What we asked for

  1. We asked for the NHS to take action to stop the scandal of 1,200 preventable deaths of people with a learning disability in hospitals every year.
  2. We asked for everyone with a learning disability should get a good quality annual health check and a health plan to help keep them well. Everyone should be offered a hospital passport so doctors and nursing staff understand their needs when they go to hospital and can give them good care.
  3. We asked for all GPs, doctors and nurses must have training on the reasonable adjustments they need to make to give quality care to people with a learning disability and their families.

Key stats

  • 1,200 people with a learning disability are dying prematurely in the health service every year.
  • Women with a learning disability die on average 20 years earlier and men 13 years earlier than the general population.
  • People with a learning disability are nearly twice as likely as other people to be admitted into hospital in an emergency.

Jayne and Jonathan's story

Hear from Jayne and Jonathan about what happened to their brother Paul in healthcare. 

Our brother Paul 

They saw his disability, not his illness. 

On New Year’s Eve in 2008, our brother Paul was in great pain and was taken to hospital. He had a perforated bowel and spent three weeks in intensive care. As soon as Paul came round he was transferred prematurely on to a general ward - but it was way too soon. What happened next was a nightmare.

Paul was severely neglected and a few days later he died.

He died because of his learning disability, plain and simple. He just wasn’t treated the same as other patients. Those last few days of Paul’s life were horrific.

We knew he was getting worse. We begged staff to do more. After Paul died we were haunted with questions. “Did we shout loud enough? What could we have done differently?”

But the doctors and nurses didn’t listen to us. They left him for up to 20 hours without being checked on, despite all of us constantly explaining how much he was deteriorating. His notes went missing and they were giving him diazepam for agitation and saying that his clamminess was all due to his disability. It turns out the medication made everything worse.

Paul died because staff only saw his disability, not his illness. This is what makes his story so tragic. Paul’s death is a scandal. Our fears are that we will see more and more deaths like Paul’s in the news.

People with a learning disability deserve equal health care. They are dying too young - this can’t be happening in the UK.

It’s so important for nurses and medical staff to listen to families. To really understand the person they are trying to treat and care for, to make the right decisions. There’s not enough understanding.

We need government leaders across the UK to make changes to protect people with a learning disability. We want it to be the same for everyone across the UK.

We know that it will be a long road but we will continue campaigning. We won’t stop until we see the changes that are required.

Paul had so much joy and warmth for everyone. We were proud he was in our family.

Paul’s legacy is to prevent this from ever happening again.

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