NHS England has announced that the 2023 LeDeR report is being withdrawn and will be republished in January 2026.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.

Systems Generated Trauma Report

An update for members from Sam Clark – Chief Executive at Learning Disability England.

In the last week, I went to two of the Casey Commission’s evidence sessions to speak up for members. 

This was unusual for Learning Disability England. Normally, members would take part themselves, but the Commission said only one person could attend.

The Rep Body Co-chairs and I agreed that I would go and represent all three voice groups. 

Learning Disability England is looking to appoint an Administration Lead to join the staff team.

This role is an important part of the organisation’s daily work. It includes leading the administration of memberships and finances, and supporting other team members with projects and events.

This notice is to announce the Learning Disability England Annual Members General Meeting for 2025.

Where   

The meeting will be online over Zoom.

The State of the Adult Social Care Sector and Workforce in England annual report from Skills for Care shares information about the people who work in adult social care – how many there are, what jobs they do, and the challenges employers are  facing.

The report for 2025 has just been published, read here.

It shows that the number of jobs in social care is growing and that the number of vacant posts has fallen to 7%.

That is still high though compared to other kinds of jobs like working in a shop.

The report also showed what many people already know, which is that lots of people are leaving their jobs – this can range from 42% turnover in some organisations to 14.5% in others.

Kate Green, Member of Learning Disability England, was recently invited to be part of the Transplant Games and shares her experience in this new blog…

Going to the Transplant Games was an amazing experience. It’s a bit like the Olympics, with sports like archery, track events, volleyball, and squash.

People from different transplant centres across the UK come together to take part.

Clear, accessible communication is important for everyone when using health and care services.

As Gary Bourlet, Self-advocate and Membership and Engagement Lead says:

“Everyone with learning disability should be able to understand what is being said, by doing this it empowers us and gives us independence.”

For people with learning disabilities, autism, sensory impairments, or communication needs, having information in the right format can make a big difference to how they understand and manage their health and care.

To try and help with this, there is a set of rules called the Accessible Information Standard (AIS).

This standard is used by NHS and adult social care services in England.