21/05/2019

The ‘Learning Disabilities Mortality Review’ was set up to investigate the circumstances under which people with learning disabilities die, often prematurely, across the UK. The last Review was apparently finished at the beginning of March, but has not been published. However, some of the details of the Review have been leaked to the press- and they make for very worrying reading.

In 8% of cases examined by the Review, the ‘care’ people received harmed them, or even helped kill them. In 19 of the cases examined, ‘Learning Disability’ or ‘Downs Syndrome’ was given as a reason not to resuscitate- suggesting, appallingly, that people with a learning disability are viewed by some doctors as having less of a right to live than other people.

The South East region came in for particular criticism for failing to review deaths in a timely fashion. The backlog in our region apparently forms a sizeable portion of the approximately 3,000 deaths which have still have not been reviewed.

Readers will remember the case of young Connor Sparrowhawk, who tragically died in the bath at a treatment and assessment centre in Headington in 2013. Connor’s mother Sara Ryan has campaigned steadfastly over the last six years, first to uncover what happened to her son, and then to prevent any such needless deaths happening again.

The Review was set up following Connor’s death, and really should ensure that we learn from every single preventable death. But I am concerned that delays in processing the cases mean that essential lessons will not be learned. Indeed, almost two out of every five cases have not even had a reviewer assigned to them yet. When I asked the Minister responsible what she was doing to deal with the backlog, she said that some additional funding had been provided.

As well as funding, however, this issue needs to be given much greater priority within our NHS. Women with learning disabilities live on average 24 fewer years than women without such disabilities. (The life expectancy gap for men with learning disabilities is 19 years). Many people with learning disabilities have struggled to have their physical health conditions taken seriously and to be given the appropriate treatment. Proposed mandatory training for medical professionals in how to treat patients with learning disabilities and autism will help. But the process to put this training into place needs to be accelerated.

There is much excellent work being done locally to improve the situation, and to involve people with learning disabilities in policy-making in this area. Much of this has been driven by the impressive self-advocacy organisation ‘My Life My Choice’. It has been good to see individuals from My Life My Choice involved in discussions about reviewing deaths in Oxfordshire, for example. The group has also produced excellent materials designed specifically for people with learning disabilities, to help them get the health care they need. Overall though, we must do far more to make sure that our National Health Service treats people with learning disabilities with the respect that they deserve.