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People with lived experience of learning disabilities must have a bigger voice when decisions are made about health
The life expectancy of people who have a learning disability is significantly shorter than that of those who do not – and the disparity is getting worse. The average age at death of people with a learning disability is 62; this is 21 to 24 years less than people who do not have a learning disability.
Learning Disability Practice. 26, 4, 14-15. doi: 10.7748/ldp.26.4.14.s5
Published: 07 August 2023
In 2013, women with learning disabilities died on average 20 years younger than women who did not have a learning disability, with the gap at 13 years for men. So rather than people with learning disabilities getting closer to equality over the past decade, they are now even further away.
The major factors that drive reduced life expectancy, according to the Confidential Inquiry into Premature Deaths of People with a Learning Disability, include:
» Delays or problems with diagnosis or treatment.
» Problems with identifying needs.
» Difficulty providing appropriate care in response to changing needs.
These were highlighted back in 2013 but still ring true today, as has been evidenced by the many Learning Disability Mortality Review (LeDeR) reports over the past decade.
What needs to happen to address this is a fundamental shift in the balance of power. People who face reduced life expectancies and poor health outcomes must be allowed real power to tackle them. After all, those who experience these challenges knowing what does and does not work – and will clearly have a vested interested in achieving real change.
For many years the learning disability specialty has adopted the mantra ‘nothing about me without me’. But this is not borne out in people’s lived experiences; it needs to become a reality rather than lip service.
People with learning disabilities should know that they will receive the right care and treatment in the right place at the right times – and with the right input from health professionals, including learning disability nurses, to improve lives and health outcomes. For this to happen, people with learning disabilities must be in a position of power to lead the change.
One way to achieve this is to have three co-national directors for learning disabilities: one who has a learning disability, one who is a family member of a person with a learning disability, and a third who is a professional. Far too much power is in the hands of the professionals and that is not where it should lie. Professionals are not the experts on everything: we provide part of the expertise, but we do not know it all.
A panel needs to be created to assist, guide and propel the work of the co-national directors. This quality improvement panel should have a majority of people with a learning disability – perhaps the split could be 51% people with learning disabilities, 34% family members and 15% professionals. Such a panel must have real responsibility and accountability to deliver the evolution of care, health improvements and ensure quality of support.
The panel must be directly engaged in planning, designing, creating and delivering training – and ensuring that there are clear, demonstrable health and well-being gains for people with a learning disability. This national panel would also look at the development of services, the planning of quality improvements, and the monitoring, diagnostics and delivery of health and care provision.
Such improvement panels, where they currently exist, are dominated by professional voices with few people who have a learning disability. Having the voices of lived experience in the room would draw a direct line between changes being made to services and the people who will experience them, and it would help to reduce health inequalities.
This panel structure could be adapted to address other issues, such as epilepsy, diabetes and dementia, to evolve care for the better for a great many people. They could also serve to insulate services from the shifting whims of party politics, which can get in the way of progress.
It would allow policies and services the time and space to take shape, led by those who know where the challenges are and have a vested interest in addressing them.
For this shift to take root and flourish, we need to realise as a society that everyone has worth, we each add value. Salt can look like sugar: what you see is not all that an individual is, just as having a learning disability is not the sum of a person’s parts.