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 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

2 A difference nationally 8 Sepsis and the deteriorating patient work stream 9 Constipation 11 Dysphagia 11 Cancer 12 Mental Health Capacity Act 12 Valuing the input of bereaved families 13 Communicating our work 13 Establishing an online network 14 Conclusion 14 Summary and next steps 14

3 ANNEX 1: 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 30 Service improvements for family carers and paid carers 32 Other service improvements 33page 4 Action from learningForeword from a

4 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. 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 .

5 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. 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. 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.

6 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, 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, 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 .

7 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. I am very pleased to be the expert by experience lead, working on NHS England and NHS Improvement s Learning into action work as part of the LeDeR to and working with people with a Learning Disability and our families will help make sure that services meet our needs. This should help to make sure that me and my friends have the chance to live long and healthy lives like everyone OxfordLearning Disability Network Manager,NHS England and NHS ImprovementForeword from NHS England and NHS ImprovementThe Learning Disability Mortality Review (LeDeR) Programme was commissioned to improve the standard and quality of care for people with a Learning Disability .

8 The third annual report, published in May 2019, provides a welcome update on the Learning emerging from this vital work. This NHS England and NHS Improvement report will outline some of the extensive activity that is taking place locally and nationally in response to the Learning from LeDeR reviews. It is of great concern that the latest LeDeR report cites deaths reviewed where there were concerns about the quality of care, and an average age of death that is 23 years younger than the general population for men with a Learning Disability and 27 years younger for women. The LeDeR Programme provides a framework for making sure that local service improvements are being made in response to Learning from deaths. It is heartening to hear that many LeDeR reviews describe people living good lives with high quality, person-centred care and support, being treated with love and respect, their life and contributions valued by people around them.

9 Many reviews describe a thoughtful approach to end of life care, with the needs and wishes of the person and their family at the heart of lifelong healthcare and timely treatment all make a difference in keeping people healthy and, once people are nearing the end of life, bucket lists, involvement in funeral planning, preparing housemates and fitting goodbyes have all stood out in LeDeR reviews as supporting people to have the type of death we may all aspire often the input of a few people who show compassion, take responsibility, demonstrate page 6 Action from learningleadership and don t accept anything less than they might expect for themselves is what underpins high quality care. Learning from these situations must inform service improvements so that this becomes the standard for people with a Learning Disability .

10 The NHS Long Term Plan makes a commitment to reducing the premature Mortality of people with a Learning Disability . As part of this, NHS England and NHS Improvement will provide funding to Clinical Commissiong Groups (CCGs) to support them to complete their outstanding reviews. There will also be investment to secure the long-term future of the LeDeR Programme so that the wealth of Learning it provides continues to be translated into action. There must be universal recognition amongst all health and social care staff of the need to prioritise improvements in the quality of services, so that people with a Learning Disability are supported to live longer, healthier year s report is based on findings from over 1,000 reviews; a further 650 reviews have since been completed. This may well be the most significant amount of evidence ever compiled about the deaths of people with a Learning Disability at an individual level.