On the 17th of October, I made a speech in the Lords about the shocking statistics concerning premature deaths of people with learning difficulties. I called for mandatory participation in learning disability mortality review.

You can find my speech in full here.

We have already heard, from the noble Baroness, Lady Rawlings, the shocking statistics that men with learning disabilities die, on average, 13 years sooner than men in the general public and women with learning disabilities die 20 years sooner. Overall, 22% of those people were under 50 when they died. These are not just dry statistics, they are deeply shocking and nothing short of a national disgrace. Perhaps the most shocking statistic of all is the confidential inquiry’s finding that 37% of deaths were potentially avoidable if good quality healthcare had been provided.

As we have already heard from the confidential inquiry, one of the 18 key recommendations was the establishment of a national learning disability mortality review. A key part of the review programme, commissioned again by NHS England, is to support local areas to review the deaths of people with learning disabilities and take forward the lessons learned to improve services. I am sure we all think that is what should happen. So far, so good. However, as has already been referred to by the noble Baroness, Lady Hollins, participation in the programme is not mandatory, so, unlike the child death review process, and, indeed, many other inquiries, agencies can choose whether or not to contribute to the review of deaths of people with learning disabilities. In the current financial climate, I guess it is understandable that many organisations choose to do only what they have to. In my view, giving this issue mandatory status would undoubtedly raise the profile of the work and show that the lives and deaths of people with learning disabilities are valued. That is the crux of what we are talking about tonight.