In July we sent a letter to the Health Secretary, with over 40 signatures including those from bereaved families and disability campaigners. Since then, over 200 additional people have added their support here. The letter demanded action to get the LeDeR programme – ‘Learning from Lives and Deaths: people with a learning disability and autistic people’ – back on track and save lives.
We have received a reply to our letter from the Minister for Care, Stephen Kinnock MP (below). We are now expecting the Government to publish the next LeDeR report “as soon as possible in September alongside a Written Ministerial Statement.” The reply attributes delays in publication of the report, which should have been published in late 2024 and is now over 9 months late, to “practical data quality issues.”
We are concerned that while the Minister acknowledges that the “number of deaths being reported for people who are autistic without a learning disability have been very small” his response does not reflect the urgency of so many people dying preventable deaths, appearing content to wait for awareness of the ability to notify LeDeR about these deaths to increase “over time”.
Additionally, the Minister commits the Government to the following:
“We remain committed to continuing to review every death of a person with a learning disability, or who is autistic […]”
This does not reflect the current situation. The Government does not currently review every death or a person with a learning disability, or who is autistic. Other than in the case of children, via the National Child Mortality Database, which should be considered an exemplar of how learning from deaths can be done, every death is not currently reviewed. The patchwork system of reports, reviews and inquests often fails to achieve the very thing that it was created to do – to learn from the individual deaths, to identify common themes and to lead to actions which will prevent future deaths and narrow the life expectancy gap that autistic people and people with a learning disability unjustly face.
Autism Action is committed to working in partnership with bereaved people, people with lived experience and other organisations to put pressure on the Government to increase transparency, improve data collection and publication and to make real steps to save lives, not simply talk about it. We will be watching closely over the coming weeks for how the Government now responds and we will take action accordingly.
If you haven’t already added your name in support of this work, you can do so via the form below.
