Learning Disability Mortality Review (LeDeR) Programme ...

1 Learning Disability Mortality Review (LeDeR) Programme : Action from LearningNHS England and NHS ImprovementPublishing Approval Reference: 000373 This document is available as an easy-read and can be provided in alternative formats upon document uses images from Photosymbols . May 2019 Action from learningpage 3 Action from learningContentsForeword from a bereaved relative 4 Forword from a person with a Learning Disability 5 Foreword from NHS England and NHS Improvement 5 Introduction 7 NHS England s and

2 NHS Improvement s response to the LeDeR annual report 2018 7 NHS England s and NHS Improvement s action plan 8 Making a difference locally 8 Making a difference nationally 8 Sepsis and the deteriorating patient work stream 9 Constipation 11 Dysphagia 11 Cancer 12 Mental Health Capacity Act

3 12 Valuing the input of bereaved families 13 Communicating our work 13 Establishing an online network 14 Conclusion 14 Summary and next steps 14 ANNEX 1.

4 NHS England and NHS Improvement actions from the Government s response to the second annual LeDeR report 16 ANNEX 2: LeDeR planning guidance deliverables for CCGs 20 ANNEX 3: NHS England and NHS Improvement LeDeR Action Plan 2019/2020 21 ANNEX 4: Local service improvement examples 28 Service improvements in acute hospitals 28 Service improvements in community Learning Disability teams 29 Service improvements in primary care

5 30 Service improvements for family carers and paid carers 32 Other service improvements 33page 4 Action from learningForeword from a bereaved relativeWhen my happy, healthy and much-loved brother Richard died suddenly and unexpectedly in 2012 of constipation, I was devastated. Not only had I lost my wonderful and mischievous big brother, my eyes had been opened to the extent of inequalities faced by people with a Learning was 33 when he died and his death raised serious alarm bells for me and my family.

6 It was clear that improvements were needed across health and social care services, to make sure that no other people with a Learning Disability could die of such a preventable and treatable condition. We were left feeling very worried about other people with a Learning Disability , especially people without families to speak up for them. We were amazed by how hard we as a family, and many others, had to fight to make sure that services learnt from the deaths of people with a Learning Disability . When Richard died, I could only dream of a time when Mortality reviews would be routine for all deaths and family involvement would be viewed as paramount.

7 Our experiences left me unable to imagine this happening in my lifetime and yet the LeDeR Programme has introduced clear expectations on health and social care services and public bodies when anyone with a Learning Disability dies. I still miss Richard terribly but am heartened to see how far things have come since he died. Indeed, the LeDeR Programme requires that all deaths are reviewed, that families are involved throughout reviews and that service improvements are made to improve care for other people. There is undoubtedly still a long way to go.

8 Every single untimely death is absolutely a death too many. I am hopeful though that the tide is turning and that the changes that so many of us passionately fight for, will be realised in my lifetime. I have had the privilege of meeting many other bereaved families, people with a Learning Disability , their families, carers, and professionals who share a commitment to making sure that health inequalities are addressed and that premature Mortality is no longer seen as an like mine, who live with the pain and loss of our missing loved ones every day, will not be reassured until more action has been taken.

9 More improvements have been made and people with a Learning Disability and their families routinely report more positive experiences of health and social and people with a Learning Disability will, quite rightly, remain concerned until the backlog of unreviewed deaths is addressed and LeDeR reviews are routinely completed in a timely way. We also need reassurance that the requirements introduced by LeDeR to meaningfully involve bereaved families throughout reviews are consistently England and NHS Improvement are committed to making sure that more Mortality reviews are carried out and that the concerns of bereaved families, people with a Learning Disability , their families and carers, and indeed many professionals, are and EmilyDr Emily Handley-Cole is a Learning disabilities clinical psychologist.

10 Currently employed by NHS England and NHS Improvement as a national premature Mortality governance and development lead for the LeDeR 5 Action from learningForeword from a person with a Learning disabilityI would like to say thank you to everyone who has been involved in the LeDeR Programme . This is very important work which should save the lives of people with a Learning report tells us about the action from Learning work across England. It tells us about changes happening to make services better in different parts of the country and changes that will make services better across the is not fair that people with a Learning Disability die younger than other people.