Improving the Whole Patient Pathway - NHS Senate Yorkshire 2C Carer... · 2015. 6. 24. · Jean...

www.england.nhs.uk

Carer Support Chair: Jean Tottie Life Story Network CIC

Well Carer Project

Working together for carer well being

Alicia Ridout & Siân Cartwright

June 2015

Presenter

Presentation Notes

Introduce our selves 2. Exercise: who is or has been a carer (show of hands) who was or is also working and caring (show of hands) – turn to the person next to you and share one activity you personally have let go or put on hold as a direct result of caring. It could be a hobby, something small you like doing for your self. 3. Show of hands if this is something which helped or helps you de-stress, chill out. Carers UK Survey 2015 60% carers felt they could not see how they were going to keep working……. also found 65% carers who did give up work did so as a result of the challenges of juggling work and caring, home and other areas of their lives. 68% used annual leave to carry out caring activities. 50% of those surveyed expected their quality of life to deteriorate. 82% felt it had impacted their health and wellbeing. This level of impact is backed up by other data in the UK and abroad.

Approach

Well Carer Project 2015 3

Presenter

Presentation Notes

Most research and policy documents refer to patients and carers, service users and carers- my experience as a carer was nothing like that of the people I cared for and I often felt lost as a person in my own right. So…. Focus not on caree, person being cared for but just on the impact on the carers.

Background to the project

• Virtuous Circles research project with Carers Leeds and the University of Leeds (part of N8)

• College of Occupational Therapy, Institute of Social Psychiatry funded scoping project

• www.wellcarerproject.wordpress.com


Presenter

Presentation Notes

N8 work – workshops using a framework to rapid prototype solutions usually used in the aerospace industry…. Issues raised during workshops were largely occupational and to do with the impact on carers daily activities So we successfully bid, supported by Carers Leeds, for COT ISP Award funding to run a small scoping study to see how the knowledge and expertise of OTs could be more easily accessed by carers to prevent such a substantial impact on the balance of daily activities, many of which were helpful in managing stress. Discussions with Carers Leeds flagged that there were particular concerns accessing working carers and so it was decided to focus efforts on this group. A wordpress site was set up and blogs outlining the background and project information was uploaded. Over to Sian…

http://www.wellcarerproject.wordpress.com/

Approach

person

environment

occupation


Presenter

Presentation Notes

This diagram represents an OT view of a person with a mismatch in their occupational status. The small overlap means incongruity and imbalance for them as a unique individual – this is a risk to their wellbeing. So this is what we were looking at. SIAN…..

How did we recruit working carers?

• Carers Leeds newsletter plus: Leeds City Council Leeds University Leeds Beckett University • Participants received pre-workshop

information by email or post and via the wordpress site and an £20 M&S voucher


Presenter

Presentation Notes

Carers Leeds led all the recruitment activity and supported carers throughout, offering assessment etc…. Newsletter circulated to 8k people in Leeds but also contacted HR/OD leaders who supported us via their carer registers. Initial contact provided information about the project, what carers might expect and a general discussion focused on any help they might like to support them at that time.

What did we do?

• Ran 2 workshops, plus a follow up meeting with participants who helped shape and edit the final report & recommendations.

• Information was given about: Occupational Therapy Entry level stress management • Group worked together to share ideas and

solutions, issues and challenges


Presenter

Presentation Notes

Each workshop included people caring for a range of people, including dementia and were aged 30-66…. We included tasters of evidence based relaxation techniques and stress management tools We looked at triggers to major changes in their feelings of wellbeing during the caring journey And used a funnel approach to prioritising themes (using 5ww2wb) The outcomes - Alicia used some OT, organisational and well being tools to analyse the results.


Presenter

Presentation Notes

Some of the comments from carers and the occupational impacts… More detail in the report you have….

Highlight points

• Significant issues relating to a loss of aspirations

• Potential areas for future concern re loss of significant activities which were protective

• Numbers of people who had never sought carer support before

• Significant adaptability but hampered in acting on this by a range of factors


Presenter

Presentation Notes

Loss of dreams and work related (economic too) hopes for their own development Protective re health and wellbeing and stress/resiliance Factors: environment, resources, lack of use of their support networks linked to guilt.

What next from OT side?

Presenting the project next week at the national COT conference Further social media discussion about sharing

skills Further exploration of working carers using an

OT tool kit to optimise independence pre-service referral Development of a technology solution


What next – Carers Leeds actions: Monthly working carers support group at Carers

Leeds Develop topic based working carer support sessions

e.g. stress management Bi-monthly appointment sessions for staff carers at

Leeds University Support for staff carers at the Leeds hospitals Access to Carers Leeds services e.g. Dementia Carer

Training, Caring Well course, newsletter, 1-1 support, social activities etc


Thank you and questions? www.wellcarerproject.wordpress.com

www.carersleeds.org.uk

http://www.wellcarerproject.wordpress.com/

http://www.carersleeds.org.uk/

The Value & Impact of Life Story Work with Family Carers

www.lifestorynetwork.org.uk www.hartlepoolcarers.org.uk

Jean Tottie Chair

Life Story Network CIC

Kate Hogan Care Support Worker

Hartlepool Carers

The Life Story Network© (CIC) 2015

Who We Are – Our Story....

We are a network of individuals and organisations dedicated to sharing knowledge and promoting the value of using narrative approaches, including life stories to improve the quality of life and wellbeing of individuals and keeping them connected in their local communities.

14 The Life Story Network© (CIC) 2015

Our Story Continued.......

• Your Story Matters 2011-12 (Dept. of Health Funded) • Training in life story work for 496 health and social care staff,

volunteers and family carers of people with dementia • Piloted ‘Family Carers Matter’

• Your Community Matters - Phase 1 (2013) (Dept. of Health Funded) • Using LSW as a process for connecting with families and the wider

communities • Work more specifically with Housing Sector • Work with Transport companies, including Virgin Rail, Mersey Rail and

some bus and taxi companies • Embedded organisational model

• Links with triangle of care • Value based leadership & practice • NICE guidelines on the Mental Wellbeing of Older People in Care

Homes


‘A diagnosis of dementia is given not just to one person – it is given to a spouse, a partner, a child and the extended

family’ Alistair Burns

Providing timely support, information and respite can make the difference between swimming and drowning

The Life Story Network© (CIC) 2015

16

Why Focus on Family Carers? The ‘Dementia UK’ report (2014) highlights that the

overall economic impact of dementia in the UK is £26.3 billion, working out at an – average annual cost of £32,250 per person. – £4.3 billion spent of healthcare costs, of which

around £85 million is spent on diagnosis. – £10.3 billion is spent on social care for people with

dementia in the UK. – Social care is either publicly funded (£4.5 billion;

17.2% of the overall total cost of dementia) or privately funded (£5.8 billion; 22.9% of the total).

– The cost of unpaid care for people with dementia in the UK is £11.6 billion, working out as 44% of the total cost of dementia.

– The total number of unpaid hours of care provided to people with dementia in the UK is 1.34 billion.

– £111 million is spent on other dementia costs


Our Approach to Using Life Stories

• Helping people tell and capture their stories so that those supporting them understand them better

• Enables the right support to be provided for now as well as future planning, based on what matters to the individual

• More than reminiscence • Any format – whatever suits the person • Builds relationships based on empathy, dignity and mutual respect • Recognises the uniqueness of individuals • Provides a common platform for meaningful communication • Embraces the value of the whole person • Enables individuals to stay connected in local communities and be active

citizens


Using Life Stories with Family Carers

• Piloted in 2012 as part of our initial ‘Your Story Matters’ DH funded work

• Refined it working with family carers in Tyne & Wear • Have now run a number ‘Family Carers Matter’ programmes with

family carers – Tyne & Wear – Rochdale – Halton Borough Council – Liverpool – Mersey Care NHS Trust – Greater Manchester NHS Foundation Trust – Hartlepool Carers Centre


Hartlepool Carers

• Funded by Northern Rock Foundation to train 24 current and former Family Carers in life story work

• Develop a sustainable model by providing further training &

mentoring to carer volunteers • Deliver training to more carers with local volunteers as supporters

to our facilitators


Progress

• Set up multi-agency advisory group • Recruited 23 current & former carers • Delivered two 2 day programmes of training, with a month between

day 1 and 2, to 2 groups of 12 • 18 attended the Day 1 • 12 Completed both days • 5 Carers volunteered for further development • Held first induction training day for volunteers • Planned a further course for 12 carers


Impact of Programme

• Participants completed LSN evaluation each day providing quantitative & qualitative feedback. Comments were provided on quality of the training, the product, its delivery & benefits.

• Participants completed the Adult Carer Quality of Life questionnaire (AC-QoL), published by PRTC, before starting & also on completion of the course.

• Analysis was conducted independently by a PhD student.

• Participants also took part in a narrative interview exercise on Day 2 of the training which elicited further qualitative comments.


Findings

AC-Qol results confirmed the training brought measurable benefits to participants, such as: • spending time with their loved one as a pleasure rather than a chore • by sharing experiences and ideas with other carers, it enabled many

to see their caring role with a fresh pair of eyes • meeting other people who were sharing similar experiences enabled

them to feel less isolated • having more control over their own lives • feeling less frustrated with the person they are caring for and • getting more enjoyment from being a carer


Comments from Carers

• “it’s nice to go home and think it was a better visit today and go home with a smile…it was a pleasure to see her, we’ve found each other again”.

• “I want the rest of my family to understand through life story what mum and dad are all about”.

• “I’m hoping to get the grandchildren involved. I’ll ask them to write memories of granddad and maybe they’ll be more willing to go and see him”.

• “if carers feel good they can help the person more”. Participants were keen to “spread the word” about the benefits of life story work so that it could be implemented elsewhere. • “care home staff should be trained on all aspects of life story work”.


Lessons for the Future • Introducing life story work as a way of improving communication with, and

understanding of, the person being cared for can refresh and restore positive and fulfilling relationships.

• Improving the ability and confidence of family carers to continue providing support and building community capacity through volunteering are essential components in sustaining individualised care and support.

• Empowering family carers with more knowledge & confidence enables them to influence the care being provided by professional staff and become a true partner in care when the person moves in to residential care or is admitted to hospital.

• However, the course confirmed that it can be difficult for carers to participate, even in planned events, because the needs of the person they are caring for change or they are unable to get the expected support to ‘free them up’ for a few hours.


Thank You! Life Story Network CIC - Contact Details

Web: www.lifestorynetwork.org.uk

Telephone: 0151 237 2669

E-mail: [email protected]

Twitter: @lifestorynetwrk


http://www.lifestorynetwork.org.uk/

mailto:[email protected]

Sharing Good Practice The Admiral Nursing Contribution

Wendy Weidner Ceri Hodgkison Business Development Manager Business Development Officer Dementia UK Dementia UK

27

Current Context: What are the Issues?

Growing numbers of people with dementia Majority live in their own homes Growing number of family members providing care estimated

to save the nation £17.4 billion Patchy services and postcode lottery Poor practice High multiple health and social care needs Multi morbidity

28

A ‘Potted History’ of Admiral Nursing

29

Family Experience

Specialist Dementia Nurses

Work in Partnership Family Focus

What do Admiral Nurses do?

Family & relationship centred approach Work in partnership Specialist assessment & evidence based intervention Promote and implement best practice Provide supportive education Provide psychosocial support for the carer and person living with

dementia Liaison with other professionals and organisations Work in consultancy and supervisory role

30

Presenter

Presentation Notes

Admiral Nursing has been implemented into most settings and services now: Primary care GP practices Long term conditions Secondary care mental health services – CMHTs/in patients/memory clinics etc Acute hospitals Tertiary care hospice Care homes Voluntary and not for profit RNBL Joseph Rowntree Various evaluations and perspectives have been drawn. Benefits felt across these different settings with various positive outcomes; e.g. Savings to acute hospital staffing/specialing budgets of over £300 000 in 18 months in one instance; reduced GP call outs in another; delays to care home admissions BUT most frequent outcome is support and services as evaluated by carers. But, where is it best provided? Primary care – most people with dementia are in the community, in ‘primary care land’ and do not require specialist mental health services. Admiral Nurses can facilitate the straddling of the gap between primary and secondary care and across service divides.

Let’s Dispel a Few Myths

Admiral Nurses are expensive Admiral Nurses only work with carers Admiral Nurses and Dementia Advisors provide the same

support

31

A dementia pathway

Pre diagnosis Diagnosis Living with dementia

End of life Grief and bereavement

Supporting families affected by dementia through the trajectory of the disease

32

• Public Health - Promoting awareness • Sharing information • Encouraging assessment • Regular health checks • Health promotion and identifying risk factors • Carer engagement

33

Pre diagnosis

Supporting people through the journey of dementia (1)

• Assessment (and re-assessment/review) • Post diagnostic counselling and support

– Adaptation to diagnosis, readjustment and recalibration as time goes on – Developing resilience in carers – Advance Care Planning – Psycho-social interventions e.g. CST, Couples therapy, etc.

• Nurse prescribing and monitoring • Care management and coordination of services

34

Diagnosis


• Care management and coordination of services • Managing complex conditions

– ‘Translation’ of Behavioural and Psychological Symptoms – Multiple medical conditions

• Psychosocial interventions • Social engagement • Transitions in care • Carer/family support

35

Living with dementia


• Care management and coordination of services • Supporting generalist nurses and clinicians • Symptom management e.g. pain, distress • Palliative support • Carer support

36

End of life


37

Grief and bereavement

• Carer support – Bereavement – Grief counselling

• Supporting carers to pick up their lives again


Cost effectiveness

• Improved outcomes for family carers – Lower levels of depression and anxiety in caring role – Better access to information and supports – Higher satisfaction in caring for family member with dementia

• Improved outcomes for people with dementia – Improved well-being and quality of life – Better access to services and care

• Reduced GP call outs • Reduced inappropriate hospital admissions • Delayed transition to care home • Better support for generalist nurses

38

The Norfolk Model: an Example of Good Practice

Seven GP Practices in mid-Norfolk.

Three Admiral Nurses.

Norfolk and Suffolk Foundation Trust West+ area.

39

What Did They Want to Demonstrate?

Improvement in wellbeing of carers

Impact on diagnosis rates of dementia

Positive impact on other health and social care professionals

Reduced admissions to acute or mental health beds

Reduced/delayed admissions to long term care.

Improved outcomes at end of life

Value for money in achieving Health and Social care targets and requirements

40

Evaluation Methodology

Carer telephone interviews: 37 participants

Peer Questionnaires issued to professionals: 100 issued with a 28% return rate

Data collection from Admiral Nurse cases: data collated from 112 of 230 cases

41

Value for Money

Direct savings of £443,593+

£63,074 Acute Sector

8 mental health hospital admissions (tariff not available)

£20,760 Continuing Health Care

£16,992 (approx) IAPT/counselling

£342,767 Care Homes

42

Indirect Savings

45 people with dementia reported improved well-being

75% carers reported low mood, depression and anxiety prior to support

3 people supported at end of life.

43

Evaluation Conclusion

There was a positive impact on the 7 key areas investigated.

Service outcomes: Carers – “It’s a lifeline”

Professionals – “excellent and vital”

Savings – direct and indirect

44

Next Steps

Extension and expansion of Admiral Nurse service in Norfolk

CCG’s in Norfolk working with Admiral Nurse Consultants to inform dementia

services going forward

Proposed new model of care and pathway derived from findings of the evaluation

Further evaluation of the service over next 12 months

45

46

Three Tier Dementia Pathway

Advantages

Clear pathway for families

Continuity of care

Getting the ‘right help at the right time’ – better experience for families but also

appropriate use of funding

Reduction in families experiencing crisis and unplanned hospital admissions

Increased resilience for families, enabling them to keep loved one at home longer

47

Thank you for listening

[email protected] [email protected]

Admiral Nursing DIRECT: 0845 257 9406 or Email: [email protected]

48








dementiacarer.net

Tom Chrisp Managing Director Arc Research and Consultancy Ltd

Dementiacarer.net

200+ video clips of carers sharing tips and ideas about what helps them. Local services mapped, listed and kept up to date for 5 years. More resilient carers.

Presenter

Presentation Notes

Dementiacarer.net: It is about building resilience particularly among those family carers that do not access support services or voluntary groups and those that are more isolated. So that means it is a practical resource for family carers to help them to cope with the difficult things they encounter Carers living with dementia can sometimes find it a challenge to stay positive, manage frustrations, take breaks, stay healthy, engage professionals, tell friends and family about difficult issues, engage them too, cope with the changes to their relationships, live well themselves and support their loved one … and get the sleep that is needed. There are more than 200 video clips of carers talking about what helps them with difficult things on topics like daily life, negotiating with friends and family, working with professionals, understanding dementia and of course the really important looking after yourself. Local services and activities that might be interesting or useful are listed on the site and there are links to useful information on other sites too.

Presenter

Presentation Notes

Build resilience through broadening the range of ideas, methods and ways of behaving that people have access to about how to cope with the difficult things. Here are a few clips from our sites listings Here is Amanda, talking about using public toilets Wild woman to dare to go into the mens toilets! But by saying she does it it makes it possible to consider and perhaps more legitimate to do. Here is Jim talking about coping with difficult situations All stuff we as professionals can say to people; but somehow it has much more power coming from someone in the same situation; my aunt would be forever annoyed by ‘professionals’ telling you what to do instead of working with you to help you unravel for yourself the ways that work for you. She and many others point to the power of hearing messages from people in the same boat as ‘they really understand’. 200+ clips to build resilience by broadening the range of ideas that people have about what they can do These are resources for professionals to use too to get their message across without forever having to use their own ‘professional’ voice. They can be used to stir up discussion about things that are difficult to address – Why do the lawyers shake their heads and say: ‘sadly people usually come to us too late to address power of attorney issues simply’. Is this discussion difficult for professionals to broach? If so, there are several clips on the site advocating this that could be used to start a discussion. All it takes to use it is a smartphone, an ipad, a tablet, a laptop or a computer.

Who has used this resource so far?

• 1,312 different people • 4+ mins • A third re-visit

Presenter

Presentation Notes

In the first 12 months in this region alone there have been … Globally there have been 7943 visits to the site with 5403 new users and about again about a third of visits being people coming back for a second look. Interestingly the average view time for people outside the region is slightly shorter and we have wondered whether or not the local activities and services being on the site means it has a slightly greater draw for local people. Overall there have been 7574 videos viewed. Dementiacarer.net is now referred to on national websites e.g. NHS Choices for patients and carers and The National Skills Academy for Health and is currently listed on the ‘NHS Fab stuff’ site. The learning materials are also being used by health and social care professionals in their work with their clients. These come from a wide range of disciplines Practice nurses, physios, link workers, social workers, care home staff, voluntary sector dementia professionals, Compass workers. They are being used for staff development too and also nationally 60 NHS, local authority and care home organisations have downloaded material from the site to help train their people to enable them to become more aware of issues facing people with dementia and their carers. We were also intrigued and delighted when the World Health Organisation downloaded these materials for the same purpose. The resource has received plaudits from carers directly to us and in online forums; from professionals who have used them and from celebrities – nice to have (angela rippon and him who won the British Empire Medal and thingy off dinner ladies). National professional bodies for Social work training and the Royal College of Nursing have stated their views about the high value of the resource and use it as part of the training packages being developed. Others in Hospitals, Mental Health Trusts and elsewhere that are developing their own learning materials have incorporated ours into what they are producing. We welcome all of this sharing. It is what we want set out to achieve.

So…..

Thank you !

Presenter

Presentation Notes

To all those that have helped to develop this resource in the region – to the carers who have given their time and thought to research phase and to the development of the video and other material - to the many people, both in statutory and in the voluntary sector organisations, to the brilliant creative people at HydraCreative who worked so hard to get the IT right, and especially to leaders that were prepared to take a risk to try something new, to dare to fail in order to really succeed, So to all those I would like to say a big And Well done! But it is not over. The site will continue to develop and to expand It began here but now covers Nottinghamshire too and there with recent sign ups from the Vale of York and from Bradford and the surrounding area the area specific information will become relevant to more people too. We will continue to expand the range of material and keep it up to date over the next five years so that it remains useful and, as more professionals become aware of it locally we expect that they will refer even more carers to the site. If your area is not involved yet, come and talk to me and we will see if we can work out how to do it.

Dementiacarer.net Watch, discuss and learn from what carers say

www.england.nhs.uk

• Thank you to all our speakers • Presentations will be available on the SCN website –

the link will be emailed to you along with a link to the evaluation survey

• Please return to the main conference room for our closing presentation

• Certificates of attendance are available to collect from the registration desk.

Close and reflections

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Improving the Whole Patient Pathway - NHS Senate Yorkshire 2C Carer... · 2015. 6. 24. · Jean...

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