Disability: Premature Deaths

Baroness Tyler of Enfield Excerpts

Monday 17th October 2016 Lords Chamber

[Baroness Tyler of Enfield (LD)]

My Lords, I congratulate the noble Baroness, Lady Hollins, on securing this debate and on being such a tireless champion for the rights of people with learning disabilities to receive the same access to and quality of healthcare that the rest of the population takes for granted. I also congratulate the noble Baroness, Lady Fall, on her excellent maiden speech. I am sure we will be hearing much more from her. I associate myself with the fulsome tributes paid, rightly and movingly, to our late colleague Lord Rix.

As we have already heard from the noble Baroness, Lady Hollins, the 2013 Confidential Inquiry into Premature Deaths of People with Learning Disabilities was set up to investigate the avoidable or premature deaths of people with learning disabilities through a series of retrospective reviews. I hope noble Lords will forgive me for repeating several statistics. I know that those in the Chamber tonight will be familiar with them, because they are passionately concerned with this issue, but the statistics bear repetition because, in a way, they say it all. 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 so often happens when you start to delve into statistics, the situation across the country is very variable. An independent review of deaths of people with a learning disability or mental health problem in contact with Southern Health NHS Foundation Trust between 2011 and 2015, commissioned by NHS England, found a number of serious failings. These included the trust having no effective way of reporting, investigating and learning from deaths. It also found that, while 30% of deaths in adult mental health services were investigated, only 1% of those of people with learning disabilities were investigated. What are we to make of the statement made by the former chief executive of Southern Health? She said:

“We believe that Southern Health’s rate of investigations into deaths is in line with that of similar NHS organisations”.

I leave noble Lords to draw their own conclusions from that.

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.

I know there are also serious concerns over the sustainability of local reviews of deaths of people with learning disabilities once the review programme ends. Therefore, in responding, will the Minister update the House on the review’s overall progress? Does she agree that if we really want to stop people with learning disabilities dying prematurely because they are not getting good-quality healthcare, the mortality review should have a mandatory rather than an optional status?

Finally, on a related issue of sustainability, the Public Health England Learning Disabilities Observatory, set up in the wake of the independent inquiry chaired by Sir Jonathan Michael, was established to keep watch over the health of people with learning disabilities and the healthcare they receive. It also provides data, information and advice to commissioners, families and people with learning disabilities about good practice and local performance in achieving improvement. Current funding for the observatory is guaranteed only until March 2017. Therefore, what assurances can the Minister give that funding will continue to be available for the vital work that the observatory is carrying out?