The NHS Long Term plan – what our members say is important

We asked members what they think about the NHS Long Term plan.

The main points from what they said were:

  • People want to know more about what difference the Long-Term Plan will make to people’s lives – the detail on the actions


  • People told us they want to work with the NHS to make the plan happen – especially self-advocates who can lead training or organisations with particular skills and experience


  • There were ideas and suggestions for making people’s lives better. Especially on helping people leave specialist hospitals or stopping them needing to go in

We have written a plain English report about this. You can read that here

NHS Ten Year Plan Member Feedback April 2019


Sharing stories on what is important

Joe Ulleri – A life that mattered

Joe Ulleri was a much loved member of his family, and of the L’Arche Community where he lived.

He died in 2016 due to bad health care after a fall.

Lots of the hospital staff were kind and good but overall there were problems with the treatment and care he got.

An inquest decided that the problems in his care in the NHS were neglect and part of why he died. Joe’s carers did everything they could to support when he was in hospital.

His up to date hospital passport went into hospital with him, it showed his likes and dislikes, and, crucially, what his dietary needs were.

A 24 hour rota of friends, supporters, volunteers and family were by his bedside throughout his time in hospital.

Yet still he died. The hospital passport was ignored.

The rota of carers was treated as a nuisance. They were not included in decisions about Joe’s care.

They tried to stop the delays and poor communication that were part of his treatment in the Manchester Royal Infirmary but their concerns were not listened to.

Joe died of pneumonia, and lack of food.

He did not get enough food and nutrition or the right anti biotics. This happened in a modern hospital.

We know other people with learning disabilities do not get the right care in hospital and we are hearing more and more examples of when people died because of that.

Joe is a person, not a statistic.

Like all people he mattered and his death matters.

People loved Joe and they have spoken up to remind us that he had a good life and made a difference in his life.

Since the inquest into his death his family, friends and supporters have shared statements and stories about what kind of person Joe was and how loved and liked he was.

They also said that there must be changes in how health services work – no more reports but action now.

At Learning Disability England we read these with sadness and happiness.

We are glad to see people reminding us about Joe as a person. He mattered.

We hope we can all use these words and these examples of services failing to make the most important change of all – a value placed on the important lives of all fellow citizens, with and without learning disabilities.

All people with learning disabilities lives are important. The way care and support happens should be built on that belief.

We also support the work to make health and social care systems better including.

  • Mandatory training about learning disability and autism for all healthcare professionals delivered in partnership with self advocates (find out more about that here).
  • The work on sight tests, health checks and stopping over medication
  • The NHSI Learning Disability Standards

We will work with our members and partners on these

We will also keep helping people with learning disabilities speak for themselves or share the stories that show how their lives are important and must be valued.

One way we are doing that is working with self advocates from across England on building a self-advocacy movement for better health.

LDE Webinar

Gig Buddies – serious fun – Delivering serious outcomes for people with learning disabilities doesn’t need to be dull!

Friday, April 26th 2019

10.00 – 11.00

Stay Up Late’s Gig Buddies project matches people with learning disabilities with a volunteer who shares the same cultural interests to help people build stronger informal support networks and make new friendships.

In this session Paul will explain how it works, and how it’s delivering some ‘serious outcomes’ for people in a way that doesn’t feel at all serious, in fact it feels like an awful lot of fun!


Paul RichardsPaul is a founder, and the director of the charity Stay Up Late. The charity grew out of the experiences of the punk band ‘Heavy Load’ that he played bass with for 15 years. Heavy Load were also the subjects of the feature length documentary movie of the same names (which Mark Kermode rates as one of the top 5 music documentaries of the 21st century!).

Stay Up Late also pioneered Gig Buddies, the innovative volunteer befriending project which relieves social isolation through a shared love of the same cultural activities. The model is now being shared across the UK (and Australia).

Paul previously worked as the registered manager of a group home for people with learning disabilities and was the Involvement Manager’ for Southdown Housing Association. More recently he was the National Co-production Adviser for Think Local Act Personal.

Paul’s passion is ending inequality for people with learning disabilities and when he’s not working he can be found spending too much money in record shops or walking on the South Downs with his family. He has 4 kids and a dog and lives in Hove.
His catch phrase is ‘Keep It Punk!’

Mandatory training consultation by the Department Health and Social Care

Mendip House – taking what happened seriously

We have been talking about the recent news on the actions taken by the police and the regulator (CQC) after the abuse people experienced at Mendip House.

Learning Disability England (LDE) believes that organisations that are responsible for the care and support of people with learning disabilities must act in ways that help keep people safe from all kinds of abuse. If they fail to do that those organisations should be accountable and face significant punishment or sanction.

If organisations are not held responsible when they fail it sends out the wrong messages about the value of people with learning disabilities in society.

As well as organisations being responsible for their part the people who commit abuse should be prosecuted if there are criminal acts, so they take personal responsibility too.

We encourage those organisations responsible for poor care and support to use their failure as a learning experience and do better in the future – but this should be alongside public actions that demonstrate how society does not accept the actions of the organisations or any people breaking the law.

LDE is concerned that the recent decision to only issue a £4,000 fine for the financial abuse that took place at Mendip House falls well short of what should have happened to show how serious this was.

What we know about what happened at Mendip House

In 2016 Learning Disability England learnt about the abuse that had been happening at Mendip House in Somerset. We heard about it from the CQC report on the service. We wrote to the National Autistic Society telling them about our concerns and asking questions about what they had done.

National Autistic Society replied saying they take responsibility for having ‘failed badly’ and would be open about what they were doing to find out what went wrong and how they needed to change how they work.

You can see the letters here

In February 2018 National Autistic Society (NAS) shared an update on what they had done to stop abuse like this happening or to act much quicker when any thing starts going wrong. This was after the Safeguarding Adults Board report came out giving more detail of the dreadful abuse some people living at Mendip House experienced.

You can see the update from NAS here

Last week we heard that the Care Quality Commission (CQC) had fined NAS £4,000.

This fine is for NAS not following the regulations on protecting people’s money.

You can read NAS’s statement on that here

It was also confirmed that no staff or organisations are being prosecuted for what happened at Mendip House.

The member representatives at Learning Disability England have read the newspaper articles and people’s responses on social media.

Like many of them we are left feeling a lot of different emotions –

  • Fear that people’s rights are not equal to other citizens if they do not get the same access to justice when they are harmed
  • Anger that this can happen to people and was not stopped straight away
  • Disbelief that such serious financial abuse only leads to a £4,000 fine
  • Worry about the messages this sends to everyone in society about how important autistic people are

What we are doing next

Learning Disability England exists to work for change.

We are left with a lot of questions that we want to find answers to. We will use the answers to help make change happen so people with learning disabilities, autistic people, and their families get access to justice if they do experience problems and people supporting them know the agencies responsible for prosecutions or regulation will act in the best interests of the people they support.

The questions we are asking are

  1. Why was there not enough evidence to prosecute?
  2. How was evidence gathered by the police or other agencies who do that?
  3. Did the people getting evidence use good practice in getting information from autistic people or people who do not use words to communicate?
  4. Did CQC use all its powers in this situation?
  5. Why has it taken so long for this fine to be decided?
  6. What are the rules on sanctions, fines etc.
  7. What must happen to result in what sanctions?
  8. Did anyone check on what the commissioners organising or buying the support had done and make them change if there were mistakes?


We have written to CQC and The Police and Crime Commissioner asking these questions.

Click here to see the letter to police and click here to see the letter to CQC.

About us

You can find out about the Representative Body members and what we do here