National learning disability director Ray James has said NHS England “must do better” to tackle health inequalities for people with learning disabilities.
Writing a blog entry several weeks after the release of the Learning Disability Premature Mortality Review Programme (LeDeR) report, the former ADASS president called the findings “devastatingly compelling” and recognised “significant interest and debate” had been generated by the review.
“What we know is that too many people with learning disabilities die prematurely all too often for preventable reasons. NHS England has made this a priority and the first ever mortality review process affords us the opportunity to learn quickly,” he said.
James said he would now have personal oversight on future work and would work closely with the University of Bristol, the team responsible for producing the paper.
Issues surrounding delays in treatment and “organisational dysfunction” were highlighted by the paper, which found that one in eight learning disabled deaths were “adversely affected” by service failures.
Life expectancy rates also made for grim reading with individuals dying at least 20 years younger than the rest of the general population.
The timing of the report was widely criticised after it was published on the Friday before the May bank holiday – the day after local elections.
Moreover, some felt that the publication date was insensitive and had somewhat swept the issue of preventable learning-disabled deaths under the carpet.
The learning disability director addressed this suggestion, saying there could be no doubt the work was “well intended” and “thoughtful”. He continued to say that the “quality and timeliness of reviews” had to be improved and argued the process needed “to pick up pace” to ensure reviews were complete.
Despite breaking his silence on the review, some were not impressed with James’ assessment of the programme. Sara Ryan, whose son, Connor Sparrowhawk, died in an NHS Trust in 2013, said the response was “woeful” in her blog. She took to Twitter to further express her disappointment along with others.
— Dr Sara Ryan (@sarasiobhan) 20 June 2018
Compare and contrast the speed of the Govt’s response to the issue of medicinal cannabis to the deafening silence on the premature deaths of thousands of people with Learning Disabilities. #leder pic.twitter.com/oUtni0VbA8
— Alexa Wilson (@AlexaDWilson) 19 June 2018
James added that the LeDeR process needed “to lead to change at both a local and national level”, and finished his entry by saying that it was their responsibility to involve families more in projects.
“The LeDeR report doesn’t make comfortable reading for anyone, too many families lack confidence in what is being done locally and nationally, we must seek to change that, their unparalleled insight should be the acid test of whether we are doing enough,” he said.