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Reflections on the Learning Disability Premature Mortality Review Programme (LeDeR)

The recent publication of the Learning from Deaths report (LeDeR) from Bristol University has understandably prompted significant interest and debate. The evidence of sustained and profound health inequalities for people with a learning disability, autism or both is devastatingly compelling and we recognise without question that across public service we must do better. I hope in sharing these thoughts to encourage focus on the action that needs to be taken in response to the gravity of the report’s findings to make a difference with, and for people with a learning disability, autism, or both and their families.

I will now personally have oversight of this work going forward and will be working with the University of Bristol to begin planning for future reports. In doing so my primary motive is to ensure we concentrate on taking action from this important Independent Review that makes a difference.

What we know is that too many people with learning disabilities die prematurely all too often for preventable reasons. NHS England has made this a priority and the first ever mortality review process affords us the opportunity to learn quickly and in addition to any national changes to urge every local area to put new measures in place in hospitals, GP practices and other health services to effectively address this.

I don’t think anyone doubts that this is well intended, thoughtful work; but ultimately everyone will rightly judge it by the difference it makes. Therefore my thoughts turn to how we can ensure that it is as impactful as it needs to be. I think three things are crucial: the quality and timeliness of reviews, where the findings go for decisions and the effectiveness of the actions taken.

Quality and timeliness of reviews

Whilst some will argue that the LeDeR process is in the relatively early stages of implementation, the process now needs to pick up pace, with more reviews being completed in the last six months than the preceding two years. We are putting an extra £1.4m additional funding to address the current backlog in local areas. But there simply has to be greater rigour from every CCG, local authority and NHS Trust in ensuring reviews are completed. The importance has been reinforced with the expectation included in NHS England’s Refreshing NHS Plans for 2018/19. As always when greater pace is needed we should be watchful to ensure it is not at the expense of quality.

Where the findings go:

The LeDeR process needs to lead to change at both a local and national level. How that is best achieved locally might include: reports in public to CCG and NHS Trust Boards, discussion at Safeguarding Adults Boards, annual reports to Health and Wellbeing Boards with invites to local learning disability organisations and representatives. Ultimately local leaders need to take responsibility for ensuring effective actions are taken.

NHS bodies nationally, need to be clear about the governance arrangements for receiving, considering and responding to the Independent Annual Report and ensure that process is published, transparent and understood. They should also set out their actions in response and report openly on progress against them.

The effectiveness of the actions taken

We should be open to ongoing independent assessment of how much difference is being made with, and for, people with a learning disability, autism or both, their families and carers. The LeDeR report doesn’t make comfortable reading for anyone, too many families lack confidence in what is being done locally and nationally, we must seek to change that, their unparalleled insight should be the acid test of whether we are doing enough.

My colleague John Trevains has set out some greater detail in a blog to be published shortly about learning that has led to action already, including around sepsis, dysphagia and other important issues. John will also explain how people can get more involved.

In concluding I hope next year we can make sure the public and political debate and our efforts are focused on how we ensure more people with a learning disability, autism or both, lead longer, healthier lives.

Ray James CBE

Ray brings a wealth of experience and knowledge from a career in local government to his role leading NHS England’s work to transform care for people with a learning disability and their families/carers.

He has served as Executive Director of Health, Housing and Adult Social Care at Enfield Council for over a decade and is a Past President of the Association of Directors of Adult Social Services (ADASS). Ray was awarded a CBE for services to Adult Social Care in the 2018 New Year’s Honours List.

His Local Government career began in 1984 as a Scale 1 Clerical Officer and after working in three other London boroughs he joined Enfield in 1991 where he was appointed as Director in 2006 . Enfield is a multi-award winning North London Council, it’s growing reputation for adult social care reflected in national recognition in respect of safeguarding, independent living, community involvement and transition amongst other issues. Ray has always championed the insight and expertise of people with lived experience and their families. He has consistently sought greater recognition for the front line care and support workforce.

He has held a number of roles within ADASS including Chair of the London Region, National Lead for the Regions and President. His background in Commissioning has led to extensive work on national policy issues in this area.

Ray was born and raised in the East End of London, his family and Irish Ancestry are very important to him. Ray’s studies have included dual professional qualifications and a Masters in Leadership.

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