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Northamptonshire Clinical Commissioning Group 1 Learning Disability Mortality Review Annual Report January 2019-December 2019 V8.0
Northamptonshire Clinical Commissioning Group
1
Learning Disability Mortality Review
Annual Report
January 2019-December 2019
V8.0
2
Version: 8.0
Approved by:
Date Approved:
Ratified by:
Date Ratified:
Name of originator/author: David Loyd-Hearn – Transformation Manager
Name of responsible individual Kate Barker - Deputy Director, Transformation Delivery
Review Date
Target Audience Public, staff and partners
Version Date Who
1.0 13/7/2020 - Bhavini Raikundalia (NCCG) - LAC 2019
- Sue Freeman (NCCG ) - LD Lead Nurse and LAC 2020
- Dr Tom Houseman (NCCG) - GP Clinical Lead (LD, Dementia & MH)
- Kate Barker (NCCG) – Reviewer and LeDeR Group Chair
- David Loyd-Hearn (NCCG) – Lead Author
2.0 2.1 2.2 2.3 3.0 4.0
14/7/2020 - Bhavini Raikundalia (NCCG) - LAC 2019
- Sue Freeman (NCCG ) - LD Lead Nurse and LAC 2020
- Kate Barker (NCCG) - Reviewer and LeDeR Group Chair
- David Loyd-Hearn (NCCG) – Lead Author
4.1 5.0
15/7/2020 - Kate Barker (NCCG) - Reviewer and LeDeR Group Chair
- David Loyd-Hearn (NCCG) – Lead Author
6.0 7.0
16/7/2020 - Kate Barker (NCCG) - Reviewer and LeDeR Group Chair
- David Loyd-Hearn (NCCG) – Lead Author
- Margaret Eni-Olotu – Chair of CDOP (Consultant in Public Health; Children,Maternity & Sexual Health
Document Version Control
3
7.1 8.0
20/7/2020 - Kate Barker (NCCG) - Reviewer and LeDeR Group Chair
- David Loyd-Hearn (NCCG) – Lead Author
8.0 21/7/2020 - LeDeR Steering Group
The Learning Disability Mortality Review (LeDeR) programme is part of a national focus upon improving the lives and care of patients with Learning Disabilities. It has come from a series of important national reports that describe that whilst care in many instances has improved over the last
Foreword
4
decade, many aspects have not. There is still a marked difference between the outcomes of health care for patients with Learning Disabilities, and that of the general population. There is a real opportunity, through the reviews of notes of patients who have sadly died, that future care can be improved for others.
The fundamental reason behind the LeDeR
programme is that we learn from the past to help
prevent avoidable deaths in the future.
Prefacing a report that specifically focusses upon
the individual reviews of deaths that are the
result of a tragic loss for families, is difficult, but
seeking learning that helps another patient’s care
contributes to a positive legacy.
I wish to thank the many people who have helped
provide and curate the information that this report
seeks to summarise, particularly the loved ones
of those patients who sadly died.
Health is improving overall for the people who
live and work in Northamptonshire; however
those improvements are not fairly distributed.
This report examines where we can focus our
energies to try to reduce the health inequalities
and give everyone the same opportunity to
experience these health improvements.
Following the learning from the annual LeDeR
report from 2018, in 2019 Northamptonshire
initiated a series of focused learning events on
prevention to inform citizens, professionals,
parents and carers to reduce inequalities to
present premature deaths. Findings in the 2018
report demonstrated that there were inequalities in
access to choice and control in palliative care for
people with Learning Disabilities. A key quality
improvement was the launch of new resources
and training to support people coming to the end
of their life, the end of the year saw the launch of
the co-produced Northamptonshire Easy Read
Advance Care Plan, recognised by Compassion in
Dying as an example of good practice.
The formidable challenge presented by the COVID
19 incident across the globe began the year of
2020. As we learn more about this disease, we
note the particularly negative impact on both the
learning disability community nationwide, and also
the significant impact on black, Asian and minority
ethnic (BAME) communities. It is with relief that
there were no local increases in premature deaths
amongst BAME learning disabled people, but the
lessons learned nationally will reflect our work to
ensure we support people to be as healthy and
live as good a quality of life for as long as possible,
As we have to imagine new ways of working in the
light of Covid-19, let us take the opportunity to
make reducing inequality for people with Learning
Disabilities, some of our most vulnerable citizens’,
one of our key priorities moving forward.
Document Version Control .................................................................................................................... 2
Foreword ................................................................................................................................................ 3
Introduction ............................................................................................................................................ 7
Dr Tom Howseman GP Clinical Lead (LD, Dementia & MH) Northamptonshire Clinical Commissioning Group
Contents
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Figure 1: Notifications of death by year ............................................................................................. 7
Chapter 1 Background......................................................................................................................... 10
1.1 National Context ........................................................................................................................ 11
1.2 Local Context ............................................................................................................................ 11
1.1.1. Prevalence of disability in the adult population of Northamptonshire .............................. 12
1.1.2. Recommendations ......................................................................................................... 12
Chapter 2 The LeDeR process in Northamptonshire......................................................................... 13
2.1 The scope of the local reviews of deaths ................................................................................... 14
2.2 Process ..................................................................................................................................... 14
2.3 Steering Group .......................................................................................................................... 14
Chapter 3 Findings from the Northamptonshire LeDeR Programme ............................................... 16
3.1 Deaths notified in Northamptonshire to the LeDeR programme ................................................. 17
Figure 2: Summary of adult deaths from the start of the programme until 31 December 2019 .. 17
3.2 Monthly Notifications and Completed Reviews Jan to Dec 2019 ............................................... 17
Figure 3: Northamptonshire Monthly Notifications and Completed Reviews (MAT) .................. 17
3.3 Northamptonshire, East of England and National Variations – Demographic Overview ............. 18
Figure 4: Demographic Data Comparisons ............................................................................... 18
3.4 Cause of Deaths ....................................................................................................................... 19
Figure 5: Cause of Deaths........................................................................................................ 19
3.5 Quality of Care .......................................................................................................................... 19
Figure 6: Grade of Care Descriptions ....................................................................................... 20
Figure 7: Grade of Care Chart .................................................................................................. 20
Chapter 4 Northamptonshire Learning into Action – Recommendations and Next Steps to Improve Health Outcomes ................................................................................................................... 21
4.1 Common Themes ...................................................................................................................... 22
4.2 Good practice examples from completed reviews ..................................................................... 22
4.3 Outcomes & Impact ................................................................................................................... 22
Chapter 5 Objectives and Plans for 2020 - 2021 ................................................................................ 29
Chapter 6 Conclusion .......................................................................................................................... 31
Appendices .......................................................................................................................................... 33
Appendix 1: Longer Lives for Learning Disabilities Roadshows – February 2019 ............................ 35
Appendix 2: Easy Read Advance Care Plan ................................................................................... 37
Appendix 3: Demographic Data....................................................................................................... 38
Figure 8: Approximate number of adults with a disability in each borough/district from the Northamptonshire Joint Strategic Needs Assessment: ............................................................. 38
Figure 9: National POPPI and PANSI Data June 2020 ............................................................. 38
Appendix 4: Terms of Reference for the LeDeR Mortality Steering Group (September 2019) ......... 39
Appendix 5: Action Plan as at March 2020 ...................................................................................... 42
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Appendix 6: Northamptonshire LeDeR Process Map ...................................................................... 46
Appendix 7: Northamptonshire Learning Disabilities and Autism Governance Map ......................... 47
Appendix 8: Links to Resources and Further Reading ..................................................................... 48
Appendix 9: Glossary ...................................................................................................................... 49
Appendix 10: For more information about LeDeR ........................................................................... 50
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This is the first annual report in respect of Northamptonshire’s activity and findings relating to Learning Disability Mortality Review (LeDeR). The report has been produced by Northamptonshire Clinical Commissioning Group (CCG) as required by the ‘The NHS Long Term Plan January 2019’.
This is the first annual report in respect of
Northamptonshire’s activity and findings relating
to Learning Disability Mortality Review (LeDeR).
The report has been produced by
Northamptonshire Clinical Commissioning Group
(CCG) as required by the ‘The NHS Long Term
Plan January 2019’. This report looks at the
impact on adults with learning disabilities for the
calendar year of 2019, in line with all the national
reporting for points of comparison, and the
emergence of the COVID-19 Pandemic in 2020,
this report also seeks to highlight some of the
early impact of the incident and the lessons
learned in Northamptonshire’s response.
People with a learning disability continue to die
prematurely and of preventable conditions.
The 2019 NHS England Long Term Plan
recognises that this needs to be addressed.
• Action will be taken to tackle the causes of
morbidity and preventable deaths in people
with a learning disability
• The whole NHS will improve its understanding
of the needs of people with learning
disabilities and autism, and work together to
improve their health and wellbeing
At the commencement of the LeDeR programme
in 2017, NHSE gave a predicted number of 34
for the expected number of deaths for
Northamptonshire for the population of people
with Learning Disability. The actual number of
deaths far exceeded the initial prediction; this is
in common with other CCG localities. This
created a real challenge in relation to the number
of available reviewers locally and managing the
reviews in a timely expectation. At the end of
2019, there had been a total of 66 notifications
from the commencement of the programme on
the 1st September 2017 and up to the 31st
December 2019, 30 within the 2019. This
accounted for 1.4% of the national LeDeR
inclusive deaths . Northamptonshire has 1.4% of
the population of England within its borders, and
therefore this is proportionate to the indices
nationally and does not appear to be a significant
deviation.
Figure 1: Notifications of death by year
Introduction
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It became apparent that to maximise the potential of the programme, there were a number of challenges that needed to be overcome and the systemic lessons learned included: Ensuring capacity for the LAC to develop the
programme
Whilst a large number of reviewers were initially trained from within local services the availability was very limited due to demands of the day job
The level of demand for reviews exceeded the anticipated forecasts and this led to a backlog
The need to ensure robust governance and assure the process to assuage concerns from primary care in relation to the ownership and release of the deceased patient case notes
Learning from the initial experiences of the programme, Northamptonshire committed to enhance the capacity and our approach. In June 2019 the CCG developed and recruited to the role of Transformation & Commissioning Programme Manager which allocated half of their working week dedicated to being the LAC for the LeDeR programme. This role was supported by dedicated time from the CTR/ LeDeR Administrator. As a result, over the last year there has been significant improvement in both performance and quality.
Over the past year the following has improved:
1. Development of increasing the capacity and knowledge of independent reviewers with dedicated focus has enabled timely allocation and completion of quality reviews;
2. Northamptonshire put forward reviews to be completed in the backlog project. A backlog project was commissioned by NHSE to a commissioning support unit to complete reviews of those deaths that were notified before January 2019 which has enabled the system to catch up;
3. Raising awareness and promoting the LeDeR process with provider organisations,
4. Clear consistent engagement with quality and safeguarding within the CCG and County Council;
5. Relationships with GP surgeries to enable timely access to clinical notes
6. Providing a robust support network for both existing and new reviewers;
7. Enhancing information sharing systems with GP practices and local authorities,
8. The Acute Trusts have embedded Learning Disabilities Strategic Health Facilitators (lead nurses) into their services, governance and quality systems to improve the outcomes for patients.
9. Designated Primary Care Strategic Health Facilitators have improved the confidence and competence of GPs, Nurses and support staff to support Annual Health Checks, Reasonable Adjustments and look at key areas of interest such as Diabetes Care.
10. Within Northamptonshire Foundation Trust
(Community Services such as Learning Disability Health, Occupational Therapy, Speech and Language Therapy, Mental Health etc., key highlights include:
The dementia, epilepsy and challenging behaviour pathway developed and partnerships involved
The Stop Over Medicating People with Learning Disabilities and/or Autism Programme (STOMP) has continued to raise awareness among professionals, people with learning disabilities, their carers and families, including making every contact count at various clinics
Dysphagia pathway has developed with training to providers and have a skilled service and dietetics too. They regularly distribute health leaflets and positive practice health promotion for sepsis, flu immunisations, breast and testicular exams etc
11. A new Easy Read Advance Care Plan and
workforce training launched in December 2019 with the aspiration for more people on the end of life pathway to be able to have a better degree of choice and control in relation to personalised palliative care.
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12. improved involvement and engagement working with local groups such as Get on Board and Mencap as well as conducting a roadshow across Northamptonshire so health and social care leadership members could better engage with services users, parents and carers.
13. The Expert by Experience led Quality
Checker Service improved their outcome based monitoring and highlighted key areas of best practice as well as providers that required additional support. Having people with lived experience monitoring services is a key lynchpin to supporting prevention and early intervention as they test providers on their knowledge of health issues and pathways.
14. The Autism Advisory Panel and Autism
Champion Network have worked together on Action Groups to improve communications, training, systems and pathways and reasonable adjustments across the system to reduce barriers to access.
15. The Learning Disabilities and Autism
Provider Forum was established to improve communication and training with providers, coproducing a new shared outcomes framework across health and social care, as well as undertaking a number of training sessions focusing on quality, safeguarding, to heighten the awareness of risk factors for early death and how to mitigate the risks through prevention and early intervention.
As a direct result the CCG’s are able to respond in a timely fashion and do not have a waiting list of reviews to be allocated and the notifications received into the area as they are able to be allocated within the specified timescale. At the end of 2019, Northamptonshire launched an Easy Read Advance Care Plan to improve the quality of care people with learning disabilities can expect where they are requiring hospital treatment or palliative care. With the aid of funding from Health Education England, a new easy read resource was co-produced with end users and a panel of professionals, with input from the
voluntary sector and highlighted by Compassion in Dying as an exemplar. 23 professionals were trained across the health and care system to support the roll out of the new resource in December 2019. Where deaths are anticipated, a compassionate approach can be used to ensure dignity and aim to give people with learning disability a choice of where they choose to spend the rest of their lives. Initiatives such as these support our continued commitment to improve the whole life journey in Northamptonshire.
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Chapter 1 Background
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1.1 National Context
People with a learning disability experience significant health inequality when compared to the rest of the general public. To put this into context the life expectancy for people with learning disabilities in 2020 can be equated to what the rest of the general public could have expected in 1940. Today, people with learning disabilities die, on average, 15-20 years sooner than other people in the general population. These health inequalities are not inevitable and can be addressed by preventative and/ or timely healthcare in the community. Whilst progress has been made there is still much to do to address the health inequalities for people with learning disabilities. The Learning Disabilities Mortality Review (LeDeR) Programme was established as a result of one of the key recommendations of the Confidential Inquiry into the premature deaths of people with learning disabilities (CIPOLD). CIPOLD reported that people with learning disabilities were dying sooner than they should. The LeDeR programme is delivered by the University of Bristol, was commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England. It was initiated alongside the introduction of the national Learning from Deaths framework in England 2017. The aim of the programme is to drive improvement in the quality of health and social care service delivery for people with learning disabilities and to help reduce premature mortality and health inequalities in this population, through mortality case review. The programme has been developed to review deaths of people with learning disabilities aged 4yrs and over. An initial review is undertaken in all cases of a deceased person who is diagnosed with a learning disability. If an area of concern is identified during the initial review, or it is felt that further learning could be gained, a full multi-agency review will be undertaken. These reviews are intended to support health and social care professionals, and policy makers to clarify the contribution of various causes of death to the overall burden of excess premature mortality for people with learning disabilities; identify variation and best practice; and identify key recommendations for improvement. This vital learning assists professionals and partner agencies to make decisions to continue to improve quality, knowledge, and most importantly improve
life chances for the whole of our learning disabilities community. For more information visit www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf
1.2 Local Context Latest estimates (mid-2016, ONS) put Northamptonshire’s population at 733,128 people (all ages) in 2016. It is estimated that the county has had above (national) average population growth in recent decades. In the last 30 years the population of Northamptonshire has increased by just over 30% compared to a 16.8% England average. Most recently, the highest rates of population growth in the county have been in Corby (also high for the country) and, as such, the town is projected to experience the greatest percentage increase in the county over the next 10 years. By 2024 it is projected that the population of Northamptonshire will have grown by approximately 9%; faster than the projected 7.5% increase for England. The greatest proportional increases by age are projected to be amongst the:
10-19 year olds (early 2010s spike in fertility rate)
In terms of dependent groups, it is estimated that Northamptonshire has a slightly higher than England average proportion of 0-19 year olds. However, the proportion of young people aged 0-19 within the population is projected to decrease slightly (despite numbers of young people increasing), in the next 10 to 20 years.
The latest data (2015) shows the live birth rate as being slightly above the England average (12.52 versus 12.10), driven by well above average rates in Corby, Kettering and Northampton. Northamptonshire’s General Fertility Rate has been consistently just above the England average for the last 10 years.
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In 2011, 12.6% of Northamptonshire’s population aged fewer than 18 years were from black and minority ethnic groups. This proportion is likely to have changed since. In 2017, the population of 5-16 year olds in Northamptonshire was 111,803. Based on the most recent prevalence estimates published by Public Health England (2015), 3,913 of these children and young people can be expected to have an emotional disorder, 6,149 can be expected to have a conduct disorder, and 1,677 can be expected to have a hyperkinetic disorder. The high prevalence of conduct problems has led local services to prioritise how the needs of these children and families are met. Based on 2017 population estimates, 19% of Northamptonshire’s population aged under 18 years live in areas ranked the 20% most deprived nationally. There are local inequalities in deprivation between districts. South Northamptonshire has no areas ranked in the 20% most deprived nationally, whereas in Northampton 32% of under 18s live in such areas, which is the highest level in the county. Of Northamptonshire’s urban districts, which tend to be more deprived, Kettering had the lowest proportion of under 18s living in deprived areas at 15%.
1.1.1. Prevalence of disability in the adult population of Northamptonshire Around 17.5% of the UK adult population have a disability. In Northamptonshire, around 21% of the adult population have a disability. This amounts to almost 116,000 people. Around 2.3% of the adult population have a learning disability; around 18.4% have a physical disability. Compared to the Northamptonshire average, there are higher proportions of physically disabled people in the boroughs of Wellingborough, South Northamptonshire, East Northamptonshire, Daventry and Kettering (in that order, starting with the district with highest proportions). Northampton Borough has the lowest proportion of physically disabled residents but, being the largest populated borough, has the highest absolute numbers. The proportion of adults with a learning disability is similar across all the boroughs/districts. Numbers of adults with a learning disability in Northamptonshire are predicted to increase from
13,076 in 2015 to 14,106 10 years later. In the subsequent 5 years to 2030, numbers are expected to rise by another 500 or so to 14,689. Younger adults aged 18-64 make up the majority of adults with a learning disability in Northamptonshire, but the figure shows that the older age group, 65 and over, is the one that will grow by the most over the next 10 and 15 years. The number of younger people with a moderate or severe learning disability is expected to increase by around 100, the number of older people by around 150 by 2030.
1.1.2. Recommendations In reviewing the Northamptonshire Joint Strategic Needs Assessment, there are some key areas to develop further:
Improve data across statutory services to address the potential gaps to ensure that there are no barriers to access services
Identify more detailed demographic information including protected characteristics such as ethnicity, sexual orientation, age, comorbid conditions, economic deprivation etc
Work with the Learning Disability and Autism Strategy Board to request a refresh of the Joint Strategic Needs Assessment (JSNA)
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Chapter 2 The LeDeR process in
Northamptonshire
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2.1 The scope of the local reviews of deaths
The LeDeR Programme will support reviews of deaths of people with learning disabilities aged 4 years and over;
The Programme will support reviews of all deaths, irrespective of the cause of death or place of death; and
The following reviews will take precedence over local reviews: Serious Case Reviews (SCRs), Safeguarding Adult Reviews (SARs), Safeguarding Adults Enquiries (Section 42 Care Act) Domestic Homicide Reviews (DHRs), Serious Incident Reviews, Coroners’ investigations, Child Death Overview Panel (CDOP) and Mothers and Babies: Reducing Risk through Adults and Confidential Enquiries (MBRRACE).
2.2 Process The local process is as follows:
An individual between the ages of 4 and 100 with a learning disability dies;
Anyone first aware of this notifies the LAC and is asked to complete a notification form by accessing the notification system at https://www.bris.ac.uk/sps/leder/notification-system/;
The CTR/ LeDeR Administrator requests notes from the GP and other services involved
The LAC assigns the notification to a reviewer
The reviewer assigned then reviews the GP notes, notes from community teams and provider notes. They engage with the providers that were involved in the care, Strategic Health Facilitators if the
individual passes away in hospital as well as engaging with the family. They write a report and conclude with a set of recommendations around prevention, care and reasonable adjustments, etc.:
The report is ratified by the LAC and other clinical quality professionals; and if it meets the threshold an MDT meeting will take place; and
The recommendations are then incorporated into the learning and recommendations into the local action plan.
2.3 Steering Group The governance of the LeDeR programme
is overseen by the Northamptonshire Learning Disability Mortality Review Steering group, meeting four times a year. The Deputy Director of People, Personalisation and Integration chairs the group, and is also the Senior Responsible Officer (SRO) for the Learning Disabilities Strategy and Action Plan. The group members include:
Mortality leads from the acute and secondary health services
Quality Assurance Lead – Public health
Head of Quality and Nursing – CCG
LD Commissioners across children and adults, health and social care
Strategic Health facilitators, acute and primary care
Assistant Director – Specialist and Complex Working Age Adult Services (Local Authority)
Service Manager - Children First Northamptonshire (Local Authority)
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The Local LeDeR Area Coordinator There are other representatives we will be seeking such as a Reviewer Representative, a GP, a parent/carer rep and Healthwatch. The purpose of the group is to:
Oversee the progress of the overall
programme, its delivery and ensure its
findings leads to action and the
recommendations are embedded within
stakeholder agencies;
Support and provide guidance on the
direction of the programme and its success;
Provide a forum for discussion and support
for the proportionate review of all deaths of
people with learning disabilities in
Northamptonshire and those which are
classed as priority themed reviews;
Review and comment on the regular updates
received from the Local Area Contact of the
progress and findings of reviews and
delivery of the overall programme;
Help interpret, analyse and critique the data
and information submitted from local
reviews, including areas of good practice in
preventing premature mortality, and areas
where improvements in practice could be
made;
Identify and agree priorities for Northamptonshire’s LeDeR action plan as a result of the reviews of deaths and steer the programme of appropriate actions as a result of such information;
Oversee and monitor the action plan developed;
Help guide the development of recommendations and provide advice on issues that affect service users;
Review anonymised case reports pertaining to deaths or significant adverse events
relating to people with learning disabilities for publication in the LeDeR programme repository in order to contribute to collective understanding and guiding of learning points and recommendations across cases; and
Work with NHS England to implement National directives.
Develop our training and development plans to improve quality based on the lessons learned
The Steering Group reports to the Learning
Disabilities and Autism Transformation
Assurance Board and the Local Authority Adult
Safeguarding Board
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Chapter 3 Findings from the Northamptonshire LeDeR Programme
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3.1 Deaths notified in Northamptonshire to the LeDeR programme
In June 2019, the national LeDeR programme separated the reporting of review progress for child deaths
from those of adults, Northamptonshire implemented the change with immediate effect. Since the
commencement of the programme up to the end of December 2019 there have been 66 reported deaths of
adults with learning disabilities in Northamptonshire. Rather than being subject to a full LeDeR review, child
deaths are now reviewed by CDOP with input from a LeDeR reviewer or LAC. The LeDeR programme is
monitored by the calendar year as opposed to financial year that most programmes are based upon in the
NHS, therefore Quarter 4 ends on the 31st December. Below are a summary of adults’ deaths in
Northamptonshire and a breakdown of status at the end of 2019.
Figure 2: Summary of adult deaths from the start of the programme until 31 December 2019
Total notifications 66
Notifications not yet assigned to a reviewer:
15*
Completed reviews: 25
Completed reviews in the final quarter of 2019:
11
Reviews awaiting sign-off by a Local Area Contact (LAC):
0
Reviewers trained: 14
*please note these have now been allocated, unless awaiting a coroner update
3.2 Monthly Notifications and Completed Reviews Jan to Dec 2019 The graph on the following page shows the pattern of reported deaths and review activity on a monthly basis for the last year:
Figure 3: Northamptonshire Monthly Notifications and Completed Reviews (MAT)
Jan-19 Feb-19 Mar-19 Apr-19 May -19 Jun-19 Jul-19 Aug-19 Sep-19 Oct-19 Nov -19 Dec-19
1 1 1 1
3 3
4 4
6
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In each year of the programme, there have been peaks and troughs commensurate with the seasonal
changes, with peaks presenting twice a year; in the winter and summer. These will support to inform our
flu prevention work in 2020 and beyond
3.3 Northamptonshire, East of England and National Variations – Demographic Overview The chart below compares of all deaths notified in Northamptonshire with regional and national data:
Figure 4: Demographic Data Comparisons
Northants.
Last 12
months
(Jan - Dec' 19)
(n=24)
Midlands
Last 12
months
(Jan - Dec '19)
(n=621)
England
(Jan - Dec 19)
(n=3060)
England
(Jan - Dec 18)
(n=2926)
No. % % % %
Gender
Male 19
79% 61% 57% 58%
Female 5 21% 39% 43% 42%
Total (known) 24
(n=618) (n=3051) (n=2916)
Age group *
Under 55 8 33% 40% 37% 37%
55 – 64 11
46% 23% 25% 25%
65 and over 5 21% 37% 38% 38%
Total (known) 24
(n=619) (n=3043) (n=2915)
Median age at death 60
60 60 60
Place of death *
Hospital 11
46% 58% 58% 62%
Other 13
54% 42% 42% 38%
Total (known) 24
(n=587) (n=2927) (n=2803)
The LeDeR Mortality group have noted for a second year, there have been no notifications of deaths for people with learning disabilities from the black, Asian or minority ethnicities (BAME). It will be interesting to see how the trends manifest themselves through the COVID experience of 2020. Northamptonshire recognise the higher levels of risk to both people with learning disabilities and members of the BAME public.
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Therefore we will continue to raise awareness amongst the workforce, our learning disability and autism support organisations, and cultural/religious communities.
Once again, Northamptonshire follows the national trend of the majority of deaths being before the age of
65.
3.4 Cause of Deaths Of the 24 reviews conducted in 2019 the two most common causes of death were:
1. Pneumonia – Accounts for 21% of deaths, this is slightly lower than the national average
2. Cancer - The local percentage in relation to cancer is 21% which is considerably higher than the national percentage of 14%.
Other most common causes were aspirational pneumonia and cardiac arrest, both reflective of the national averages of 17%. The rest of the causes were very low in numbers in comparison. Sepsis (4%) was a lot lower than the national average of 11% The top 5 causes of death is reflective both for the findings within the last National LeDeR report and of the local population for Northamptonshire.
Figure 5: Cause of Deaths
3.5 Quality of Care It is important that if we are to change practice, the feedback of the good practice and areas for improvement are explored. The chart below shows the grade and criteria for measuring care when having feedback from those involved in LeDeR reviews and the score achieved during 2019.
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Figure 6: Grade of Care Descriptions
Grade of Care
Description No
1 This was excellent care (it exceeded current good practice). 1
2 This was good care (it met current good practice in all areas). 16
3 This was satisfactory care (it fell short of current good practice in minor areas, and no significant learning would result from a fuller review of the death).
4
4 Care fell short of current best practice in one or more significant areas, but this is not considered to have had the potential for adverse impact on the person and no significant learning would result from a fuller review of the death
4
5 Care fell short of current best practice in one or more significant areas, although this is not considered to have had the potential for adverse impact on the person, some learning could result from a fuller review of the death
2
6 Care fell short of current best practice in one or more significant areas resulting in the potential for, or actual, adverse impact on the person
0
Total 27
It is reassuring that 78% was rated satisfactory and above, with the majority being good however it is important to note that 22 % fell short of satisfactory practice. Where the care fell short of satisfactory practice none were deemed to have an adverse effect on the individual. The lessons learned from this feedback have formed part of the action plan for 2020.
Figure 7: Grade of Care Chart
1 excellent
2 good
3 satisfactory
4 fell short
5 fell short significant learning
fell short potential or adverseimpact
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Chapter 4 Northamptonshire Learning
into Action – Recommendations and Next
Steps to Improve Health Outcomes
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4.1 Common Themes
1. There remains the need to increase the number of Learning Disability Annual Health Checks for
the LD population across Northamptonshire. The use of reasonable adjustments is a priority focus
within the action plan. This includes looking at communication and behaviour presentations,
ensuring material is understandable and service users are comfortable to engage with services.
2. A common theme across all mainstream services is the need for increasing the confidence and
competency in working with people and their families in relation to the Mental Capacity Act (MCA)
framework. Better recording of decisions made is also an area for improvement as it is often
difficult to identify if a formal capacity assessment has taken place prior to decisions being made
and whether best interest discussions are needed, if they occur with the right people involved. This
theme aligns to a National Recommendation.
3. It was clear that hospital passports are used when provided to wards however these were not
always provided on admission and/ or were not updated. Individuals in Northamptonshire have
access to two acute hospitals that both have a different version of the hospital passport. This has
been identified by the Acute Strategic Health Facilitators based in the acute Trusts and an action
to take forward and discussions have already commenced. In addition, the newly introduced Easy
Read Advance Care Plan should continue to improve outcomes for patients.
4. Both health and social care monitor that individuals have a hospital passport at point of referral
however there may be gaps in the documents being updated and presented at the hospital for use.
The Strategic Health Facilitators periodically attend provider forums to reinforce this message as
well as our experts by experience in both acutes reminding staff, patients and their families of the
importance and usefulness of these documents.
5. There is a continued need for consistency of monitoring protected characteristics to inform where
our prevention and early intervention strategies can best improve outcomes for patients.
4.2 Good practice examples from completed reviews
1. The Strategic Health Facilitator based in the acute hospital settings have been pivotal roles to
enabling the reasonable adjustments made within service and this has led to positive outcomes for
patients, carers, families and fellow staff. These staff are supported by Experts by Experience,
employed to ensure there are multiple perspectives on quality with patients and their families
reporting their improved confidence in the care received.
2. Health passports are in place for a significant number of people and shared appropriately,
supporting the patient in attending all health appointments.
3. Examples of excellent multi-agency working with the individual and/ or family to enable
timely decisions and access to healthcare.
4. Evidence of professional support and engagement with the individual and their family, in
order to respond to the individuals needs and decisions in relation to end of life care.
4.3 Outcomes & Impact
The Action Plan below sets out the local initiatives and expected impact in relation to the NHSE/I original
23
Action from Learning plan detailed in their 2019 report.
LeDeR Recommendation Detail of related local
initiatives in 2019
How will this impact on
the delivery of health
and/ or care for people
with a learning
disability into 2021
Strengthen collaboration and information sharing, effective communication, between different care providers or agencies.
The collaboration, communication and information sharing is promoted by the established LeDeR
Steering group with strong
representation from the
health and care sector,
which meets regularly to
discuss any action, learning
and recommendations from
the completed LeDeR
reviews in order to drive
service improvements
across the whole system.
In addition to the LeDeR
Steering Group, the input of
the Learning Disabilities
and Autism Steering Board
and the constituent Action
Groups, as well as work
with Quality Checkers
(experts by experience) and
advisory panels are all in
place to continue to develop
our understanding, quality
and improvement to
outcomes for people.
At strategic level, the Steering Group will continue to take accountability for strengthening communication and partnership working, especially around areas that the LeDeR reviews have identified as concerns. This assists us in developing the core competencies of the workforce, the training needs and development as well as commissioning intentions to provide a more person centred, early intervention focused model of care.
Push forward the electronic integration of health and social care records to ensure that agencies can communicate effectively, and share relevant
information in a timely
way.
There are strategic IT discussions locally to develop a shared portal across care agencies Both health and social care staff have been involved to help shape local requirements. The County Council are disaggregating into two unitary local authories in 2021, and the modelling taking place affords the partnership the opportunity to build a shared approach into their target operating
The portal will link data between healthcare records and improve patient care. Ensure patient centred care for early identification and prevention to deliver better quality interventions and improve outcomes for patients. The Advisory Panel and Champions are working with senior
24
models. leaders to ensure the pathways are clear on our local web directory of services – MiDOS. This was made available to Primary Care services in early 2020 with a further role out to professionals and the public in 2020/21
Health Action Plans, developed as part of the Learning Disabilities Annual Health Check should be shared with relevant health and social care agencies involved in supporting the person.
Locally there are integrated working processes to encourage review and increased access of quality annual health checks for people with learning disabilities. Regular training and communications across providers, families and primary care maintains the importance of Annual Health Checks and active Health Action Plans. Both social care and health quality monitoring and review include checking Annual Health Checks and Health Action Plans. 2019 included a health and social care summer roadshow coproduced with our local Get On Board social enterprise, designed to engage with service users and their carers. Also Mencap events supported this approach. For children and young people the annual health checks will form part of the education, health and social care plans (EHCP), in line with SEND requirements.
The number of LD AHC's offered in primary care to people with learning disabilities needs to increase. The AHC is a proactive health check designed to produce meaningful person centred Health Action Plans that identify and investigate symptoms of ill health at the earliest opportunity. Early investigation can lead to timely treatment therefore reducing preventable and premature deaths. Quality checks by health and social care will improve the quality of Health Action Plans. Quality health checks and action plans will have a positive outcome to people’s health and well-being. . The Quality Checker services also looks at whether the appropriate support and care is being given.
Providers should clearly identify people requiring the provision of reasonable adjustments and demonstrate an assessment and plan has
There are local assessments developed within the acute settings that will report into the mortality group. Local services have the ability
There are local initiatives developed and the local LD/ASD Delivery Group are responsible to identify areas that struggle with making reasonable adjustment
25
been carried out and good quality records to identify this is the case. record the reasonable adjustments that are required and regularly audit their provision.
and awareness to record when reasonable adjustments are made and/ or required. Both Strategic Health Facilitators and the local health community teams support providers to consider and apply reasonable adjustments to enable access to health. A programme has been developed by health and social care to work with the counties Quality Checkers to audit reasonable adjustments across all local health facilities. Quality Checkers is a service where people with learning disabilities and lived experience check the quality of local services Reasonable adjustment reports and Learning from LeDeR reviews specific to reasonable adjustments will be shared with the Steering Group to drive service improvement across the whole sector. Reasonable Adjustments continue to be a focus of the Action Groups reporting to the Learning Disabilities and Autism Board. The Autism Advisory Panel and Champions group are leading in this area as a core programme continuing into 2020/2021.
support can be offered to improve access and develop the plans to improve our partnership approach to support and deliver our Learning Disability community If all services are improving access to healthcare through reasonable adjustments this will increase the early detection of illness and opportunity for treatment and intervention reducing the likelihood of unavoidable deaths.
Mandatory Learning
Disability awareness training should be provided
to all staff, delivered in conjunction with people with
learning disabilities and their families.
The NHS Long Term Plan
sets out that over the next five years, national learning
disability improvement standards will be
implemented and will apply to all services funded by the
If and when there are any
proposed changes to national standards, this will
be reviewed within the context of the National
Workforce Standards (e.g. new BASW standards, NHS
26
NHS. This forms part the local LD and MH commissioner intentions
and will be monitored via service contracts.
training development) will promote greater consistency in skills,
knowledge and awareness for the care workforce as
well as increase the use of reasonable adjustments.
People and their families will report they are better
supported. The training programme will
give employment opportunities for people with
learning disabilities and/ or their families.
There should be a national focus on pneumonia and sepsis in people with learning disabilities to raise awareness about the prevention, identification and early treatment.
There have been market days and workshops across the county delivering sessions on Aspiration pneumonia, constipation and sepsis through the year. Easy read information has been given to providers and carers. Provider forums have also had sessions delivered on the most common causes of death. The local Acute care settings have implemented a sepsis pathway and tool kit in 2019. The peaks of notifications are in line with the flu season cycles. There are reasonable adjustments in place to support PWLD who are needle phobic can have a nasal spray at any age. Easy read information is available to display in each surgery. Reminders are sent to health and social care LD providers regarding their
By continuously reminding people about pneumonia and sepsis and handing out information there will be better awareness and identification of the signs that someone is deteriorating. Early medical attention will improve healthcare delivery and outcomes. We will analyse how our prevalence of pneumonia and sepsis performs against regional and national bench marks. The Annual seasonal flu plan has capacity to develop further with the evidence of the seasonal spikes and respiratory issues accounting for 38 % of LD deaths, the LeDeR Board will make recommendations to the Primary Care planning leads highlighting the significance.
27
residents and there staff being eligible for flu jabs and reasonable adjustments that could be made to increase uptake, with the Provider Forum being a key communication channel. Our Primary health facilitators are involved in informing the local campaign.
Local services strengthen their governance in relation to adherence to the Mental Capacity Act (MCA) and provide training and audit of compliance “on the ground” so that professionals fully appreciate the requirements of the Act in relation to their own role.
The CCG seeks assurance in line with the NHS schedule 6 Contract Service Condition for tier 1, 2 & 3 providers, that the provider has relevant policies for MCA and Deprivation of Liberty Safeguarding (DoLS), that staff have received training and audits are completed to support compliance with this legislation. The acute Strategic Health support the delivery of MCA training in the acute hospitals and all Strategic Health Facilitators working across acute and primary care work in partnership with local community health services to support local services to implement MCA requirements.
There is greater involvement in decision making within the healthcare setting and as a consequence improvement of the delivery of the healthcare for people with learning disability.
28
A strategic approach is required nationally for the training of those conducting mortality reviews or investigations, with a core module about the principles of undertaking reviews or investigations, and additional tailored modules for the different mortality review or investigation methodologies.
E-learning training has been implemented. New reviewers have a buddy to support them through the first review. The steering group will ensure that there is local representation at national tailored modules/conferences. The LAC attends the regional LAC meeting to share learning and themes from completed reviews and gain an understanding of what is happening across the midlands region. This is disseminated to the local steering group and shared with local reviewers.
Completion of training and attendance at forums where best practice is discussed will give good quality LeDeR reviews resulting in learning that improves the experience of healthcare for people and their families.
29
Chapter 5 Objectives and Plans
for 2020 - 2021
30
The NHS Operational Planning and Contracting Guidance 2019/20 (10yr plan) includes 4 deliverables
in relation to the LeDeR programme: Northamptonshire CCG aligns its actions to enable delivery
1. CCGs are to be a member of Learning from Deaths report (LeDeR) steering group and have a
named person with lead responsibility. Northamptonshire Action: - Chief Nurse and Quality
Officer is accountable for the LeDeR programme and strategic oversight of delivery. The group is
chaired by the Deputy Director of People, Personalisation and Integration. The LAC is engaged
with regional LACs and NHSE regional leads.
2. There is a robust CCG plan in place to ensure that LeDeR reviews are undertaken within 6 months
of notification of death to local area. Northamptonshire Action: - The CCG tracks all new
notifications, reviews that are under investigation and reviews that are in progress to ensure this
expectation is achieved. The CCG monitors performance with the aim to ensure notifications are
allocated within 3 months and reviews are complete within 6 months.
3. CCGs have systems in place to analyse and address the themes and recommendations from
completed LeDeR reviews. Northamptonshire Action: - The CCG contributes learning from
reviews to the local Steering Group where themes are collated, incorporated within the local action
plan where priorities are set for health care and service improvement. Representatives from
services within the Steering Group are tasked to cascade the learning throughout their services.
4. An annual report is submitted to the appropriate board/committee for all statutory partners,
demonstrating action taken and outcomes from LeDeR reviews. Northamptonshire Action: - A
number of reports have already been provided through internal governance arrangements. A
LeDeR update was incorporated within the CCG Annual Report. This report is the first annual
report provided by the CCG which will be shared across partner agencies through the local the
relevant boards and committee. There will continue to be yearly reports produced by the LAC.
In addition to the actions above Northamptonshire Steering Group have agreed the following local
priorities:
5. The Steering group to explore the demographics of the data available from health and social care
to inform the action plan, including looking at age, ethnicity and other protected characteristic
areas.
6. To review audits carried out across health services and explore the bias and gaps agreeing
recommendations for action, including any outreach taking place to even harder to reach groups.
7. To seek data as to the number of staff receiving mandatory training and ensure the training
includes information on the top causes of death.
8. The local Northamptonshire LeDeR Steering group is committed to strengthen links with the local
Child Death Overview Panel (CDOP) to enable shared learning across the county in relation to
Children’s Services, Generic Health services and Specialist Learning Disability Services. The
CDOP 2020 5 year review and audit will further Northamptonshire’s understanding and actions in
relation to children and young people’s premature mortality issues and enhance our strategic
planning for 2021 and beyond.
9. Continue to strengthen partnership working with Public Health, Providers and other stakeholder
groups to continue to improve local understanding of the determinants of premature deaths and
improve effective prevention and early intervention strategies and practices.
31
Chapter 6 Conclusion
32
1. Northamptonshire CCG with key stakeholders of the steering group continues to be committed to
delivering the LeDeR programme, monitoring quality of services and meeting the nationally agreed
targets. The dedicated support from the LAC and the continued support from the local LD Strategic
Health Facilitators are essential to continue improvement.
2. Coproduction and community engagement is essential to ensure the prevention and early intervention
principles are embedded in everything we do. This was exemplified in the Longer Life Roadshows and
the implementation of the Easy Read Advance Care Plan.
3. The recommendations and areas of learning from the completed reviews mirror those set out in the
Annual National LeDeR report. In Northamptonshire the care delivered and recorded in the completed
reviews has improved. The year ahead will focus on improving partnership working to promote more
coordinated care for individuals and contribute to service improvement and delivery. We have
recognised that the COVID 19 pandemic has highlighted some significant challenges for both our
population with learning disabilities and their carers. The LeDeR Steering group will take the opportunity
in 2020 to review the learning from the whole system restoration and recovery, with a focus to improve
care quality outcomes.
4. There will be a significant push to deliver the Northamptonshire LeDeR Steering Group Strategic Action
Plan. This plan details the projects and plans to improve services and educate our key stakeholders and
providers on areas highlighted as the main causes of death for people with learning disabilities.
5. A governance and quality reporting mechanism has been embedded to ensure the recommendations
from completed reviews are shared across the system to improve service delivery and highlight good
practice. The next phase will be to share this through training, incorporating prevention and detection of
health needs.
6. 15 of the notifications of death before January 2019 that were not completed were allocated to the
backlog project. This is robustly managed and quality assured with the allocated reviewers. This has
meant that Northamptonshire will be able to deliver targeted action for improving service delivery whilst
meeting the national targets for allocating and completing reviews.
7. The cause of death in a number of cases can largely be preventable with early intervention and while
78% of the cases reviewed had a positive quality of care, there is still work to do to improve our
outcomes for people.
33
Appendices
34
Appendix 1: Longer Lives for Learning Disabilities Roadshows – February 2019 .......................................... 35
Appendix 2: Easy Read Advance Care Plan .................................................................................................. 37
Appendix 3: Demographic Data ..................................................................................................................... 38
Figure 8: Approximate number of adults with a disability in each borough/district from the Northamptonshire Joint Strategic Needs Assessment: ............................................................................................................... 38
Figure 9: National POPPI and PANSI Data June 2020 .................................................................................. 38
Appendix 4: Terms of Reference for the LeDeR Mortality Steering Group (September 2019) ........................ 39
Appendix 5: Action Plan as at March 2020 .................................................................................................... 42
Appendix 6: Northamptonshire LeDeR Process Map ..................................................................................... 46
Appendix 7: Northamptonshire Learning Disabilities and Autism Governance Map ....................................... 47
Appendix 8: Links to Resources and Further Reading ................................................................................... 48
Appendix 9: Glossary ..................................................................................................................................... 49
Appendix 10: For more information about LeDeR .......................................................................................... 50
Contents
35
Appendix 1: Longer Lives for Learning Disabilities Roadshows – February 2019
36
37
Appendix 2: Easy Read Advance Care Plan After a successful bid to the Innovation Fund, Nene and Corby CCG approached the Northamptonshire Healthcare Foundation NHS Trust (NHFT), End of Life Care Practice Development Team to lead the ‘Accessible Advance Care Planning (ACP) Development & Education Pilot Project.’ NHFT End of Life Care Practice Development Team accepted responsibility for leading the project, formed a project steering group and collectively developed the objectives below: Project objectives:
Form an active project steering group, with appropriate representative membership
Investigate nationally if there are already accessible ACP booklets
Develop and produce an accessible ACP booklet
Develop and actuate a communication/dissemination plan
Advise on the design and delivery of 2 ACP train the trainer champions study days – with LD teams supporting facilitation
Advise on the development and production of resources to support the ACP study days
Evaluate the pilot project
Seek further funding to disseminate the project across the county to enable sustainability
The booklet was developed over several months with feedback sourced from service users, NHS peers, Mencap and Compassion in Dying. 7000 copies of the final booklet were produced ready for circulation around the county, with an electronic version also available. It was decided that a supporting leaflet would be useful as there is one to support the standard ACP booklet which has proven beneficial. Again, this was initially created by the Learning Disability teams and the project lead, with feedback being obtained and leaflet changed to reflect the suggestions. The teaching presentation was created with Train the Trainer Resource Packs provided for each learner, to enable the sharing of learning of learning. Resources within the packs included:
Master copies of Easy Read Advance Care Planning leaflet and booklet
Information on how to obtain further copies
Key slides from the training that can be used to train others
Advance care planning conversation starters
10 tips for communication with people with learning disabilities
Advance care planning quiz
Resource and reference list In total 23 learners attended the ACP Train the Trainer Champions workshops from 9 organisations. Evaluations were very positive, with many attendees stating they would transfer the learning into their practice. Group discussion at the end of each workshop highlighted that the communication skills section of the day would have been enhanced by people with learning disabilities (PWLD) attending and contributing to the session. It was also felt that a film, demonstrating a PWLD having a conversation with a professional or carer about ACP would be extremely valuable. Learners felt this would demonstrate the suggested communication skills in practice and help in the transference of skills into practice. To access the toolkit, visit the web address below: https://www.cynthiaspencer.org.uk/assets/Uploads/Electronic-copy-Easy-Read-ACP-v9.pdf
38
Appendix 3: Demographic Data
Figure 8: Approximate number of adults with a disability in each borough/district from the Northamptonshire Joint Strategic Needs Assessment:
Borough/district Approximate number of adults with a disability
Corby 10,350
Daventry 13,500
East Northamptonshire 14,950
Kettering 16,000
Northampton 33,000
South Northamptonshire 14,800
Wellingborough 13,250
89% of the above are those with physical disabilities (PD), the remaining 11% have learning disabilities, with the exceptions of Northampton (88% PD) and Wellingborough (90% PD),
Figure 9: National POPPI and PANSI Data June 2020 2019 2020 2025 2030 2035
People aged 18-24 predicted to have a learning disability
1,448 1,426 1,441 1,638 1,673
People aged 25-34 predicted to have a learning disability
2,266 2,261 2,189 2,082 2,176
People aged 35-44 predicted to have a learning disability
2,388 2,409 2,518 2,518 2,447
People aged 45-54 predicted to have a learning disability
2,557 2,527 2,411 2,440 2,559
People aged 55-64 predicted to have a learning disability
2,126 2,195 2,430 2,429 2,322
People aged 65-74 predicted to have a learning disability
1,703 1,717 1,718 1,964 2,184
People aged 75-84 predicted to have a learning disability
864 908 1,186 1,298 1,347
People aged 85 and over predicted to have a learning disability
321 327 391 501 685
Total population aged 18 and over predicted to have a learning disability
13,673 13,770 14,285 14,870 15,393
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Appendix 4: Terms of Reference for the LeDeR Mortality Steering Group (September 2019)
Steering Group Terms of Reference (ToR)
Northamptonshire Learning Disability Mortality Review (LeDeR) Steering Group
Background The Learning Disabilities Mortality Review (LeDeR) Programme, delivered by the University of Bristol, is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England. The aim of the programme is to drive improvement in the quality of health and social care service delivery for people with learning disabilities and to help reduce premature mortality and health inequalities in this population, through mortality case review. These reviews are intended to support health and social care professionals, and policy makers to clarify the contribution of various causes of death to the overall burden of excess premature mortality for people with learning disabilities; identify variation and best practice; and identify key recommendations for improvement. The programme will complement and contribute to the work of other agencies such as the Learning Disability Public Health Observatory, academic research studies, NICE, the CQC inspection programme, Local Government Associations, The Transforming Care Programme, and Third sector and voluntary agencies.
The scope of the local reviews of deaths
The LeDeR Programme will support reviews of deaths of people with learning disabilities aged 4 years and over;
The Programme will support reviews of all deaths, irrespective of the cause of death or place of death; and
The following reviews will take precedence over local reviews: Serious Case Reviews (SCRs), Safeguarding Adult Reviews (SARs), Safeguarding Adults Enquiries (Section 42 Care Act) Domestic Homicide Reviews (DHRs), Serious Incident Reviews, Coroners’ investigations, Child Death Reviews and MBRRACE.
Purpose and role of the group
Oversee the progress of the overall programme, its delivery and ensure learning is actioned and
embedded within stakeholder agencies;
To support and provide guidance on the direction of the programme and its success;
Providing a forum for discussion and support for the proportionate review of all deaths of people
with learning disabilities in Northamptonshire and those which are classed as priority themed
reviews;
To review and comment on the regular updates received from the Local Area Contact of the
progress and findings of reviews and delivery of the overall programme;
To help interpret, analyse and critique the data and information submitted from local reviews,
including areas of good practice in preventing premature mortality, and areas where improvements
in practice could be made;
To identify and agree priorities for Northamptonshire’s LeDeR action plan as a result of the reviews
of deaths and steer the programme of appropriate actions as a result of such information;
To oversee and monitor the action plan developed;
40
To help guide the development of recommendations and provide advice on issues that affect
service users;
To review anonymised case reports pertaining to deaths or significant adverse events relating to
people with learning disabilities for publication in the LeDeR programme repository in order to
contribute to collective understanding and guiding of learning points and recommendations across
cases; and
To work with NHS England to implement National directives.
Ways of working
The Group will meet a minimum of four times a year;
Members of the Group will receive papers one week before each meeting;
Minutes of the meeting will be kept by the Local Area Contact and agreed by all members of the
Group who attended the meeting;
Members may be contacted between meetings for advice should the need arise;
From time to time sub-groups may be formed to work on specific issues as appropriate; and
From time to time individuals may be co-opted to provide specific advice and expertise as required.
Membership The Steering Group should include the following representation:
Chair - Deputy Director of Partnerships, Integration & People, CCG;
Deputy Chair - CCG GP Executive Lead;
Local Area Contact (LAC);
Assistant Director – Specialist and Complex Working Age Adult Services;
LD Commissioners - Clinical Commissioning Groups;
LD Commissioners – Local Authority;
Strategic Health Facilitator – Primary Care;
Strategic Health Facilitator – NGH;
Strategic Health Facilitator - KGH;
Mortality Governance Lead - NGH;
Deputy Medical Director and Mortality Lead – KGH;
Mortality Manager – KGH
Service Manager - Children First Northamptonshire
Quality Assurance Manager - Public Health;
Head of Nursing & Safeguarding – Clinical Commissioning Group;
Patient Safety and Mortality Practitioner - Northamptonshire Healthcare NHS Foundation Trust
(NHFT).
Governance
This Steering Group will report to the LD Transformation Assurance Board;
Reporting progress at LA safeguarding boards; and
If there are lessons to be learnt and change to be embedded, members will ensure this is communicated to their retrospective organisation.
41
Meeting frequency
Meetings to be held quarterly;
Meetings arranged and coordinated by the Local Area Contact; and
Among other matters, the meetings may establish time specific working groups to focus on specific issues, which may be delegated to resolve / approve specific actions.
Timelines ToR to be reviewed, agreed and signed off every 6 months or sooner if deemed necessary.
42
Appendix 5: Action Plan as at March 2020
Action number
Action Key Milestones Milestone due date
Owner Measurement
strategy Progress update
RAG Rating
on progress
(red, amber, green,
complete, Not Yet Started)
1.01 Comprehensive Comms Plan
Updated Comms Plan that is live and in line with stakeholder feedback
31/03/2020 BR The plan is embedded into each partner's comms plan
The plan will be revised and updated following stakeholder feedback
1.02 Robust process of incorporating learning and recommendations from reviews and embed this as BAU
Develop a robust process and share key findings with relevant individuals/organisations to verify the recommendations and actions to learn
01/04/2020 BR Process is implemented and shared amongst partners. Themes and recommendations are shared and incorporated into relevant actions.
The plan needs to be consulted on and tested
1.03 Use local LD data incl. service user data to understand the
Gather and analyse health and social care data mapped against the national
01/04/2020 PH/NHFT/ NASS Local LD population against demographics is shared and understood
Information gathered - to be analysed
43
proportionality of deaths by the key demographic groups
average
1.04 Ensure all organisations embed LeDeR into relevant plans and strategies
Information and assurance is shared by all key stakeholders to the steering group
21/04/2020 All Collation of a list of policies, strategies and plans where LeDeR has been included
To be developed following ongoing assurance from the group
2.01 Raise and discuss with clinicians instances of unconscious bias they or families identify
Staff trained on MCA. Themes are discussed and shared with the steering group
30/09/2020 NGH/KGH/NHFT/NASS
Training and Development Plan to be developed and consulted on
To be developed as part of the T&D plan
2.02 Mandatory LD awareness training to be provided to all staff
Data and assurance to be monitored and reported back
30/09/2020 NGH/KGH/ NHFT Training data is gathered and reported
Gaps to be identified by all stakeholders
2.03 Increase awareness and understanding of the top causes of death incl. TNA of gaps of knowledge
Awareness training is rolled out to NHS and non-NHS care staff
30/09/2020 NGH/KGH/ NHFT/NASS
Menu of options/training/awareness schedule developed incl. training material
Training is carried out but not recorded in a central place. This will be gathered and incorporated into the plan
44
3.01 Understand the gaps in areas where reasonable adjustments need to be considered e.g. MH services, acute depts, etc.
Collate information from all stakeholders
01/04/2020 NGH/KGH Record of information collated and tracked
This is being done by depts. but the scale is not known. To be documented and updated at the next steering group
3.02 Quality Checkers to ensure that reasonable adjustments are made where possible
Understanding their remit and how that is reported back
31/03/2020 DLH Information of reasonable adjustments made by care providers
To be explored further of how this could be reported back
3.03 LD/ASD Flagging System
To be rolled out in line with national timescales
31/12/2020 NHFT/NGH/ KGH National strategy is embedded into online reporting systems
National scheme and timescales to be confirmed
4.01 HAPs are developed and shared as part of the AHCs
Awareness amongst carers and professionals
31/03/2020 NASS/NHFT Rise in the number of HAPs
To commence
4.02 Ensure Hospital Passport is up to date and relevant
Awareness amongst all care staff
31/03/2020 All Increase in the number of Hospital Passports and it's usage
Key headlines and purpose shared with NASS staff
45
4.03 Results from Audits on MCA to be shared with the group and any outcomes
Information gathered and monitored
31/03/2020 NGH/KGH Application of MCAs is recorded
Information is gathered. To be reported back to the steering group
4.04 Evaluate the usage and application of baseline health reading tools to prevent early deterioration
Information gathered and gaps identified and reported back to the group
31/03/2020 NHFT/NASS A suite of tools gathered as best practice - training will follow
To commence
46
Appendix 6: Northamptonshire LeDeR Process Map
47
Appendix 7: Northamptonshire Learning Disabilities and Autism Governance Map
48
Appendix 8: Links to Resources and Further Reading https://www.england.nhs.uk/publication/leder-action-from-learning-report/ (Action for Learning Report 2019/2020 is the 4th national review of the LeDeR programme) https://www.england.nhs.uk/wp-content/uploads/2020/07/Action-from-Learning-Helpful-Resources-FINAL.pdf (LeDeR has a very helpful like to various resources as a part of their Action from Learning Helpful Resources Document)
https://www.england.nhs.uk/learning-disabilities/improving-health/annual-health-checks/ (Guidance, advice and support materials for annual health checks for people with learning disabilities) https://www.gov.uk/government/publications/learning-disability-applying-all-our-health (Evidence and guidance to help healthcare professionals to improve the health and wellbeing of people with learning disabilities.) https://www.nice.org.uk/guidance/qs187 (Guidance on looking after people with learning disabilities as they grow older) https://www.england.nhs.uk/publication/improving-identification-of-people-with-a-learning-disability-guidance-for-general-practice/ (NHS England has published some guidance on how to improve the identification of people with a learning disability in order to improve the health and wellbeing outcomes.) http://www.northamptonshireccg.nhs.uk/ourwork/learning-disability-commissioning.htm (LeDeR NHS Northamptonshire CCG Page) https://www.northamptonshire.gov.uk/councilservices/adult-social-care/disability/Pages/learning-disability-brain-injury.aspx (Northamptonshire County Council Learning Disability Services) https://www.nhft.nhs.uk/learning-disabilities (Northamptonshire Healthcare Foundation Trust Community Team for People with Learning Disabilities. www.bristol.ac.uk/sps/leder/ (LeDeR Programme website) www.gov.uk/government/collections/reasonable-adjustments-for-people-with-a-learning-disability (Guides on how reasonable adjustments should be made to health services and adjustments to help people with learning disabilities to access services.) https://www.btm.org.uk/wp-content/uploads/2018/05/Understanding-Constipation-high-res.pdf (Easy read guide to understanding constipation) http://www.bristol.ac.uk/cipold/reports/ (CIPOLD Report (2013)
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Appendix 9: Glossary
Abbreviation Full Name
CCG Clinical Commissioning Group
CDOP Child Death Overview Panel
CTPLD Community Team for People with Learning Disabilities
DOLS Deprivation of Liberty Safeguards
LeDeR Learning Disability Mortality Review Programme
LD Learning Disability
LAC Local Area Contact
NASS Northamptonshire Adult Social Services
NCC Northamptonshire County Council
NCCG NHS Northamptonshire Clinical Commissioning Group
NHFT Northamptonshire Health Foundation Trust
NHSE NHS England
NHSI NHS Improvement
PWLD People with Learning Disabilities
QOF Quality Outcomes Framework
SEND Special Educational Needs & Disability
STAMP Supporting Treatment and Appropriate Medication in Paediatrics
STOMP Stop the over medication of people with a learning disability, autism or both with
psychotropic medicines
TCP Transforming Care Programme
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Appendix 10: For more information about LeDeR Northamptonshire LeDeR Programme Sue Freeman Senior Commissioning Manager Learning Disabilities/ LeDeR Lead, NHS Northamptonshire Clinical Commissioning Group Francis Crick House Summerhouse Road Northampton NN3 6BF The LeDeR e-learning course link to become a trained reviewer: www.lederlearning.co.uk
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