The government has confirmed Monday’s report will be the final LeDeR publication in the current format, with future data due to be recorded alongside other health outcomes for people with autism and ADHD in England.
In the written ministerial statement, health minister Preet Kaur Gill said the statistics highlighted in the report were “unacceptable”.
“I want to reassure you that we take them seriously,” she said.
She said the government was “committed to improving outcomes” through early intervention, as well as focusing on training to improve the identification of people with a learning disability on GP registers, to ensure they attend health checks.
NHS England has said it will roll out a “reasonable adjustment digital flag” for all disabled people to ensure that adjustments are kept in their record.
The Royal College of Nurses has previously raised concerns about the number of health staff specialising in working with patients who have learning disabilities or autism.
In its own report, published earlier this summer, it said the number of specialist practicing nurses had fallen by 44% – from 7,000 to 4,500 – in just over a decade, and only 500 new recruits to learn the specialism had been taken on this year.
Jon Sparkes OBE, chief executive of learning disability charity Mencap, said he was concerned that ending the LeDeR report in its current form could mean the issue became “deprioritised”.
“This is literally a matter of life and death, and risks undoing years of hard-won progress,” he said.
“We urgently need to know how the government will maintain independent scrutiny and, importantly, understand and tackle the causes of avoidable deaths.
“People with a learning disability need to know their lives are valued.”
For the family of Charlie Lander, the LeDeR is a crucial piece of work which highlights the health inequalities some people face.
Lander, who had severe learning disabilities and Pica syndrome – an eating disorder which leads to cravings for non-food items – died in hospital in June 2022 at the age of 48, after swallowing a plastic glove which caused a bowel obstruction.