Hospital admissions can be a scary time for disabled and autistic people and their families, particularly when it’s an emergency.

The CQC published their ‘Who I am matters’ report earlier this year, which found that people with learning disabilities and autistic people are still not being given the quality of care and treatment they have a right to expect when they go to hospital.

Supporting someone with their medical care

Our staff work closely with hospitals, GPs surgeries and other healthcare teams to make sure people we support get the best quality care possible, from planning admissions to making any reasonable adjustments that might be needed.

It’s a legal requirement for people’s care to be tailored to their specific needs but there are a few things you can do to prepare for unplanned medical situations such as:

  • Working with staff/family/friends to create a hospital passport that holds important information that hospital staff need to know to support the person in hospital
  • Supporting staff to recognise when someone is unwell and how to raise their concerns
  • Using accessible information such as easy read healthcare resources to support the person

Below are a few stories from people we support. In each example, United Response staff have fought for people’s rights to safe and appropriate medical treatment:

 

Phillip’s story

Phillip* needed an emergency blood transfusion earlier this year, after a routine blood test showed he was anaemic. But Phillip gets really anxious in hospital environments – clinical machines, uniforms and some medical terms make him very distressed.

 

Rita’s story

Rita* was diagnosed with a cardiovascular issue after our staff team noticed she’d become breathless. Despite the seriousness of the situation, a consultant at the hospital said that Rita wouldn’t ‘cope’ with the procedure because she has a learning disability.

 

James’ story

James had a difficult experience back in 2020, when healthcare staff lost his hospital passport three times and didn’t follow his eating and drinking guidance.
 

Maria’s story

When United Response started supporting Maria* in August 2022, staff in Manchester noticed she wasn’t eating or drinking and she’d lost a lot of weight very quickly.

Next steps

As highlighted by the stories above, if you or the person you’re supporting experience any problems during your hospital stay, there are a number of people and teams who can help.

These include:

  • The Hospital Safeguarding Team
  • The Patient Advice and Liaison Service (PALS). PALS can provide you with information about how to make a complaint.
  • Learning Disability Liaison Nurse or social worker (if they have one)

One positive step from this year is that mandatory learning disability and autism training is being introduced for all health and social care staff, appropriate to their role and level.

This is commonly termed ‘Oliver McGowan training’ after Oliver McGowan – a young person with disabilities and autism who died six years ago as a result of a series of medical failings.

We hope that this training will mean better outcomes for people we support, helping professionals to provide better person-centred care for people with disabilities and autism.

  • Alison Worsfold is Head of Healthcare at United Response.