interactive half day session exploring the experiences of three people with mild learning disabilities
Patient stories - exploring the experiences of four individuals with different levels of learning disability. The stories were told by the individuals themselves, through an independent advocate, social care provider or a family member.
Consultation with family carers – A mixed methods approach was taken as
follows:
A self completion questionnaire - exploring the views and experiences of family carers. The questionnaire was adapted from the one devised by NHS Quality Improvement Scotland and the Scottish Consortium for Learning Disabilities (2005).8
Telephone interviews – involving three participants who had completed and returned the questionnaire but had specific issues they wished to discuss further.
More information about the methods applied to the different strands of the health needs assessment process and a profile of participants is set out in appendix 1. Process of analysis and reporting A qualitative approach to the process of analysis was adopted. The data generated through each strand of the health needs assessment process was analysed and reported on separately; individual reports were produced9. The collective data was then looked at for common themes and differences. The data was then considered with a framework provided by the five-tiered model of care. For a summary description of the five-tiered model of care see appendix 2 Findings 1
8 NHS Quality Improvement Scotland and Scottish Consortium for Learning Disabilities (2005) Improving the
Health of People with a Learning Disability: A guide for NHS Services, their Partners and Advocacy groups. How
people with Learning Disabilities and their Families can be involved in improving the quality of health services.
NHS QIS, Edinburgh 9 Individual reports available from Sandra Rodwell Equally Well Project
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Population profile There are variations in the prevalence of learning disability recorded in local health
board areas UK wide. These variations may be due to different definitions being
applied, who it is being counted, and methodological differences between areas as to
how and what data is collected10. Prevalence rates can also change over time due to
better recording procedures, increased awareness, a change in attitude towards a
particular section of the population or a specific condition and migration. Caution needs
to be exercised when estimating local data based on national prevalence rates. At the
same time being able to estimate numbers is an important administrative activity in
order to plan the development and delivery of appropriate services.
The number of people with a learning disability has been estimated as follows11,12:
120,000 people with a learning disability in Scotland.
20 people in every 1,000 have a mild or moderate learning disability; and
3 to 4 people for every 1,000 have profound or multiple disabilities.
Only 30,000 (25%) are in regular contact with the local authority or health
care services.
By applying the Scotland wide prevalence rates to the Orkney population of 19,960
(inclusive of adults and children) the following estimates can be made as to the number
of people with a learning disability living in Orkney.
Between 437 and 460 people with a learning disability live in Orkney
It can be estimated that 380 people in Orkney have a mild to moderate
learning disability
Between 58 and 80 have profound or multiple disabilities
10
Gates B, Barr O (eds) (2009) Oxford Handbook of Learning and Intellectual Disability Nursing. Oxford
University Press, Oxford 11
Scottish Executive (2000) The Same as you? A review of services for people with learning disabilities, The
Stationery Office, Edinburgh 12
NHS Health Scotland (2004) The Health Needs Assessment Report: People with learning disabilities in Scotland.
NHS Health Scotland, Glasgow
9
Between 109 and 115 are in regular contact with local authority or health care
services. Others may have occasional or short term contact.
Local administrative statistics
There are two main administrative databases for adults with a learning disability living in
Orkney. The register developed through the Quality and Outcomes Framework (QOF)
for GP practices tell us how many adults over the age of 18 are recorded as having a
learning disability and are registered with a GP.13 The All Age Disability Service
database records the number of people with a learning disability who have received or
are receiving support from social services.
The number of adults recorded are:
Quality and Outcomes Framework register - 71 adults registered
All Age Disability Service database – 79 adults registered
The numbers have to be treated with caution as they only reflect those who are
recorded as having a learning disability and who use or have used a service. There
may be people with a mild learning disability who have not been assessed as having a
learning disability or who do not use services.
For a more information about the local population of people with a learning disability see
Section 3.1.1 of the main report.
Findings 2
The views and experiences of people with a learning disability, family carers and service providers Exploring the views and experiences of people with a learning disability and their family carers highlighted the inconsistent response of health care services to their health needs. A number of areas of risk were identified which could impact on the quality of care and result in unintentional harm for example the lack of information in an appropriate format and the knowledge and skills of health care professionals. Limited access to specialist services was a particular area of concern. The views and experiences of service providers supported these assertions. It is important to note
13
isd Scotland (2010) Statistical Publication Notice www.isdscotland.org accessed 2010.
10
however, that areas of good practice were also identified particularly within the dental service. Recurring themes A number of recurring themes were identified which were shared across the different strands of the health needs assessment. Within each of the following themes were a number of factors which were identified as compromising the ability of people with a learning disability to access fair and equitable health care.
Being aware - a lack of awareness about the needs of people with a learning
disability and whether an individual had a learning disability was seen to have the
potential to lead to wasted appointment times, unnecessary medical
appointments which could lead to distress, ineffective consultations, or failure to
attend appointments.
Communication - knowing how an individual communicates and their level of
comprehension was identified as key to engaging people with a learning disability
in the health care they may require.
Communication, capacity and valid consent - the health needs assessment
process highlighted the importance of understanding the interconnected nature of
communication, capacity and valid consent when responding to people with a
learning disability. Health professionals have a key role in ensuring people with a
learning disability are able to both give and receive information to the best of their
ability so that they are able to make decisions. It would seem that this does not
always happen.
Education and resources - The need for more awareness raising and education
for health care professionals and those from other sectors, as to the health needs
of people with a learning disability and the reasonable adjustments to practice
which can be made was identified.
Variations in the quality of care – As well as the level of knowledge and skill of
individual practitioners, geography was also identified as an underlying factor
impacting on the quality of care. This issue was raised by service providers and
family carers living on the Isles rather than mainland Orkney. Access to
specialist services provided through NHS Grampian was also an area of concern.
11
It was also noted that once children with a learning disability reach adulthood,
service provision is much reduced.
Denial - The situation where people with a learning disability or their family
carers refused to acknowledge they had a learning disability was highlighted.
The potentially negative impact on their care was raised. During the group work
where the participants had a mild learning disability, their desire to be treated the
same as others was clear.
The five tiered model of care It is evident that the health needs of people with a learning disability are to an extent addressed. However, it is apparent that some health care professionals are unaware of or feel unable to meet the Board’s legal obligation under equality and diversity legislation. As a consequence people with a learning disability may experience unintentional direct discrimination as demonstrated in the findings within the framework of the five-tiered model of care. This in part reflects the level of specialist support about learning disability that is available to staff, limited access to appropriate resources and the lack of clear protocols and policies built into existing integrated pathways of care. Generic clinical pathways and patient information may not meet the needs of people with a learning disability. The lack of locally based specialist services providing assessment and treatment in areas such as clinical psychology, psychiatry and epilepsy was considered to constitute an infringement of their human rights. These services are available to the population who do not have a learning disability. Chance appears to be a factor which can influence some of the health care experience of people with a learning disability. Conclusion The findings from this health needs assessment demonstrate the multifaceted aspect of access to equitable health care and health outcomes for people with a learning disability. While some areas of good practice were identified, a variety of factors were also highlighted which can negatively impact on their experiences, restricting the opportunity and choice that is available to them and compromising their ability to be actively involved in their own health care. The concepts of opportunity and choice were discussed in general terms as well as in relation to specific services. The findings presented in this report clearly demonstrate that access to equitable health care is not just about getting into a building or being in receipt of treatment. It would seem that in relation to people with learning disabilities NHS Orkney is not meeting its obligations under equality and diversity legislation. The quality of the health care experience of people with a learning disability should not be left to chance.
12
Recommendations Six recommendations have been made at a strategic and operational level aimed at addressing the areas of unmet need identified through the health needs assessment process. If applied the following recommendations would support the development of an operational environment which would enabled service providers to respond appropriately to people with learning disabilities. The recommendations fall into the following broad categories:
Strategic and operational leadership
Access to specialist services
Monitoring and evaluating change
Awareness raising and training
Specific interventions
Infrastructure
Key to developing and supporting the implementation of the recommendations is the need for a dedicated healthcare professional with specialist knowledge in learning disabilities. By providing clear leadership at both a strategic and operational level the learning disability specialist will work to establish an organisational environment which promotes and supports the development and delivery of fair and equitable health care and health outcomes for people with a learning disability. For a more detailed account of the recommendations see section 4 of the main report. An overview of the key areas of knowledge, skills and activities required of the health care specialist is provided in appendix 3.
13
Main report
Section one – Setting the scene
1.1 Introduction
This report presents the findings of a health needs assessment aimed at identifying the perceived and expressed unmet health needs of adults with learning disabilities living in Orkney. The findings and recommendations from this health needs assessment will shape the model of care appropriate to the needs of those with a learning disability living in Orkney. Given the small numbers with a learning disability, the geography of the Orkney Isles and the close working relationship between health and social care services, the preferred model of service delivery requires a model of care which is less dependent on a specialist learning disabilities team found in larger Health Board areas. While recognising that individuals with learning disabilities have specific needs and those working in the field of learning disabilities employ a particular skills set, those skills are not necessarily specific to one health care discipline or service provider. This ethos which aims to develop the skills of generic practitioners sits well with the wider legislative and political agenda outlined in section 1.3 of this report. 1.2 Structure of the report
This report is divided into four sections. This section sets the scene by providing an overview of the policy context, an outline population profile and health status of people with a learning disability. Section two provides an overview of the aims, objectives, and methods applied to the data generation process and analysis. The findings are presented in section three with a summary account of each of the health needs assessment activities and reference to the key cross-cutting themes. The findings from the combined dataset are then discussed within a framework provided by the five-tired model of care. This model was adopted by NHS Health Scotland (2004)14 when mapping services for people with learning disabilities across Scotland. For a more detailed account of each of the stands of the health needs assessment process see appendix 1. A description of the five-tiered model of care is provided in appendix 2. This report concludes with six key recommendations and associated actions for future service development. 1.3 The legislative and policy context
The work of the Equally Well Project in Orkney is framed by the wider legislative and policy context as well as the findings from a review of NHS Orkney’s response to people with learning disabilities living in Orkney.15
14
NHS Scotland (2004) The Health Needs Assessment Report: People with learning disabilities in Scotland. NHS
Scotland 15
NHS Quality Improvement Scotland (2009) NHS Orkney Local Report: Healthcare services for people with
learning disabilities. NHS Quality Improvement Scotland, Edinburgh
14
The following legislation, policy documents and research reports shape the response of health services to people with learning disabilities living in Scotland:
• The Disability Discrimination Act 1995
• The Human Rights Act 1998
• The same as you? A review of services for people with learning disabilities
Scottish Executive 2000
• The Adults with Incapacity (Scotland) Act 2000
• Promoting health, supporting inclusion: The national overview of the contribution
of all nurses and midwives to the care and support of people with learning
disabilities Scottish Executive 2002
• Mental Health (Care and Treatment) (Scotland) Act 2003
• People with learning disabilities in Scotland HNA Report NHS Scotland 2004
• Death by indifference (Mencap 2007)
• Equally well : report of the ministerial task force on health inequalities The
Scottish Government (2008)
• The Equality Act 2010
The legislative and policy environment is aimed at protecting people with disabilities, including those with a learning disability from direct discrimination by promoting and supporting their rights to enjoy equal opportunities in all aspects of life for example employment, education and health care. Supported by the legislative framework and focused on people with a learning disability, The Same as You (Scottish Executive 2000) has identified seven key principles as central to their care.16 People with learning disabilities should be:
Valued
Treated as individuals
Asked about what they need and involved in choices
Given the health and support to do what they want to do
Able to get local services just like everyone else
Able to access specialist services when they need them
16
Scottish Executive (2000) The Same as you? A review of services for people with learning disabilities. The
Stationery Office, Edinburgh
15
Able to have services which take account of age, ability and needs.
(Scottish Executive 2000:11)
These principles underpin the findings and recommendations of subsequent government reports. The aim is to ensure that account is taken of the human, civil and legal rights of people with a learning disability and that these are embedded locally in the responses of each of the NHS Health Boards at a strategic and operational level. The national reports also call for a proactive rather than a reactive approach to the health needs of people with learning disabilities, with organisations working together in order to support a holistic, person centred approach to health care. The focus is on sustainable change within generic health care services. All nurses and midwives access the different levels and locations of health care provision have a key role to play.17 Through The Equally Well Implementation Plan (Scottish Government 2008) NHS Scotland pledged to support NHS Health Boards in tackling the health inequalities experienced by different sections of society, including people with learning disabilities. Health Boards have had access to short term funding focused on enabling exploratory and development work aimed at identifying and addressing local factors which impact on the opportunities for people with learning disabilities to access fair and equitable health care and positive health care outcomes. A network of the different Equally Well projects has been developed providing a forum through which to share good practice, innovative ideas, and practical resources. 1.4 The prevalence of learning disability
It is common practice to estimate the size of the population with a learning disability with
reference to the prevalence rate, which is the proportion of the population estimated to
have a learning disability. This approach reflects the nature of learning disability and
the impact this has on identification. Where there are no obvious indicators diagnosis is
delayed until developmental delay and other signs and symptoms are evident18.
Parents may deny there is an issue with a member of their family. The most difficult
group to count are those with a mild learning disability. People with a learning disability
may also reject the diagnosis. As a consequence of these factors local databases may
be incomplete. A pragmatic approach is to look at the wider trends across Scotland
applying data from national statistics to the local situation.
17
Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh 18
Gates B, Barr O (Eds) (2009) Oxford Handbook of Learning and Intellectual Disability Nursing. Oxford Press,
Oxford
16
Caution needs to be exercised when estimating local data based on national prevalence
rates. There are variations in the prevalence of learning disability recorded in local
health board areas UK wide. These variations may be due to different definitions being
applied, who is being counted, and methodological differences between areas as to how
and what data is collected19. Prevalence rates can also change over time due to better
recording procedures, increased awareness, and a change in attitude towards a
particular section of the population or a specific condition. At the same time being able
to estimate numbers is an important administrative activity in order to plan the
development and delivery of appropriate services.
The Same as you? (2000) and the Health Needs Assessment (2004) refer to the
following prevalence rates when estimating the number of people with a learning
disability living in Scotland.20,21 The following estimate have been made:
120,000 people with a learning disability in Scotland.
20 people in every 1,000 have a mild or moderate learning disability; and
3 to 4 people for every 1,000 have a profound or multiple disabilities.
Only 30,000 (25%) are in regular contact with the local authority or health
care services.
By applying the Scotland wide prevalence rates to the Orkney population of 19,960
(including adults and children) the following estimates can be made as to the number of
people with a learning disability living in Orkney.
Between 437 and 460 people with a learning disability live in Orkney
19
Gates B, Barr O (Eds) (2009) Oxford Handbook of Learning and Intellectual Disability Nursing. Oxford Press,
Oxford 20
Scottish Executive (2000) The Same as you? A review of services for people with learning disabilities. The
Stationery Office, Edinburgh 21
NHS Health Scotland (2004) The Health Needs Assessment Report: People with learning disabilities in Scotland.
NHS Health Scotland, Glasgow
17
It can be estimated that 380 people in Orkney have a mild to moderate
learning disability
Between 58 and 80 have profound or multiple disabilities
Between 109 and 115 are in regular contact with local authority or health care
services. Other may have occasional or short term contact.
Local administrative statistics
There are two main administrative databases for adults with a learning disability living in
Orkney. The register developed through the Quality and Outcomes Framework (QOF)
for GP practices tell us how many adults over the age of 18 are recorded as having a
learning disability and are registered with a GP.22 The All Age Disability Service
database records the number of people with a learning disability who have received or
are receiving support from social services. The numbers are:
Quality and Outcomes Framework register - 72 adults registered
All Age Disability - Learning Disabilities database - 79 registered
These numbers have to be treated with caution as they only reflect those who are
recorded as having a learning disability and use a service. There may be people with a
mild learning disability who have not been assessed as having a learning disability or
who do not use services.
1.5 The health inequalities experienced by people with learning disabilities
People with learning disabilities have higher health needs and more complex health needs. A significant proportion of health needs go unrecognised and untreated. For adults the prevalence of learning disabilities is higher among those in poor socio-economic circumstances. Drawing on the available national and international research the following trends have been identified at a population level as to the life expectancy and mortality of people with a learning disability.23
22
isd Scotland (2010) Statistical Publication Notice www.isdscotland.org accessed 2010. 23
Emerson E, Baines S (2010) Health Inequalities and People with Learning Disabilities in the UK. Department of
Health, London
18
Life expectancy of people with learning disabilities is increasing but it remains much
lower than the rest of the population. This is a key measure of the health status of a
population.
The leading cause of death is different from the general population.
The number of people with learning disabilities is increasing.
There is an increase in the numbers with severe learning disabilities across all age
cohorts.
People with a learning disability have a high prevalence of health need.
People with a learning disability have a high level of unmet health need.
1.5.1 Different pattern of ill health
Examples of different patterns of health have also been identified as follows: • Epilepsy - 22% of people with Learning Disability, compared to 1% of the general
population.
• Dementia - 21.6% of people with a Learning Disability, compared to 5.7% of the
general population.
• Schizophrenia - 3% of people with a Learning Disability, compared to 1% of the
general population.
• Gastro-esophageal reflux disease - 48%
People with a Learning Disability are more likely to have the following problems some of which may be due to lifestyle issues and poor diet:24
• Earlier onset of osteoporosis and more likely to have fractures.
• Tooth decay. People with Down’s syndrome have a higher rate of oral
complications.
• Be either overweight or underweight.
• Diabetes.
• Thyroid problems.
• Higher rates of physical and sensory impairment.
24
Emerson E, Baines S (2010) Health Inequalities and People with Learning Disabilities in the UK. Department of
Health, London
19
1.5.2 Barriers to health care
A number of barriers have been identified as impacting negatively on the ability of people with a learning disability to access fair and equitable health care.25,26 Examples of the barriers are:
• Assumptions and attitudes of individual service providers such as low
expectations.
• Lack of awareness of the health needs of people with a learning disability.
• Communication both between health care professionals and those with a
learning disability as well as between service providers.
• Administrative barriers such as appointment systems and lengths of
appointments.
• Lack of preparation.
• Previous negative experiences.
• Professional uncertainty about consent.
1.6 The local picture
The extent to which health services were meeting the needs of children and adults with a learning disability throughout Scotland was reviewed by NHS Quality Improvement Scotland (NHS QIS) during 2008-2009. A number of quality indicators formed the basis of a self assessment, self completion questionnaire which was distributed to each health board area. This exercise was followed by a visit from an NHS QIS review team. The findings from the local review presented a mixed picture identifying areas that were good and areas that were not so good. In order to address the different areas of concern the Equally Well Project was developed. The Equally Well Project The Equally Well Change Programme is facilitated through the Equally Well Project Nurse (Learning Disabilities). The overall aim of the two year project in Orkney is to address the concerns raised by QIS assessment. Also included in the remit is the identification of the unmet health needs of adults with a learning disability living in Orkney, the promotion of sustainable change through building capacity within generic health service provision and an exploration of the need for a dedicated health care specialist (learning disability). The aims of the project are being achieved through working in partnership with Primary Care (NHSO), the All Age Disabilities Service (OIC), the voluntary sector as well as individuals with learning disabilities and their family carers. In order to meet the aims the following activities have been undertaken:
25
The Scottish Executive (2000) The Same as you?: A review of services for people with learning disabilities.
Scottish Executive, Edinburgh 26
Mencap (2007) Death by Indifference: Following up the ‘Treat me Right’ report. Mencap, London
20
Health Needs Assessment activity – providing the opportunity to explore in more
depth the unmet health needs of adults with learning disabilities locally at a
population level. This ensures that policies and procedures are grounded in local
knowledge and evidence base.
The involvement of those with learning disabilities and their carers in identifying
the unmet health needs and appropriate actions.
The development of care pathways in and through health care services.
Raising awareness of the reasonable adjustments to practice that make it easier
for people with a learning disability to access services provided through primary
care and within the local hospital.
Promoting and supporting access to both general health promotion activity and
information as well as specific initiatives such as screening programmes.
Monitoring, audit and evaluation of the work of the project and the outcomes.
Identifying a clear role for any future Learning Disability Specialist in order to
enable NHS Orkney to meet its obligations with in the equality and diversity
agenda.
There is some overlap between the various activities, for example being involved in the health needs assessment process will raise awareness among individual service providers of the unmet health needs identified by colleagues that they had not previously been aware of. The various activities will also raise the profile of this particular section of society and work towards addressing any outdated assumptions and stereo-typed beliefs.
21
Section two - The health needs assessment process This section begins by setting out the principles underpinning the health needs assessment process. The aim of the exercise and the methods applied to data generation and analysis are then set out. 2.1 Underlying principles
Addressing the health needs of people with learning disabilities involves a range of agencies and sectors. A number of key principles underpinned the health needs assessment work.
The work of the health needs assessment was based on the premise that the
health inequalities experienced by people with a learning disability are a
consequence of the limitations of the service response and not the capabilities of
individuals with a learning disability.
The approach taken to the health needs assessment process was aimed at being
inclusive rather than exclusive. In order to prevent one voice from dominating
multiple viewpoints were sought. Adopting a systematic and inclusive approach
promotes a wider understanding of what is going on and as a consequence has
the potential to facilitate resolution of seemingly conflicting or contradictory
standpoints. The conclusion and recommendations are strengthened through
triangulation of the data generation process.27
A participatory methodology to identifying need was applied as a way of
encouraging local ownership and supporting the process of change.
27
Mason J (2002) Qualitative Researching. Sage Publications, London
22
2. 2 Aim, objectives, methods and process of analysis
2.2.1 Aim The overall aim of the health needs assessment was to identify and explore the areas of unmet need in order to inform and support the development of services appropriate to addressing the health needs of adults with learning disabilities living in Orkney. 2.2.2 Objectives In order to meet the overall aim the following objectives were identified:
Develop a profile of adults with a learning disability.
Develop a systematic, inclusive, and robust approach to developing the evidence
base of unmet need.
Based on the findings of the health needs assessment, make a number of
recommendations to support the process of service redesign.
2.2.3 Methods A predominately qualitative approach was taken to the process of data generation and analysis. In order to meet the stated aims and objectives a framework was developed which comprised four steps as follows: Population profile – Drawing on national and local statistics provide a description of
the size of the adult population of people in Orkney with learning disabilities and the
services they access at present. Being able to count (as far as is possible) the actual
numbers of individuals with a learning disability is an important administrative activity,
particularly for local authority social services who wish to predict increasing expenditure
due to the changing demographics. However, the degree or level of learning disability
is not necessarily an indicator of the need for services. A person may have significant
difficulties but cope well in the right environment, while someone with minor difficulties
may be severely disadvantaged if they are isolated and unsupported28. Numbers only
tell part of the story. Routine databases tend to be incomplete and the information is
only as good as the system applied to recording it. There is also the possibility of
double counting due to the overlap of databases.
Audit – The method applied to this exercise comprised a self-completion questionnaire which served as a self assessment tool. The questionnaire was adapted from one
28
Gates B and Barr O (eds) (2009) Oxford Handbook of Learning and Intellectual Disability Nursing. Oxford
University Press, Oxford
23
provided by NHS Quality Improvement Scotland in their Best Practice Statement (February 2006). A recommendation of this statement was that the resource should be adapted and applied across all Health Board areas in Scotland.29 The questionnaire was divided into six sections and covered a list of activities and
arrangements considered as key to facilitating access to services. A few of the
questions were modified or removed in order to reflect the main function of each sector,
while the overall theme for each section remained the same.
Nominal groups - The nominal group technique was applied. The nominal group technique facilitates a structured approach to group discussions aimed at generating ideas, identifying problems and establishing priorities. The process addresses the issue of the dominant voice. Participation was sought from workers across NHS Orkney, Orkney Islands Council All Age Disability Service and the Voluntary Sector. A pragmatic approach was taken to the sampling frame as the study population was specific to the aims of this particular exercise and there was no requirement for statistical generalisation to a wider population. A number of informal presentations, written communication, and discussions took place with key ‘gatekeepers’ before invitations to a nominal group discussion were sent out. Consultation with people with learning disabilities - A mixed-methods approach was taken as follows:
Group work – an interactive half day session exploring the experiences of three
people with mild learning disabilities.
Patient stories exploring the experiences of four individuals with different levels of
learning disability. The stories were told by the individuals themselves, through
an independent advocate, social care provider or a family member.
Consultation with family carers – A mixed methods approach was taken as follows:
A self completion questionnaire exploring the views and experiences of family
carers. The questionnaire was adapted from the one devised by NHS Quality
Improvement Scotland and the Scottish Consortium for Learning Disabilities
(2005).
29
NHS Quality Improvement Scotland (2006) Best Practice Statement: Promoting access to healthcare for people
with a learning disability – A guide for frontline staff. NHS QIS, Edinburgh
24
Telephone interviews – involving three participants who had completed and
returned the questionnaire but had specific issues they wished to discuss further.
More information about the methods applied to the consultation process, recruitment and participation is set out in appendix 1. 2.2 4 Process of analysis Each aspect of the health needs assessment process was analysed separately. A qualitative approach was adopted. The analysis of the data was underpinned by a social model of learning disability which recognises the social barriers, restrictions, and oppression faced by people with a learning disability rather than the individual impairment. 30
30
Seale J, Nind M (eds) (2010) Understanding and Promoting Access for People with Learning Difficulties: Seeing
opportunities, challenges and risk. Routledge, Abingdon
25
Section three Key findings This section is divided into four sub-sections. It begins with an overview of the population profile. A summary of the findings from the consultation exercise with people with learning disabilities and family carers, the nominal group discussions, and the audit follows. A number of recurring themes are then set out before the findings from the different aspects of the health needs assessment are discussed within the framework provided by the five-tired model of care. 3.1 Summary findings from each strand of the health needs assessment process
3.1.1 Population profile
Local figures collated for the eSay National Disability and Autism Spectrum Disorder database managed by the Scottish Consortium for Learning Disabilities provides information about the population in a number of key domains for example age, gender, day care and employment opportunities. However, it is important to recognise that the conclusions that can be drawn from this information are limited. Some of the domains are incomplete, for example the employment status of 19 individuals is recorded as unknown. It is difficult to comment further on this area without more information other than to say that employment opportunities appear to be limited. In other domains the numbers are low and issues around confidentiality mean that it would be inappropriate to present them. However the following statements are pertinent to the health needs assessment process.
Of the 79 adults on the database 49 are male and 30 are female. It is known that
more boys are born with learning disabilities as girls.31
31
NHS Health Scotland (2004) The Health Needs Assessment Report: People with learning disabilities in Scotland.
NHS Health Scotland, Glasgow
26
Age distribution
Age range Numbers
19 - 24 20
25 – 34 22
35 - 44 20
44 - 50 7
50 and over 12
Total 79
Table 1 Age distribution of known adults with a learning disability on the All Age Disability Service register.
Due to limited capacity and availability of expertise in specific areas (as
discussed in section 3.3.4) eight individuals on the register have off island
placements.
A number of day care opportunities are available.
32 clients were recorded as living with a family carer who was a parent. The
numbers are evenly distributed between the ages of 19 yrs – 68yrs. This
highlights the need to look more closely at the needs of family carers as they and
their family member become older.
There is no Local Area Coordination in Orkney. Local area coordination was
recommended by ‘The same as you?’ as a way of supporting people with a
learning disability and their carers to access both formal and informal support.
Local area coordination was also seen as a forum through which people with a
learning disability and their families could influence the development of services.
Key point
The usefulness of the information available through the database is limited.
However it does support the findings from the health needs assessment
regarding the impact limited access to specialist services and local capacity can
have on individuals with additional and complex needs. The lack of general
support to people with a learning disability and their families is also highlighted.
There is a need to consider the future needs of family cares.
27
3.1.2 What people with a learning disability and their family carers had to say
There are a number of positive messages to take away from the consultation exercise with people with a learning disability and their family carers. More respondents were happy with the health care of their family member with a learning disability than were not. Participants identified situations where the actions of health care professionals had been appropriate and timely. Similar scenarios were discussed during the group work with people with a mild learning disability and within the patient stories. Conversely situations where communication was poor and the needs of people with a learning disability were not understood were recorded. The negative impact on some individuals was significant. When asked about their own needs, one carer stated:
„Nothing that would restore my own heath‟ (Family carer questionnaire – Respondent 9)
The experiences recounted during the group work and the patient stories clearly demonstrated that people with a learning disability have the same fears and anxieties as those without a learning disability. However, they may not feel able to articulate their feelings. Others, including health care professionals, may not recognise their concerns. Any subsequent and challenging behaviour born out of anxiety may be misinterpreted as non compliance and attributed to the learning disability. The findings from the consultation exercise highlight the need for training which reinforces the connection between effective communication, capacity and valid consent as well as highlighting the health needs of people with learning disabilities. One family carer made the following comment.
„Some Practice staff use complex language or words which cause anxiety. Medical appointments need lots of support.‟
(Family carer questionnaire - Respondent 15) The findings also suggest that some health care professionals are unaware or feel unable to meet the Board’s legal obligation under equality and diversity legislation.32 As a consequence people with a learning disability face unintentional direct discrimination. Chance was a factor which appeared to influence some of the health care experience of this section of the population. 3.1.3 What service providers had to say
The local picture of unmet health need identified by service providers’ mirrors concerns raised at a national level. There are however, a number of local and geographical factors which impact on the availability of health resources further compromising the ability of individuals with a learning disability to access fair and equitable health care and health outcomes.
32
Equalities Act (2010) What Do I Need to Know? A summary guide for public sector organisations. Government
Equalities Office, London
28
The provision of specialist services to people with a learning disability was discussed. It was noted that they have restricted access to services which are available to members of the population without a learning disability. This situation was considered to be a denial of the individual human rights of people with a learning disability. The findings identified the need to challenge and change the structure of service provision and the way information and resources are shared in response to individuals with a learning disability. The findings also evidenced the need for raised awareness about the health needs of people with a learning disability among health care staff and the reasonable adjustments to practice which should be made based on individual need. The findings also highlighted the need for the development of clear pathways of care and the co-ordination of services. 3.1.4 What the audit had to say
Overall, respondents’ individual responses in each of the areas covered by the audit were mixed highlighting an inconsistent approach across NHS Orkney, Orkney Islands Council and the Voluntary Sector to responding to people with a learning disability. The findings suggest the need for a clear strategic approach across all sectors which would support a proactive response to identifying and meeting the learning needs of staff which is appropriate to their level of involvement. Respondents from across the sectors made reference to information and support which could be accessed through informal support networks. This informal resource however, does not support front line staff who may have to respond immediately to a situation without being aware of the adjustments to their practice which need to be made or have access to readily available resources. Key points
Exploring the view and experiences of people with a learning disability and their
family carers highlighted the inconsistent response of health care services to
their health needs. The views and experiences of service providers support this
assertion and highlight a number of factors which impact on the quality of care.
3.2 Recurring themes
There were a number of recurring themes identified through the health needs assessment process which impact on the extent to which people with learning disabilities have access of to equitable health care and health care outcomes. The concerns discussed within each of these themes can have a negative impact on the provision of care at each of the levels of service provision identified through the five-tier model of care.
29
The areas of unmet need associated with each of the following themes shape the experience of people with learning disabilities and their family carers. The recurring themes were:
being aware
communication
communication, capacity and consent
resources
an inconsistent response
denial
3.2.1 Being aware
Being aware that someone has a learning disability is central to services responding in an appropriate and timely manner. Being aware was an area of unmet health need which was shared across the different strands of the health needs assessment process. The following statements summarises some of the concerns raised.
„Not all people with a learning disability are identified. People slip through the net. Results in social isolation and a lack of social skills.‟
(Nominal group work – CC group, Statement 2)
„Is diagnosis referred to? Knowledge of learning disability is needed so that staff can make reasonable adjustments e.g. appropriate equipment, the right team, timing of appointments etc. Other preparatory work could be undertaken.‟
(Nominal group work - SN group, Statement 11)
A lack of awareness was seen to have the potential to lead to wasted appointment times, unnecessary medical appointments which could lead to distress, ineffective consultations, or failure to attend appointments at all of the levels. Participants made reference to the need for a way of sharing information between people and organisations such as some type of flagging system in the form of a passport. 3.2.2 Communication
Throughout the different strands of the health needs assessment process, knowing how an individual communicates and their level of comprehension was identified as key to engaging people with a learning disability in the health care they may require. People with a learning disability have communication needs that will vary from one person to another. Communication difficulties can act as a barrier to accessing services. Individuals may have difficulty with different aspects of communication for example, comprehension, expression and social conversation. They may also have problems
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with reading. It is important to have the resources available to respond to individual need. The different strands of the health needs assessment highlighted a number of aspects of unmet health need within the context of communication in relation to giving and receiving information with people with learning disabilities, their family carers as well as communication between professionals and organisations.
„...Tools and resources available to general public are not necessarily suitable for people with a learning disability. The „normal‟ adult pathway of treatment may not be appropriate.‟
(Nominal group work - SN group, Statement 7)
„Information needs to be tailored to the individuals understanding. Standard screening information and appointment letters may not be understood which leads to the person not attending the appointment and missing out on the screening opportunity...‟
(Nominal group work - SN group, Statement 8) The importance of sharing information about how an individual communicates with other health care professionals and those from other organisations and sectors was discussed in the nominal groups. However, some participants were sceptical as to the extent professionals would share information. The following statement illustrated this.
. „...People are working in „silos‟ not getting the whole picture or sharing information.‟
(Nominal group work - AHP group, Statement 1) While two thirds of participants who responded to the family carer questionnaire thought that health care professionals communicated well with the person they cared for this was not the case for everyone as the following comments demonstrate:
„Previous GP was awful. I don‟t think it is in anyone‟s interests for GPs and District Nurses to make decisions based on their own ignorance.‟
(Family carer questionnaire - Respondent 19)
„Some Practice staff use complex language or words which cause some anxiety. Medical appointments need lots of support.’
(Family carer questionnaire - Respondent 15) Concern was also raised that health care staff spoke to the carer rather than the person they cared for. This was also identified as a concern in the nominal group discussions
„There is a balance between listening to carers and the person, ensuring the right message is understood.‟
(Nominal group work - SN group, Statement 2)
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These examples demonstrate that health care professionals do not always engage meaningfully with people with learning disabilities. Respondents’ statements drew attention to the inconsistencies in service provision and the factors which impact on this. The potentially negative impact on people with a learning disability was identified. Exploring the concept of communication draws attention to the need for a range of techniques which support the way professionals interact with people with a learning disability in everyday settings. Communication is linked with the concepts of informed choice, capacity and consent. 3.2.3 Communication, capacity and consent
The findings from the different strands of the health needs assessment process highlight the importance of understanding the interconnected nature of communication, capacity and valid consent when responding to people with a learning disability. Health professionals have a key role in ensuring people with a learning disability are able to both give and receive information. People with a learning disability have a right to be made aware that choices are possible and available. However, health professionals may fail to recognise the reasonable adjustments to practice that need to be made in order to empower people with learning disabilities to be actively involved in their health care and make informed choices. The consequence appears to be unintentional discrimination with the potential for poorer health outcomes for people learning disabilities. During the nominal group discussions the following statement was made.
„There is a lack of understanding of learning disabilities. There are many degrees. Some people present with understanding and good language skills, but this may be learned, or based on the assumption of what staff want to hear. The impact is that the person with a learning disability may not be making an informed choice.‟
(Nominal group work - SN group, Statement 3) Conversely it was also noted in the nominal group discussions that there can be a tendency to be over prescriptive. One participant made the following statement:
„People with learning disabilities can be over managed with too many inappropriate services. Individual choice is limited, and professionals may make decisions taking choice away from the individual. There is limited sharing of information about a lack of capacity and consent; lack of understanding about capacity. This is disempowering.‟
(Nominal group work - AHP group, Statement 5)
The statements referring to communication, choice, capacity and consent were interconnected with the knowledge and skills of health care professionals and the availability of practical resources.
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3.2.4 Education and resources
The consultation exercise with people with a learning disability and family carers highlighted the need for more education for health care professionals and those from other sectors, as to the health needs of people with a learning disability and the reasonable adjustments to practice which can be made. This assertion is evidenced through the patient stories which are presented in section 3.3.2 of this report. The views expressed by service providers and through the audit support this area of need. Respondents to the family carer questionnaire were asked for suggestions as to what improvements they would like to see in the care that the health service provides. One respondent stated
„Respect for people with a learning disability and their carers. I am sick of having to deal with staff who have no experience of or understanding of people with a learning disability and the medical/legal issues associated with their care
(Family carer questionnaire – Respondent 19) The possibility that the perceived lack of understanding of health care staff leads to diagnostic overshadowing was raised during the nominal group discussions. It was felt that on some occasions the learning disability itself was considered to be the primary diagnosis. This is an important point as challenging behaviour may mask either physical or emotional ill health; health professionals need to be aware of this. The strain on family carers, paid carers and the individual with a learning disability due to delays in detection of illness were listed as having potentially negative outcomes. 3.2.5 Inconsistent quality of care
Two thirds of those who responded to the health questionnaire felt that their family doctor understood the needs of the person they cared for. However, two of the respondents who felt their family practitioner did not understand made the following comments:
„Which one we have locums‟ (Family carer questionnaire – Respondent 1)
„Depends on the individual GP‟
(Family carer questionnaire – Respondent 15) These contrasting experience draw attention to the inconsistencies in the of quality care experienced by family carers and the family member they care for. As well as geography and the level of an individual health professional’s knowledge and skills referenced in the above comments, transition from children to adult services was also cited as a time when the quality of care varied. The following statement was made during the nominal group discussions:
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„The „chasm‟ expressed by families where transition has taken place from children‟s to adult services‟
(Nominal group work– CC group, Statement 7) 3.2.6 Denial
During the nominal group discussions it was noted that some individuals do not accept they have a learning disability. They do not want a label and the stigma attached to it. It was also noted that a lack of diagnosis may be due to overprotective parents. Denial was identified as leading to major issues for some families. The potential for inappropriate behaviour in social situations, for example the pub, and the consequences was discussed. A lack of understanding or acknowledgement of the learning disability and the impact it could have on an individual’s response to particular social circumstances may lead to an arrest and prison however; in some situations this response may be inappropriate. Key point
A number of recurring themes were identified across the different strands of the
health needs assessment which if addressed would increase the accessibility of
services to adults with learning disabilities living in Orkney.
3.3 Presentation of the unmet health needs – The five-tiered model of care
The findings from the different aspect of the health needs assessment process are now discussed within the framework provided by the five- tiered model of care33. This process provides a practical framework for mapping out the areas of unmet health need and how they might be addressed. The different levels are not mutually exclusive; an individual may be accessing services at all of these levels or any combination therein. Consideration of the findings within and across the different levels highlights the multi – dimensional and dynamic nature of the concept of access and the need to address this area of concern on many levels. The five-tiered model of care takes account of the varied needs in the day to day lives of those with a learning disability as well as specialist help as a consequence of their underlying pathology. The five-tiered model of care facilitates the development of integrated pathways in and through the health care services. Working towards fair and equitable health care and health outcomes for people with learning disabilities is not just the responsibility of the NHS or one particular staff group within the NHS. It is a process which requires partnership working between people with learning disabilities and the NHS, the local council and the voluntary and independent sectors34.
33
Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh 34
Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh
34
3.3.1 Tier 0 – Community, public health and strategic approaches to care
Tier 0 encompasses community based initiatives and services provided through NHS Orkney, Orkney Islands Council, and the Voluntary Sector. Activities in Tier 0 promote the general health and wellbeing of all people with learning disabilities and are delivered by a wide range of personnel who may have no knowledge of learning disabilities or limited contact, through to those with specialist knowledge including paid and family carers. Examples of the activities at Tier 0 would be opportunities presented through education, employment, and social activities as well as public health initiatives and policy development35. The provision of community based support packages and short breaks are also considered within Tier 0. The potential impact of initiatives and services at this level on the overall health and wellbeing of an individual with a learning disability is significant. Key messages form research and identified areas of best practice36
Services must be organised and delivered locally in response to sound evidence
and assessed need.
The promotion of good health and wellbeing must be given wider priority at a
strategic and local level.
Joint working must be a priority.
The findings from the different strands of the health needs assessment drew attention to a number of areas of unmet health need at Tier 0 of the five-tiered health care model.
Limited access to social opportunities and social isolation.
Limited access to appropriate information about keeping healthy.
Respondents to the questionnaire sent to family carers highlighted many of the issues within these broad areas of concern which if addressed would make a difference to the life of their family member. 3.3.1.1 Limited access to social opportunities and social isolation During the nominal group discussions the limited opportunities faced by some groups or individuals, for example those who share specific characteristics or live in a particular geographical location, were identified. Participants’ statements identified a number of factors which can impact on the ability of people with learning disabilities to enjoy an active life and engage fully with the community they live in. A number of statements were quite broad and by implication encompassed a range of unmet health needs. Six broad categories were identified as follows.
35
NHS Health Scotland (2004) The Health Needs Assessment Report: People with learning disabilities in Scotland.
NHS Health Scotland, Glasgow 36
Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh
35
Low expectations – At a societal level it was felt that there was a lack of knowledge
and understanding about learning disabilities and what an individual can achieve
with the right support.
Limited access to social opportunities – The public perception and the stigma
attached to learning disabilities and the lack of integration into mainstream activities
was highlighted as one of the factors limiting social opportunities.
Limited transport – This was identified as a particular problem by service providers,
people with learning disabilities and family carers. The impact was thought to be
greater for those living out of town. Suitable types of transport, the availability of
support to use transport and limited travel training were identified as limiting
individual opportunities.
Availability of locally based counselling provision – Lack of support and
relationships counselling which could help with building relationships, family break
up and bereavement was identified in the nominal group activity. There was
considered to be a lack of general awareness among health care professionals of
the emotional needs of people with a learning disability.
Access to services for specific groups – A number of areas of unmet need at Tier
0 were identified which were specific to particular groups or circumstances for
example, those living on the outer isles, at times of transition, the over 65’s, those
with a diagnosis of Autism, people in their own tenancy, individual in 24/7 care and
those with challenging behaviour. The unmet need related to access to services in
both a physical and psychological manner as well as the lack of provision.
Limited employment opportunities – The group work involving people with
learning disabilities highlighted the important place work can take in the lives of
people with a learning disability in relation to their overall sense of wellbeing and
self worth. During the nominal group discussion the view that there are limited
employment opportunities was expressed. This was directed at local businesses as
well as the availability of sheltered employment. It was felt that there was a token
gesture in Orkney to the issue of employment and that the general public were unaware of potential opportunities.
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3.3.1.2 Limited access to appropriate information about keeping healthy Access to appropriate information about lifestyle issues such as alcohol consumption, diet, physical activity and relationships can support people to make an informed choice and help them care for themselves. However, the lack of appropriate information was identified as a concern during the nominal groups, the patient stories, and the family carers questionnaire as the following extracts illustrate:
„People with learning disabilities may not understand standard health and health promotion resources which then impacts on their health.‟
(Nominal group work - SN group, Statement 8)
He does get information from time to time but it is not easy to assess his comprehension.
(Family questionnaire – Respondent 23) The potential impact was identified as a lack of awareness, increased vulnerability, and the possibility of individuals with a learning disability adopting the wrong lifestyle with links to drinking too much, and concerns about sexual health being expressed. One participant noted that confusion around contraception could lead to an unplanned pregnancy. Respondents to the family questionnaire made suggestions as to what might make information more accessible for example, easy to read leaflets, one to one consultations, a detailed care plan (for carers), group work and DVDs. Key points
Adults with a learning disability are not afforded the same level of social,
educational and employment opportunities as those without a learning disability.
It should be noted however, that some work is ongoing which aims to address
this issue. The input from a health perspective has only recently been provided
through the Equally Well Project.
People with a learning disability have limited access to accessible health
promotion material about healthy living and healthy relationships. This situation
has the potential to impact negatively on their general health and wellbeing.
It would seem that the promotion of good health and wellbeing of those with a
learning disability is not a priority at a strategic and local level.
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3.3.2 Tier 1 Primary care and directly accessed health services
Tier 1 encompasses front line service delivery of universal health services which are often the first point of contact to the health care system. Examples of services at Tier 1 are primary health care services such as General Practitioners, dental services, practice nurses, district nurses, health visiting, and podiatry. These services can be directly accessed by people with a learning disability and their paid and family carers. Services at Tier 1 provide advice support, assessment, and treatment as well access to wider health care services in Tiers 2, 3 and 4. All staff at the first point of contact with a service have a responsibility to ensure that people with a learning disability have equal access to that service. More specific health promotion activity also takes place at this level. While their clinical knowledge, experience and role puts staff working at Tier 1 at the frontline of the delivery of generic health services, they may have limited or no training in relation to learning disabilities. Key messages based on research and identified areas of best practice37
All people with learning disabilities should be enabled and supported
appropriately to access primary care based services.
Improving the health of people with learning disabilities by planned and co-
ordinates health assessment, health education and health promotion must be a
priority.
Planning and practice must be needs based.
Good health enables social inclusion.
The findings from the different strands of the health needs assessment draw attention to inconsistencies in the response of services provided at Tier 1 of the health care model to people with learning disabilities and their family carers. A number of interrelated organisational issues were identified which had the potential to act as barriers to accessing primary care services which were:
Limited understanding of learning disabilities.
Lack of clear policies and protocols.
3.3.2.1 Limited understanding of learning disability The perception that some health care professionals have limited awareness about the health needs of people with learning disabilities was expressed in the nominal groups. .
37
Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh
38
„People with learning disabilities can miss out and health needs take longer to be identified and met. The approach is not systematic; there can be slow reaction times and/or repetition of work‟
(Nominal group work – AADS group, Statement 7) An overall lack of awareness and understanding was identified as reducing opportunities for individual choice. The view that in some cases individuals may experience unnecessary suffering was voiced. The findings from the audit suggested that while there are ongoing awareness and training opportunities around equality and inclusion, activities focused on learning disabilities are limited across NHS Orkney, Orkney Islands Council and the Voluntary Sector.
Limited understanding of learning disability and limited resources
People with a learning disability have a right to be aware that choices are possible and available. Anne’s story provides an account of a situation where a lack of understanding of the needs of someone with a learning disability was compounded by the lack of appropriate resources resulting in a negative experience of health care.
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Anne’s story Anne is a young woman who has a mild learning disability. At a meeting the advocate pointed out to all present, including health professionals, that Anne could not read very well and that information should be presented in an easy to read, accessible format. The advocate suggested to health professionals that they could contact Scottish Consortium for Learning Disabilities (SCLD) for help and advice about best practice in communicating with adults with a learning disability. Health professionals then bombarded Anne with leaflets. The advocate discovered that Anne could not read the leaflets and therefore could not get the information she needed. The advocate contacted the health professionals again and asked for the information to be provided in a format that Anne could understand. The advocate was told a budget would have to be identified for that. A health professional offered to verbally explain the information to Anne but she did not have a good relationship with this professional. Information was not provided other than standard leaflets that anyone would have received. The impact of this on Anne’s situation was profound. Key points
If Anne had sight impairment or had English as a second language she would have received information in a format she could understand. Because she has a learning disability the health services locally were unable or unwilling to provide information in an appropriate format.
Staff did not seem to appreciate that a verbal explanation was not enough and that Anne had a right to have information in a form that she could refer to and that would help her make an informed decision.
This scenario highlights the importance of the relationship between the healthcare professional and the client when there are communication difficulties. A reasonable adjustment to practice would have seen another health professional take over this persons care.
In contrast to Anne’s story, Bert’s story illustrates the positive benefits to the individual
when time is taken to understand the needs of the client with a learning disability and
then applying this when undertaking the required intervention.
Bert’s story Bert is a middle-aged gentleman with a mild learning disability. He is also physically disabled and has mobility restrictions in all four limbs. Although Bert’s speech is compromised, he can make his needs known. Bert has a history of challenging his supporters and services designed to improve his wellbeing. He has been known to withdraw from planned activities. As a consequence of clear support guidelines on how to work alongside Bert he has became confident enough to start to engage with his community once more and all this has to offer in a less challenging way.
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Although his general health appears to be fine, Bert has suffered several dental problems with long term effects of a ‘sweet tooth’ and poor dental hygiene taking their toll.
41
Bert’s story (continued) Bert had the occasional home visit from the dental team to undertake emergency interventions as he refused to attend anywhere publicly for fear of an emotional outburst. Eventually Bert agreed to several tooth extractions and fillings under a general anaesthetic in one visit to Balfour Hospital. He agreed to have two people support him through this event. Information on his history and how he wished to be approached was requested by the dental team prior to his appointment and a pre-visit for information required for anaesthetic was arranged. This event passed without problems. On the day itself, having had a history of challenging behaviour, every effort was made to ensure that Bert had his own private area in which to acclimatise to the forthcoming dental treatment. He had been asked to have ‘nil by mouth’ from midnight before and he willingly agreed to this. Bert was made aware that there would be some waiting time before the treatment began. He remained calm during this time. This was supported by the atmosphere created on the ward – despite it being a busy schedule. Any anxieties shown were those that would be shown by anybody undertaking this treatment. The anaesthetist visited Bert and made himself familiar with his holistic requirements. The process of being anaesthetised and the subsequent dental treatment was explained to Bert. Minutes before he was taken to theatre Bert allowed a gown to be placed on him again reducing the effects of anxiety. Once in theatre, he was introduced to the team undertaking the dental process and the anaesthetist made himself known to Bert again. At this point Bert became anxious and displayed fear and concern over the process – his two supporters, who had been encouraged by the Balfour Hospital to be present, made themselves available to reduce this moment of anxiety. As the anaesthetic became effective, the dental team took over the situation. Once the treatment was complete and Bert had come round from the anaesthetic, he was returned to his ward bed. His two supporters were not present throughout the theatre experience but were encouraged to be on hand in the recovery ward. Despite a comprehensive operation, Bert was positive and asked for a cup of tea and biscuits which were provided – giving Bert the opportunity to see if he could manage both (this not being a normal procedure). He left for his home with clear post operative requirements in easy read format to ensure his safe recovery. Bert spoke positively of his half day experience and this had appeared to reduce his anxieties around medical treatments which were to take place - he has followed through without any fear or anxiety being shown. Key points
Bert’s situation contrasts sharply with Anne’s experience.
Bert was accepted as any other patient requiring dental treatment.
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All of the staff were respectful of his history and attended to his physical, emotional and environmental needs.
Clear and comprehensive information was made available to Bert so that he understood what was going to happen and could discuss this with his supporters.
No pressure was placed on Bert to conform to normal practices if he did not wish to follow them and staff adapted their practice in order to make his attendance a positive experience.
At no time did Bert’s supporters feel the situation was being dealt with inappropriately.
Limited understanding of learning disabilities, capacity and valid consent The level of general knowledge among the workforce around capacity and consent within the context of individuals with a learning disability was questioned in the nominal groups, the family carer questionnaire, and the patient stories. The issues of capacity and valid consent were raised in a general sense and with reference to specific health care situations and lifestyle issues. Ambiguity around capacity and valid consent was identified as restricting individual choice.
Palliative care. The different needs of people with learning disabilities may not be understood. Staff avoid the issue of different provision of care and the future...there is a lack of informed choice about what happens at the end of someone‟s life and the care they get.‟
(Nominal group work - SN group, statement 16)
There is a lack of training for staff and a lack of awareness around capacity and consent issues. Do professionals really know what this means? There is a tendency to over closet or over protect. Staff may be over cautious. There is a tendency to look to the carer for consent.‟
(Nominal group work - AHP group, Statement 11) Catherine’s story provides a practical example of the potential impact on an individual when assumptions about levels of capacity are made.
Catherine’s story Catherine is a young woman with a moderate learning disability. Catherine is an engaging sociable person with a good sense of humour. At the time of turning 17 Catherine needed a particular intervention in order to relieve a long standing problem which flared up intermittently. Until this point Catherine had complied with the intervention which was administered by her mother, a doctor and a nurse on various occasions. On this occasion Catherine was told by a staff nurse at the hospital that she was over 16 and could make up her own mind as to whether or not she agreed to the intervention. Catherine refused the intervention and as a consequence was eventually admitted to the hospital in a distressed and uncomfortable state. This became worse and at one point Catherine thought that she might die. Eventually the decision about whether or not to have the intervention was taken out of Catherine’s hands and a doctor carried out the intervention.
43
Catherine’s health concern occasionally recurs and may have been exacerbated by the events described in this account. This was a significant, traumatic event in Catherine’s life and is still a significant and unhappy memory. If individual health care professionals and social care staff had taken the time to talk with Catherine and assess her capacity to make the decision she did or provide the information she required to make an informed decision then she would not have ended up in total pain and agony for a period of 10 months.
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Catherine’s story (continued) Key points
It would seem that assumptions were made about Catherine’s capacity to consent to or withdraw from treatment were based on her chronological age and her social skills.
As a consequence of the assumptions made about Catherine’s capacity no reasonable adjustments to practice were made. No information was provided in a format that was clear and accessible which Catherine could refer to and discuss.
No connection appears to have been made between the concepts of communication, capacity and valid consent.
Catherine’s family were unable to influence her care and also found the events distressing.
Aileen’s story illustrates the added complications of access to primary health care services when physical barriers also exist. Aileen’s story highlights a level of uncertainty experienced about the role of the health care professional in relation to valid consent with regard to who should take responsibility for stopping a procedure.
Aileen’s story Aileen is a middle aged woman who has a profound learning disability with an associated physical disability. She is non-verbal although she can make her feelings known through the use of her voice and physical gestures. There is a family history of breast cancer. Aileen was invited to attend the mammogram service. Access to the mobile x-ray facility was difficult. Aileen was unable to walk up stairs without discomfort and concern, and had difficulty accessing the entrance door. She required two people to support her walking up the steps. This event left her distressed. Attempts were made by Aileen’s carers to familiarise and desensitise her prior to her visit to the clinic. However, her initial experience of accessing the clinic coupled with the process of being partially undressed, handled by a stranger and the general discomfort of the whole procedure left her traumatised and withdrawing from the investigation. This decision was supported by the carers that had accompanied her. The action taken by her carers was noted on her records. Withdrawing from the procedure has left Aileen in a position where she is unlikely to receive a timely and appropriate response if she develops breast cancer which remains undetected. The health care professionals undertaking Aileen’s mammogram did little to soften the events and establish Aileen’s confidence in their ability to care for her during the mammogram. Key points
NHS Orkney has embraced the need for women aged 50 and over, regardless of disability, to have mammograms and associated investigations which is a major move forward for those with a learning disability.
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A large percentage of women who have undergone this investigation have found the process uncomfortable, undignified, and challenging – how can this level of intervention be relayed to an individual with a profound learning disability?
With a family history of breast cancer what other essential tests or investigations could have replaced such a challenging experience?
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Key points (continued)
Issues of capacity under the ‘Adults with Incapacity Act – 2000’ were raised as a result of the woman’s withdrawal at the advice of those supporting her due to her high level of distress. No supporting person, unless they have been identified as a ‘guardian’ or have been assigned with special responsibilities to make medical decisions, can make such decisions as this could be seen as preventing a necessary medical intervention. The health care professionals did not appear to acknowledge their role and the fact that they should have taken the lead.
Access to the mobile x-ray machine, for people with physical disabilities needs to be addressed for all people with a physical disability.
Greater desensitisation practice would be needed for any future investigation and this would require a clear process of introduction, revisiting, familiarisation, etc., in order to ensure that the examination was a positive experience.
The need for health and other supporting agencies to work together to devise a protocol specially designed to avoid situations like Aileen’s.
It was also recognised that in some situations the person with a learning disability may not understand or be able to cooperate. Individuals with a learning disability may not have the means to make a choice or understand the consequences of a particular choice. The need for GPs (and other health care professionals) to listen more to parents and adults with a learning disability was raised in general terms and identified as an area of unmet need. One participant stated that NHS 24 was not good at this. However, the tendency to rely on family members or carers for the exchange of information between the patient and the practitioner was also questioned. These seemingly contradictory statements demonstrate the confusion and tension that exists around individual choice, the assessment of capacity and valid consent. A number of concerns were voiced in the form of questions, for example, is the description of what is wrong accurate? Does the patient feel they had their say? The confusion experienced by health care professionals can then impact on the choices presented to an individual with learning disabilities. Both Catherine’s and Aileen’s stories highlight the need for clear protocols and policies specific to responding to individuals with a learning disability which support staff to fulfil their legal obligations to take appropriate action. Any discriminatory practice in health care was viewed as unintentional and attributed to presumptions and stereotyping. Key points
The findings from the health needs assessment suggest the NHS Orkney is not
meeting its legal obligation under equality legislation. Access to equitable health
care is more than entering a building or receiving treatment.
Appropriate and meaningful communication is a key component of efficient and
effective health care and valid consent to treatment.
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3.3.3 Tier 2 Health services accessed via primary care
Tier 2 encompasses services accessed via primary care inclusive of specialist primary care services such as specialist nurses in epilepsy or diabetes. Tier 2 also encompasses generic secondary care services such as hospitals which provide in-patient, out-patient, tertiary, and emergency health care. Health care professionals are involved in roles such as investigation, diagnosis and treatment as well as liaison and co-ordination of care. However, staff may have limited experience and knowledge of people with a learning disability and the environment may not be set up in a way that meets their needs. Key messages from research and identified best practice38
Many people with a learning disability have high unmet and unrecognised health
needs.
The assessment and treatment of health needs can be complex, requiring
access to specialist skills.
Partnership working needs to be developed with primary and secondary care and
specialists in learning disabilities to support assessments of health need, to
provide advice and co-ordinate care.
The findings from the different strands of the health needs assessment process identified a number of areas of unmet need which could act as barriers to specialist services, co-ordination of care, and support associated with Tier 2 of the health care model. The recurring areas of concern were:
Sharing information
Lack of clear policies and guidelines
Co-ordination of services and pathways of care
Concern was expressed with regard to immediate care as well as planning for the future. 3.3.3.1 Sharing information During the nominal group discussions participants made reference to the need for a way of sharing information between people and organisation. This was considered as central to ensuring that individuals with a learning disability are responded to appropriately and have access to a full range of services.
38
Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh
48
People with a learning disability are no different from anyone else in the general population and can have a number of concurrent health issues. The potential for treatment for two apparently different issues to adversely impact on an individual’s health and wellbeing when administered at the same time was raised. A person with a learning disability may not be able to communicate what other treatment they are having and carers are not always there. The following statement underpins the need for professionals to take responsibility for being aware and sharing the different aspects of health care needs an individual may have.
„There is a grey area between clinical and dental pathways. The impact each aspect of health is seen in isolation e.g. someone has osteoporosis - is the dental service made aware of it? A patient should be made dentally healthy before they are put on some drug regimes. If not there is a potential for other health problems. What is the review system? There are annual reviews for people with complex needs.‟
(Nominal group work - AHP group, Statement 14) 3.3.3.2 Lack of clear protocols and policies Local policies and procedures can support workers to make the necessary adjustments to their practice in order to accommodate the needs of people with a learning disability. These actions can ease access to services. The written comments of respondent’s to the audit suggest that there is a lack of written policies in some areas. Respondents from across the sectors made reference to information and support for frontline staff which could be accessed through informal support networks. However, this informal resource does not support front line staff who may have to respond immediately to a situation without being aware of the adjustments to their practice which need to be made. Concerns about the lack of clear protocols and policies not only applied to the response of health care professionals communicating with individuals on a one to one basis but also for communication between organisations especially in cases of complex care. 3.3.3.3 Co-ordination of services and pathways of care The co-ordination of services was identified as an area of unmet health need in all of the nominal group discussions. One statement talked about the gaps in provision and the bottle necks in care. During the nominal group discussions it was stated that coordination of services relies on good will and networks. The need to develop a proactive approach rather than the existing reactive or ad hoc approach was discussed in general terms and with reference to specific areas of care. The following statement illustrates participants concerns. Although specific to life threatening illness the sentiments reflected discussions about other more general health concerns.
Pro-active planning is required ... is needed for life threatening illness or terminal care rather than an ad hoc approach. There are planning and legal hurdles. Some medical interventions may be needed in social settings but guidelines are not in place or are difficult to get in place.
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(Nominal group work - SN group, Statement 14) It was also noted that some aspects of care may be taken for granted because an individual is in the care system - this may lead to ambiguity around who is responsible for routine checkups. The following scenario was used to illustrate the potential impact.
„The family may think it is the professional‟s role to make the 2 yearly eye appointment and it may get missed. No one notices that an individual needs glasses. It‟s everybody‟s business but nobody‟s responsibility. Things muddle on‟
(Nominal group work – AHP group, Statement 13) The following three statements encompass some of the other the concerns that were expressed which suggest that the protocols and procedures are not in place which would support effective and efficient care either in hospital or in the community.
„No overall process or agreed model of care to manage people with Learning Disabilities living in the community. Staff are not given adequate information about understanding the patient or which approach to use. Information is not necessarily shared.‟
(Nominal group work - AHP group, Statement 4)
Complex care – No specialist team, reactive not proactive, Co-ordination relies on good will and networks.
(Nominal group work - AADS group, Statement 7)
Co-ordinated health and social care reviews. Information from the single shared assessment is there, but specialist information needs to be collated and pulled together.
(Nominal group work - AADS group, Statement 13) The impact on the health care of people with learning disabilities was identified. It was felt that people with a Learning Disability can experience a limited or disjointed service or a service were input may be duplicated and the health needs not being met. During the self completion Audit one respondent noted.
“It‟s a bit hit and miss, but we do try” (Self completion Audit - Respondent 14 NHSO)
Family carers were unsure as to the extent people shared information. Key points
There is an identified need for better communication between organisations
especially in complex cases.
It was noted that coordination relies on good will and networks.
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The need to develop a proactive approach rather than the existing reactive or ad
hoc approach was discussed in general terms and with reference to palliative
care and dentistry. At the same time areas of best practice were identified within
the dental service.
3.3.4 Tier 3 and 4 – Specialist health services
Tiers 3 and 4 are discussed together as there are no specialist learning disability health services in Orkney. The discussion about the lack of local services also highlights the difficulties experienced by people with learning disabilities and their family carers when accessing specialist services provided by NHS Grampian. Tier 3 encompasses specialist learning disabilities services such as those provided by specialist community learning disabilities teams. Local specialist learning disabilities services are provided through local authorities, NHS and the voluntary sector. Referrals come from Tiers 1 and 2 which also provide support to the services at Tier 3. Services provide advice, assessment, interventions, and treatments for complex specialist learning disabilities health needs. Key messages from research and identified best practice39
Specialist services, including health, must be in place across the complex needs
groups.
Specialist health services have a vital role to play in working with those with the
most complex needs.
Nurses should be core members of specialist teams.
People with learning disabilities, their families and care workers need practical
care, advice and support when caring for those with complex needs.
Tier 4 encompasses tertiary learning disabilities services which are highly specialised and provided through NHS Grampian for example assessment, treatment, in-patient and forensic services. Key messages from research and areas of best practice40
Specialist services need to be in place for the small yet significant number of
people with learning disabilities on an area or region wide basis.
39
Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh. 40
Scottish Executive (2002) Promoting Health, Supporting Inclusion: The national review of the contribution of all
nurses and midwives to the care and support of people with learning disabilities. The Stationery Office, Edinburgh.
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Nurses have skills that should be utilised in the different setting to support people
with learning disabilities in the least restrictive way.
The response of participants throughout the different strands of the health needs assessment underlined the lack of local specialist health care support and the difficulties encountered when accessing services provided through NHS Grampian. 3.3.4.1 Lack of local specialist support During the nominal group discussions the strength of feeling around the lack of local provision of specialist services for people with a learning disability was strong. The negative impact on people with learning disabilities and their families was stressed. Concern about the potential for people having to leave Orkney due to lack of appropriate support was recorded. The following statements made during the nominal group discussions highlight the level of concern.
„People with a learning disability do not have access to acute service provision in psychology and psychiatry. Learning disability is used as the primary diagnosis - „diagnostic overshadowing‟.
(Nominal group work - CC group, Statement 1 & 17 collapsed)
No 24/7 mental health accommodation in the community that supports the transition from acute to community care.
(Nominal group work - AADS group, Statement 5) Linked to the provision of psychology and psychiatry services was ambiguity around who was responsible for making a referral and how to make a referral. Access to clinical psychology was reported to have reduced over the years. With particular reference to psychiatry the apparent lack of purpose, clarity, and feedback that surrounded the clinics held by the visiting specialist was raised. Concern was expressed around medication and the management of changes. The impact of poor management on both local and external placements was noted. Access to forensic services was identified as difficult with availability of personnel with the skills and training to deal with inappropriate behaviour questioned. Reference was made to the single shared assessment, it was noted that they could become disjointed because of the lack of coordinated specialist input. Communication between health and social care was reported as not being as good as it could be. The lack of support available to staff was also raised and it was noted that practitioners may be forced to take on responsibilities they were uncomfortable with for example, managing changing situations and challenging behaviour. Some of the concerns raised by participants were posed as questions for example ‘what happens in the interim while people are waiting for an assessment?’ and ‘Who takes control on the health side?’
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The restricted availability of other specialist services such as support for those with epilepsy was also raised. The general concerns that were voiced echoed those relating to psychology and psychiatry. .
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Ultimately the situation was viewed as a denial of individual rights. One participant noted:
„....People without learning disabilities have access to these services.‟ (Nominal group work – CC group, Statement 1)
In the self completion questionnaire family carers reported that they found access to specialist services difficult. Specific reference was made to clinical psychology and mental health. Waiting times of two and three years were given. When family carers were asked who their greatest source of support was, national organisations specific to the issues experienced by their family member were mentioned. Key points
There is a lack of local specialist support for people with a learning disability and
their family carers. This has lead to off island placements.
Staff can feel unsupported and in limbo when encountering a number of medical
and or social problems experienced by the people with a learning disability that
they care for. Examples such as the onset of dementia, challenging behaviour,
the management of epilepsy and depression were discussed.
3.4 Overall conclusion
The findings from this health needs assessment demonstrate the multifaceted aspect of access to equitable health care and health outcomes for people with a learning disability. A variety of factors, were identified which can negatively impact on their experiences, restricting the opportunity and choice that is available to them and compromising their ability to be actively involved in their own health care. The concepts of opportunity and choice were discussed in general terms as well as in relation to specific services. The lack of locally based specialist services such as clinical psychology, psychiatry and those supporting people with epilepsy was considered to constitute an infringement of their human rights. It was noted that these services were available to the wider population. The findings presented in this report clearly demonstrate that access to equitable health care is not just about getting into a building or being in receipt of treatment. While some areas of good practice were identified and it is evident that the health needs of people with a learning disability are addressed to an extent, it is apparent that some health care professionals are unaware or feel unable to meet the Boards legal obligation under equality and diversity legislation. As a consequence people with a learning disability may experience unintentional direct discrimination as demonstrated by considering the findings within the framework provided by the five-tier model of care.
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This in part reflects the level of specialist support about learning disability that is available to staff, limited access to appropriate resources and the lack of clear protocols and policies built into existing integrated pathways of care. Generic clinical pathways and patient information may not meet the needs of people with a learning disability. Chance was a factor which appeared to influence some of the health care experience of people with a learning disability.
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Section four – Recommendations Six recommendations and associated actions have been made at a strategic and operational level aimed at addressing the areas of unmet need identified through the health needs assessment process. If applied the following recommendations will support the development of an operational environment which would enabled service providers to respond appropriately to people with learning disabilities. The recommendations fall into the following broad categories.
Strategic and operational leadership
Access to specialist services
Monitoring and evaluating change
Awareness raising and training
Specific interventions
Infrastructure
Recommendation 1 - Strategic and operational leadership Any investment in education and the development of appropriate resources to support practice and minimise the risk of unintentional discrimination and potential harm to people with a learning disability will not be effective without the development of a supportive organisational environment. It is recommended that a learning disabilities specialist with a background in learning disability nursing and a proven record of partnership working across the different health and social care environments provided by both statutory and voluntary sector organisations should be appointed. By providing clear leadership at both a strategic and operational level the learning disability specialist will work to establish an environment which promotes and supports the development and delivery of fair and equitable health care and health outcomes for people with a learning disability. It is recommended that a suitable candidate would have generalist skills providing support and advice to generic health care professionals and others across the different sectors, as well as facilitating care planning in complex cases through linking with specialist services as required. In order to support the development and delivery of a co-ordinated service with clear pathways in and through health care services it is recommended that the learning disability specialist becomes part of the managed clinical network. This approach will support the development of workable solutions which support practitioners across the sectors.
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It is recommended that the learning disability specialist should take a lead in developing a multi-agency approach to sourcing and securing funding to support the development of a number of initiatives specific to meeting the NHS Orkney’s responsibilities towards people with a learning disability and their carers. Developed in partnership with NHS Orkney, Orkney Islands Council and the Voluntary Sector initiatives focused on local area co-ordination and the meaningful involvement of people with a learning disability and family carers in shaping the response of services across health and social care, should then be managed through the voluntary sector. Recommendation 2 - Access to specialist services There is a need to develop effective and efficient pathways to specialist service provision, specifically clinical psychology, psychiatry and the specialist epilepsy nurse based with NHS Grampian. It is recommended that the existing links with NHS Grampian forged through the Obligate Network are strengthened in order to explore future developments. It is also recommended that greater use should be made of technology such as video conferencing, telephone conferencing and telemedicine. This approach should address long waiting times and improve the quality of the care experience for those using services and those providing local support Recommendation 3 - Monitoring and evaluating change The quality indicators identified by Quality Improvement Scotland41 should be adopted as a means of measuring the extent to which individual services are meeting the needs of people with a learning disability and following good practice guidelines. The main areas for consideration are:
Awareness raising during the induction period for all staff.
Specific training for those working closely with people with a learning
disability.
The development and use of protocols (inclusive of reasonable adjustments
to practice) and clinical pathways.
Physical resources appropriate to the service.
The availability of easy to read resources and other communication
strategies.
Recommendation 4 - Awareness raising and training It is recommended that the findings from the health needs assessment should be used as the foundation of a training needs analysis informing the development and delivery of 41
NHS Quality Improvement Scotland (2006) Best Practice Statement: Promoting access to healthcare for people
with a learning disability – A guide for frontline staff: NHS QIS, Edinburgh
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a programme of awareness raising and training across health, the local council and the voluntary sector. Different levels of training should be available appropriate to specific groups of service providers and the role they have. Understanding the multi-dimensional concept of communication and specifically communicating with people with a learning disability should be central to health care provision. It is recommended that the relationship between communication, capacity and valid consent is emphasised in any awareness raising activities. It is recommended that the Partners in Communication training provided by the specialist Speech and Language Therapists in NHS Grampian should be rolled out across health and social care. This training programme should be statutory for all health and social care staff working directly with people with a learning disability such as those providing day care services, respite and supported accommodation. Key health personnel would be GPs, nurses working in GP Practices, community nurses, nursing staff at the Balfour, Midwives, and Allied Health Professions who have been identified as having a specific interest in learning disabilities. Recommendation 5 - Specific interventions It is recommended that any future social, educational and general health promoting activities identified under the banner of the community planning partnership should take account of the additional support requirements of adults with a learning disability so that they can have equitable access to the wider social, educational and employment opportunities enjoyed by the general population. Employment - There needs to be a multi-agency approach to the development of job opportunities for people with a learning disability. Key organisations such as Orkney Islands Council and NHS Orkney should look at what they as organisations can do to set an example. Health improvement - Based on the findings from the health needs assessment process it is recommended that NHS Orkney, the local authority and the voluntary sector work together to review and extend existing health improvement strategies identifying the actions which need to be taken in order to include the specific health needs of people with a learning disability. This could be achieved through the health improvement forum facilitated by the Public Health Directorate. This process should be supported by the learning disability nurse.
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Recommendation 6 - Infrastructure It is recommended that administrative systems are reviewed both in health and social care in order to ensure that reasonable adjustments to practice are being made for people with learning disabilities, for example, longer appointment times, timing of appointments, preparation work prior to a medical procedure, home visits if required and easy to read information. Any actions need to be formalised in policies and protocols which support staff to respond appropriately. The identification of individuals who may potentially have a learning disability needs to be standardised across sectors as appropriate. It is recommended that a suitable assessment tool needs to be developed with reference to existing tools and identified best practice which would allow practitioners to gauge an individual’s level of understanding. A pop up note should be attached to electronic files so that someone is immediately identified as requiring additional support in order to attend the surgery.
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Appendix 1 – Different strands of the health needs assessment process
1.1 Audit – a self assessment tool The method applied to this exercise comprised a self completion questionnaire which served as a self assessment tool. The questionnaire was adapted from one provided by NHS Quality Improvement Scotland in their Best Practice Statement (February 2006). A recommendation of this statement was that the resource should be adapted and applied across all Health Board areas in Scotland. The questionnaire was divided into six sections and covered a list of activities and arrangements considered as key to facilitating access to services. The survey was mainly completed by ‘tick box’ answers. Respondents were also invited to make comments at the end of each section. The six sections covered the following:
about you
awareness raising during staff induction
training
arrangements and protocols
physical resources and
information resources A few of the questions were modified or removed in order to reflect the main function of each sector, while the overall theme for each section remained the same. 1.1.1 Distribution of the questionnaire The questionnaire was distributed utilising the web-based survey tool Survey Monkey. Rather than targeting specific individuals or services the questionnaire was made available to a wide range of personnel across NHS Orkney, Orkney Islands Council and the Voluntary Sector. This approach was based on the premise that everyone has a role to play in promoting the accessibility of their services to people with a learning disability. However, not all personnel may have access to the support, information or resources needed to fulfil this role. It was the intention of the survey to capture these varied experiences. 1.1.2 Analysis of the data Analysis of the data involved identifying trends and patterns of responses qualitatively. The sample was not statistically representative and the number of respondents small. Presenting respondents’ responses as a percentage was therefore inappropriate. In cases where over half of respondents had responded positively to a question the ‘no’ and ‘unsure’ responses were combined in order to consider the extent to which this was the majority view/experience.
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Respondent’s additional written comments provided some context around their responses. 1.1.3 Quality of the data There are a number of issues which need to be taken into account when reading this report. The sample was not statistically representative of all employees from across the three sectors. However, the pragmatic approach resulted in a broad range of respondents from front line services and management. Orkney Islands Council has dedicated services for people with learning disabilities which may be reflected in the pattern of responses. However, it cannot be assumed that all council employees have access to appropriate support, training and resources. A few questions were modified dependent on the sector the self completion questionnaire was sent to. The rational applied to each modification is set out under the appropriate question in the report. Written comments provided by those from NHS Orkney and Orkney Islands Council suggest that some respondents responses were specific to their own service and not the organisation as a whole. 1.1.4 Participation NHS Orkney – 17 forms were returned. Five respondents had varied roles within dental services, five respondents were from different disciplines of community nursing, three respondents were General Practitioners, one respondent was an Allied Health Professional, one respondent described themselves as a health professional, one respondent worked in health promotion and one respondent held a management role. Only one respondent from NHS Orkney did not have direct contact with people with learning disabilities in the course of their work. Orkney Islands Council – 33 forms were returned. Respondents were from a wide range of services provided by Orkney Islands Council, inclusive of those specific to people with learning disabilities. 15 respondents worked specifically with people with learning disabilities in a variety of roles at different levels as follows: senior management, social work, senior social care officers and social care officers. Other respondents were from housing (one); education and leisure (including expressive arts, social history, educational psychology, Papdale Halls of Residence, learning choices and the library services) (six); Occupational Therapy (one), finance (two); environmental health (two); youth services (one), residential care homes (one) and a graduate trainee (one). One respondent at Directorate level took part. Two respondents did not record their role.
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Five respondents from Orkney Island Council had not had contact with people with learning disabilities within the course of their work Voluntary Sector Organisations – Seven forms were returned, one each from seven different organisations as follows: Advocacy, Befriending, Enable, Cruise, The Independent Living initiative, Women’s Royal Voluntary Services and the Red Cross. All respondents from the Voluntary Sector had contact with people with learning disabilities in the course of their work. 1.2 Consultation with service providers – Nominal groups The nominal group technique facilitates a structured approach to group discussions aimed at generating ideas, identifying problems and establishing priorities. The process addresses the issue of the dominant voice. Originally developed as an organisational planning tool (Delbecq et al 1975)42, the nominal group technique facilitates a structured approach to group discussions aimed at generating ideas, identifying problems and establishing priorities. 1.2.1 How is a nominal group structured? The group discussion is supported by a facilitator, a scribe and an assistant. It is not the role of facilitator to lead the discussion, question participants’ responses or make suggestion. The facilitator is there to guide participants through the process and help them clarify the points they want to make. The scribe records the ideas or areas of concerns raised by individual members of the discussion group on a flip chart. The assistant ensures that the session runs smoothly by managing the practical arrangements to do with recording participants’ contributions and the voting process. There are five clear stages to a nominal group discussion as follows:
Opening question or statement During this introductory stage the facilitator describes the overall purpose of the discussion putting into the wider context, the process that is about to take place and how the findings from the group discussion are going to be used. The facilitator will then present a clearly defined question focused on one topic that they would like participants to consider.
42
Delbecq A & Van de Ven A (1975) Group Techniques for Program Planning: A guide to nominal groups and
Delphi process. Sage, California
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Silent generation of ideas During this stage participants are asked to record their responses to the question on the paper they have been given. This is an individual activity and no discussion takes place. There is no limit on the number of ideas an individual may record.
Round robin Once participants have recorded their thoughts individually they are invited to share them one at a time and in turn until all of the different views have been expressed. Individual views are recorded verbatim on flipchart paper. Participants are asked to confirm that the recorded statement accurately reflects the view they wish to express. Clarification of ideas There may be some overlap of ideas and participants may negotiate with each other as to whether they are separate or shared points. When appropriate a statement may be modified in order to collapse two statements into one. Participants may also ask each other to clarify statements that may appear open to different interpretations. Participants can not argue against any particular viewpoint being included. Voting and ranking Participants are given voting slips and asked to vote for their top five ideas ranking them 1 – 5 where 1 = least important. The scores for each statement are added up. The score and subsequent rating does not reflect the number of votes a particular view is given but the ranking they receive. When two or more statements have the same total score then the statement with the most individual votes will be ranked higher.
1.2.3 Rationale for adopting the nominal group technique as part of the health needs assessment process A number of advantages associated with the nominal group technique have been identified in the literature. Comparisons have been made with other forms of group discussion for example focus groups and the Delphi Technique. The avoidance of individual participants dominating the discussion and the opportunity it affords all participants to put their view across are common themes when comparisons are made with focus groups. While the Delphi Technique mediates the issues of dominance participants do not have an opportunity to clarify their view or the views of others as it is a quantitative paper and pen exercise. Aspects of the nominal group which are central to its application as part of the health needs assessment is the capacity to generate and document a large number of views from different perspectives, the opportunity to clarify meaning and the identification of priority areas during one session lasting no more than two hours. This is important given the busy workload of participants.
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1.2.4 What modification has been made to the planned groups? A modification was applied to first stage of the nominal group discussions as follows
The question participants were asked to consider was sent out before the group discussion so that participants can gather the views of their colleagues. This approach enabled a wider range of views to be presented, it also save time.
The question considered by the groups was
„From your perspective, what are the unmet health needs of adults with learning disabilities living in Orkney?‟
Participation Group 1 Voluntary Sector Organisations (referred to as the CC group)
Independent Living Project Adult Befriending Service Voluntary Action Orkney CRUSE WRVS Enable Scotland Red Cross Orkney Advocacy Orkney
Group 2 Allied Health Professionals (referred to as the AHP group)
Orkney ADP - Alcohol and Drugs Partnership Community Occupational Therapy (OIC) Community Occupational Therapy and Rehab (OIC/NHS Orkney) Health Promotion NHS Orkney Physiotherapy NHS Orkney Dental Services NHS Orkney
Group 3 NHS Orkney Strategic Nursing (referred to as the SN group)
Community Nursing Midwifery Practice Education Support Audiology
Group 4 All Age Disability Service (referred to as the AADS group) Social Work Department (OIC - One Stop Shop) St Colms Day Centre Glaitness Centre Keelylang Day Centre Aurrida House Glaitness Centre
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1.3 The views and experiences of people with a learning disability A small consultation planning group with representatives from ENABLE Scotland, Advocacy Orkney, All Age Disability Service Orkney Islands Council and NHS Orkney met in order to plan and undertake a consultation process with people with learning disabilities.
1.3.1 Methods People with learning disabilities - Group work and patient stories A mixed methods approach was adopted with the aim of generating qualitative data. The different methods facilitated an exploration of the experiences of those with different levels of need and ability. The design of the consultation exercise comprised individual work within a group setting and patient stories. Group work The format of the group session was influenced by the Person Centred Plan Lifeline approach. This approach was adopted because of the structure it offered and participants’ familiarisation with it. As well as recording the experiences of participants on a wall chart, notes were taken and observations made by a third facilitator. Discussion was guided by the following areas: My health care story How do I see myself when I am well? How do I see myself when I am unwell? What I need when I am well What I need when I am unwell What I would like to see happen Patient stories The stories were told by the individuals themselves, through an independent advocate, social care provider or a family member. The patient stories were set within a framework provided by a series of questions suggested by the NHS Quality Improvement Scotland (2005)43. The questions were:
Think of a time when you/or the person you care for needed a doctor or other healthcare professional
Where did the consultation with the healthcare professional take place?
What happened when the person you cared for met with the healthcare professional?
Do you feel the healthcare professional listened?
Did the person you care for get the help they needed?
43
NHS Quality Improvement Scotland and Scottish Consortium for Learning Disabilities (2005) Improving the
Health of People with a Learning Disability: A guide for NHS services, their partners and advocacy groups: How
people with learning disabilities and their families can be involved in improving the quality of health services. NHS
QIS, Edinburgh
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How did the person with learning disabilities seem during the consultation?
Were you or the person you care for told what would happen next?
What did the health care professional do that helped?
What things were a problem?
What are the key lessons to take from this experience? 1.3.2 Participation The information generated through the different consultation exercises drew on the experiences of people with varying levels of learning disability and health status. Altogether four women and three men were involved in this part of the consultation process. Three individuals took part in the group discussion. Originally six potential participants were identified and invited to take part. One was unable to participate as they had a previous commitment. Of the remaining five, one was unwell and unable to come and one declined. Other potential participants were identified and approached; however, they declined to take part. One of those approached stated that they ‘did not like talking about doctors and that sort of stuff’. 1.4 Consultation with family carers – A self completion questionnaire A self completion questionnaire adapted from the one devised by NHS Quality Improvement Scotland and the Scottish Consortium for Learning Disabilities was used This method was viewed as providing an opportunity for as many family carers as possible to be involved in an unobtrusive way. The questionnaire comprised a series of standardised closed questions minimising the potential for different interpretations by respondents. There was also the opportunity for participants to write comments in order to maximise the amount of relevant information made available. The questionnaire was divided into eight sections. Each section presented a number of specific questions aimed at capturing the perceptions of family carers about different activities and arrangements identified in national documents as key to facilitating access to equitable health care and health outcomes for people with learning disabilities. Potential respondents were offered the option of speaking to the Equally Well Project Nurse either face to face or by telephone. The questionnaire was piloted on three family carers who had a family member with a learning disability and or autism, prior to it being sent out to the wider target population. Due to the small numbers involved it was decided to cover as much of the appropriate population as possible. A total of ninety–eight questionnaires were distributed via Contact A Family Scotland, ENABLE Scotland, the All Age Disability Service and Kirkwall Grammar School. Questionnaires were distributed to Kirkwall Grammar school in order to reach those in transition. Some family members may have received more than one questionnaire from different sources. The letter of introduction which accompanied the questionnaire acknowledged this possibility. Potential respondents were asked to pass on any surplus questionnaires to anyone they knew who should have received one but had not. It is also acknowledged that some families may have
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been missed. Recently collated figures suggest that there are 79 adults known to the All Age Disabilities service and a total of 72 adults recorded on GP Practice list across mainland Orkney and the Isles. Four individuals contacted the Equally Well Project and asked for more information. Two of the four were reluctant to take it any further as they were unsure their contribution, or the process as a whole, would influence changes. Two said they would return their questionnaires although there is no way of knowing if they did. Three participants included the tear off slip requesting a telephone interview with their completed questionnaire. These participants were not from the mainland and were from different islands. 28 questionnaires were returned. However, three questionnaires were returned as having been wrongly addressed and two were put to one side as they appeared to make reference to people who did not have a learning disability but had had an acquired brain injury in adulthood. The information recorded in the report was based on the findings drawn from 23 completed questionnaires. The information from the telephone interviews was included in the discussion at the end. 1.4.1 Profile of respondents and the family member they cared for From the information provided throughout the questionnaire it is clear that those who responded to the questionnaire cared for family members from a wide age range and different levels of learning disability from mild to the more severe and complex cases. It is also evident from respondents’ comments that not all of the family carers were the sole or main carer for their family member. Family carers profile Gender Two respondents to the questionnaire were male and 21 were female. The family carers who requested a phone call were female.
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The age range for those who completed the questionnaire was as follows: Age
Age range Number
35-44 4
45-54 7
55-64 6
65-74 3
75-84 3
Total 23
Table 1 Age distribution of family carers The relationship of the family cares to the family member was as follows: Relationship
Relationship Number
Parent 18
Brother/sister 4
Other 1
Total 23
Table 2 Relationship between family cares and the family member with a learning disability 1.4.2 Profile of the family members with a learning disability Gender 14 of the family members with a learning disability were male and 10 were female. The age range was as follows: Age
Age range Number
16-19 5
20-24 2
25-34 7
35-44 4
45-54 5
55-64
65-74 1
Total 24*
Table 3 Age distribution of family members with a learning disability. *One participant noted they cared for two people.
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Appendix 2 - Five tiered model of health care
The tiered model provides a flexible and visual framework for mapping the different levels of services provided by the different organisations; it also provides a useful structure for developing an integrated pathway and the associated component parts. Adopting this model may also allow comparisons with other geographical areas.
Tier 0 Community resources and supports, housing and support packages, education and learning, employment, public health initiatives and policy development.
Tier 1 Primary health care services, directly accessed services and their supporting services and paid and family carers.
Tier 2 Generic secondary (outpatient and inpatient and tertiary services) health services accessed via primary care services, and their supporting services and paid and family carers.
Tier 3 Specialist learning disabilities services provided by Local Authorities, NHS Scotland, and the independent sector, and paid and family carers in support of these.
Tier 4 Supra-specialist (tertiary) learning disabilities services provided by Local Authorities, NHS Scotland, and the independent sector, and paid and family carers in support of these.
Table 4: A five-tiered model of health care (Health Scotland 2004)
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Appendix 3 – Key knowledge skills and activities The findings from the different strands of the health needs assessment process have highlighted the need for clear leadership and a strategic approach which supports the development of clear communication structures, clinical pathways and a planned proactive approach to care both in a general sense and to more individual, complex cases. The following knowledge, skills and areas of activity have been identified as central to the role of a health care specialist in learning disabilities. 3.1 Areas of knowledge
Knowledge of NHS, social care organisations and the voluntary sector
Knowledge and understanding of clinical governance.
Knowledge of the mental and physical health needs of people with learning disabilities.
Knowledge and awareness of how cognitive impairments distort clinical presentations away from the norm.
Demonstrate a heightened awareness of the connection between communication, capacity and valid consent.
Knowledge of adult and child protection. 3.2 Key skills/approach
Leadership qualities.
Adopt a human rights approach.
Ability to identify and respond to the training needs of health and social care personnel.
Ability to respond appropriately to diverse needs of people with a learning disability and their family carers.
Takes an evidence based approach to practice. Person centred planning
Critical thinking.
Ability to work as a team member of many teams and work alone.
Excellent communication and networking skills.
Provide indirect advocacy for people with a learning disability and their family carers. 3.3 Key activities 3.3.1 Working in partnership
Involvement at different levels in local planning groups.
Link person between organisations.
Link between individuals with learning disabilities and services/triage approach.
Link with family carers and services.
Work as part of a multidisciplinary team. 3.3.2 Physical and mental health care
Promotion of physical and mental well being.
Population approach to unmet health needs.
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Link with local agencies.
Link with GP practices.
Liaison role with acute hospital services.
Input into individual health action plans.
Identify and signpost individuals to specialist assessment e.g. physical health tests, psychological, neurological, and psychiatric.
Develop and implement strategies to address challenging behaviour.
Support and facilitate health education and promotion activities e.g. access to health screening.
3.3.3 Address access issues to services for people with a Learning Disability
Development of tools and resources to aid communication.
Information and advice around care and treatment for people with learning disabilities.
Systems in place which identify people with disabilities who require adjustments to practice which makes it effective efficient and safe.
Identify and promote reasonable adjustments to practice.
Systems to support consent and decision making.
Systems to support information sharing. 3.3.4 Evidenced based care
Link into local clinical governance forums and activities.
Co-ordination of information and evidence from research and other health board areas.
Involvement in research/clinical audit activities.
Health needs assessment activity.
Ensure the views and experiences of people with learning disabilities, family carers and advocates inform activities and developments.
Work to benchmarks of good practice.
Respond to local and national directives. Key point Any investment in education and the development of appropriate resource to support practice and minimise the risk of unintentional discrimination and potential harm to people with a learning disability, will not be effective without the development of a supportive organisational environment which includes a learning disabilities specialist working exclusively for people with a learning disability and their family carers.
