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!’