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.