NHS England has announced that the 2023 LeDeR report is being withdrawn and will be republished in January 2026.
LeDeR stands for Learning from Lives and Deaths of People with a Learning Disability and Autistic People.
It looks at why people with a learning disability or autistic people die earlier than others and what can be learned to stop this happening.
The report was already extremely late. It reviewed deaths in 2023, but it wasn’t published until September 2025, almost two years later.
Now it will be republished in 2026 because some of the data used was incomplete.
As a Rep Body we start by recognising how upsetting this news will be for families and carers who have already lost loved ones.
These reports are not just statistics, they represent real lives lost, often avoidably and every delay feels like another barrier to change.
If you are grieving and waiting for answers, this situation adds frustration and pain.
Incompetence, carelessness and disrespect cause lasting harm – even after someone has died.
Recent studies on parents’ trauma show us the terrible impact systems can have on people’s lives.
As Family Member Rep, Paula said:
‘I am appalled that a report—already extremely delayed in its release—has now been found to contain inaccuracies and potentially misleading information. This further demonstrates a troubling lack of care and consideration for the lives of people with a learning disability and highlights the urgent need for systemic change in the way care and support are governed, both in life and in death.
My thoughts are with the families who bravely contributed to this report after the devastating loss of their loved ones. Their voices must be honoured, not undermined. The system needs to ensure that these lessons are taken forward to drive meaningful improvements.’
We do not want this to stop any NHS organisation making the changes we need for people to live healthy, long lives. In fact, we worry it will confuse and delay more.
We have written to NHS England and to the Minister in charge of this, Dr Ahmed MP.
You can read what we said here.
We asked for:
- Timely publication: Reports published on time to maintain trust and drive timely improvements.
- Learn quickly: Learning from incidents is a cornerstone of the NHS’s approach to keeping people safe. Lives depend on the NHS learning and acting quickly.
- Be open and honest: If there are problems, say so in plain language, promptly and publicly to the people affected.
- Intentionally include people with a learning disability and their families: Ensure people action to reduce premature and avoidable deaths and reduce health inequalities is embedded in Fit for the Future implementation.
To all NHS Trusts and ICBS we say – you must learn and change now as this is people’s lives.