Change that leads to better lives

Let’s make the good stuff common stuff

It’s Learning Disabilities Week and wherever I go in the country I see good stuff going on.

At Learning Disabilities Today in Sheffield, we heard about how people with learning disabilities and families changed the way services were commissioned and provided, and how self-advocacy groups had given people the confidence to speak out. There are also some really imaginative changes being made to services so they are more accessible. There are lots of examples in the Reasonable Adjustment digests on the Improving Health and Lives (IHaL) website, a collaboration between Public Health England, NDTi and Lancaster University. They are there to give people ideas for their own services and support. Many of the examples are not just of benefit to people with learning disabilities, but other groups who can find it difficult to use services.

The enthusiasm demonstrated by people who talk about good stuff is infectious. So, why is it that good stuff is not common stuff? Why is it that people with learning disabilities continue to die in hospital because changes or ‘reasonable adjustments’ to services are not made. They are, after all, the law?

This Learning Disabilities week we are running two events with IHaL reporting the latest from the joint Self-Assessment Framework (SAF). The SAF started out as a health framework, designed to address the issues that led to the premature deaths of people with learning disabilities in health services. It now includes a wide range of social issues and, although there are always questions about the accuracy of the data, shows huge variations in the availability and quality of services across the country. This provides a clear indication of where good stuff is missing, as well as where to go and look for it.

A fundamental part of the SAF is the involvement of people with learning disabilities and families in assessing services, and crucially agreeing actions. How can they hold services to account (a key part of government policy), if they have no information about them? In some places the SAF is treated as a paper exercise, in a few cases not done at all, so not surprisingly, there is little enthusiasm for it.

We know that people with learning disabilities have poorer health and die younger than other people. We know this is due in part to factors such as poor access to health care, failure to make reasonable adjustments, social isolation, poverty and unemployment. This means that they experience health inequalities that public services have a duty to address.

Although many of these issues are deep rooted in society, there is always something we can do about it. The Health Equalities Framework is based on the determinants or reasons people with learning disabilities experience health inequalities, and the role health and social care services can play in reducing them. The framework can be used in partnership with families and people with learning disabilities, and some services are reporting that it has changed the way they work.

There are many reasons why the good stuff is not more widespread. My colleague Chris Hatton has put his finger on this very well. But this Learning Disability Week, and every other week of the year, we should be challenging discrimination and apathy. I want to see good stuff become common stuff – it is no more than people with learning disabilities or indeed anyone else – deserves.

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