People with Learning Disability, the NICE Impact Report; Reflections from Improvement Cymru

By Dr Rachel Ann Jones, Learning Disability Programme Lead and Prof John Boulton, National Director of NHS Quality Improvement and Patient Safety/Director of Improvement Cymru.

The recently published NICE Impact report on People with Learning Disability makes for difficult reading. On average people with learning disability will die at least 20 years earlier than you or I. That’s typically 23 years less life for men and 27 years less life for women. [1]

The research tells us that challenges with delivering timely, safe and effective health care contributes to avoidable deaths, 41% of adult deaths were from treatable medical causes and 24% were from preventable medical causes. [2] Sadly, these statistics are not isolated, but part of an increasing evidence base highlighting the extent to which people with learning disability experience health inequalities in the UK.

A little over two years ago, the Welsh Government provided funding for the Improvement Cymru Learning Disability programme, which consisted of a small specialist team of health care professionals, academics and researchers from across Wales. The aim of the programme was to offer improvement support in the delivery of health actions, as described in the Welsh Government’s transformation agenda the Improving Lives programme. The Improving Lives programme as a whole, was arguably the biggest investment in terms of resources and national guidance for people with learning disability in Wales for 30 years. The aim essentially to improve lives of people with learning disability in Wales by transforming service delivery on a national basis. A matter of months into the programme COVID-19 came along.

It is well documented the extent to which the COVID-19 pandemic has disproportionately affected those who already had the greatest health and social needs. People with learning disability were 6 times more likely to die from COVID-19 than other people.

The disparity faced by people with learning disability is now greater than before the pandemic. The improvement task at hand substantially more challenging than when the Improving Lives Programme was initially developed. And although we have made strides forward, including the Learning Disability Educational Framework, Once for Wales Health Profile and the Positive Behaviour Support family resource pack, in some ways we took one step forward, two steps back.

As devastating as it is, the pandemic has arguably changed some narratives around health equality, with increasing attention on vulnerable groups in our society. People with learning disability have repeatedly been in the media spotlight, as vaccination priorities and shielding guidelines were developed and defended.

Given the extent to which the pandemic has been felt unequally across our society, the recovery planning has needed to consider and respond to the result of this disproportionate affect. Health equality has been placed at the heart of the COVID-19 sustainable response and recovery in Wales. This can only be of advantage to people with learning disability and it will be essential that all work which seeks to drive quality improvement across our health and social care system considers the inequalities experienced.

The NICE report also includes specific priority areas, developed in conjunction with stakeholders, including recommendations concerning: health checks; reasonable adjustments; integration of local commissioning of health, social care and education services; and workforce development. So, whilst the report is uncomfortable, these well-articulated priorities, that include the voice of people with learning disability, many of which mirror the Improving Lives agenda provide clear direction of travel for improvement work and mechanisms with which we can hopefully make a difference.

If you are interested in knowing more about the improvement work for people with a learning disability then please get in contact:

[1] University of Bristol. [2021] The Learning Disabilities Mortality Review Annual Report 2020. Available here: as cited in NICE. [2021], Impact Report: People with a learning disability. Available from: All rights reserved. Subject to Notice of rights.

[2] NICE. [2021], Impact Report: People with a learning disability. Available here: All rights reserved. Subject to Notice of rights.

NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.