Access to healthcare for people with complex disabilities

For the 2023 update to our Potential and Possibility research, we asked people with complex disabilities about how accessible they find healthcare settings.

On this page, you’ll find out more about how they believe services can be improved and designed to best support them.

Read on to find out what our participants had to say.

For more information, check out our research into the health and wellbeing of people with complex disabilities in the UK.

Meeting information and communication needs

“I’m deaf and they insist on all appointments by phone, so I don’t ask questions and keep it as brief as possible. It’s very unsatisfactory.”

People with complex disabilities use a range of communication methods. The Accessible Information Standard should mean that people’s information and communication needs are met at all times in health and social care settings, such as GP or hospital appointments.

Our evidence shows that this isn’t always the reality for many people with complex disabilities.

  • 34% of people with complex disabilities are rarely or never asked about what they need to make their appointments accessible.
  • 19% of people said that they rarely or never get appointment letters in a format they understand.
  • 25% of people with complex disabilities said they rarely or never have communication support arranged for them if they need it.

“I use Makaton and British Sign Language (BSL) to communicate. Always have to go with my mum. GP never try to talk to me directly. No accessible information provided.”

Support from staff

Some people also shared their experiences of frustration with medical staff who are not always understanding of their condition and needs.

19% of people with complex disabilities told us that staff rarely or never meet their needs at medical appointments.

Supportive staff can make all the difference for people with complex disabilities. They can make appointments run smoothly, and reduce worries about medical treatments more broadly.

“If I see a doctor that knows me well I feel more confident about it as they know how to support me in an accessible way.”

Flexible appointments

“During the pandemic having over the phone appointments were much better. Energy-wise it is really hard to spend two hours getting to and waiting for a ten minute appointment. Wheelchair access is not always sufficient.”

People with complex disabilities told us that flexibility in the way appointments are delivered is important, especially when it comes to waiting times.

21% of people with complex disabilities say that their medical appointments rarely or never happen in a way that is accessible to them.

The move to remote appointments has been good for some people who find this less stressful, but for others it is very difficult to communicate with professionals without being face-to-face.

About this research

Potential and Possibility is an annual piece of research on the experiences and aspirations of people with complex disabilities. The research involves polling, our own survey and insights from audits of Sense services. This year (2023) is the second year we have carried out this research.  

These pages reflect the latest information from our 2023 research, building on our findings from 2022.

If you have any questions about the research please contact [email protected].