Equipping doctors to support patients with learning disabilities

It’s estimated that there are around 1.4 million people with a learning disability in the UK.

It’s vital that they get the right level of support and the same opportunities as other patients when accessing healthcare. In 2018, we set out to learn more about the barriers that patients with learning disabilities face.

We attended the first meeting of Mencap’s strategic health working group and supported their Treat me well campaign. Alongside this, we emailed all UK doctors about the fundamentals of mental capacity.

We also met with people with a learning disability, their families, carers and support workers across the UK. During these meetings, we filmed interviews to help doctors understand how they can tailor their care and communication to patients with a learning disability. The video, Every patient is unique, accompanies our updated advice about patients with learning disabilities in our ethical hub.

We have a responsibility to safeguard the rights of patients who lack mental capacity and can’t make decisions for themselves. In 2018, we introduced several initiatives to raise awareness of mental capacity considerations in our fitness to practise processes.

  • All staff working on investigations received training about mental capacity.
  • There are now mental capacity leads at each stage of the investigation process, who help to address any uncertainty around mental capacity issues in a case.
  • We introduced a quality assurance process for expert reports associated with the care of patients who lack mental capacity.

Patient perspectives – Russell

Russell shared his thoughts and feelings about his healthcare experiences and the challenges he faces, to help doctors understand the unique support that patients with learning disabilities need.

Going to the doctors is important to me to be able to diagnose symptoms that I’m having and explain what problems I’m having with my health. Having a variety of health conditions, it helps me to manage and get the knowledge of these health conditions in a manner that I can understand and manage in real life.

When I go to the doctors I can feel quite anxious. Although my doctor is very good, being in the doctors’ surgery and waiting on the doctors can seem like forever.

How doctors could make it better for us when we visit is quite a wide question. There is a lot that could be done differently. I would say being person-centred from the moment a person walks through the door of a practice and meets everybody on that journey is a big factor right through to the end of the consultation when somebody leaves the building.

I can communicate well but there are people with learning disabilities that cannot communicate well or are non-verbal. I find it difficult to understand large terminology. I’ve got to ask questions about large terminology at a point that I’m already exasperated over coming in…the everyday effects of coming into big medical practices, A&E, doctors…all these add to our anxieties. These barriers need to be broken down to make it easier for the person to be able to understand and communicate their health.

In response to being involved in the Every patient is unique video, Russell said: ‘I was happy to be involved in the video, as I feel that being able to put across my experiences at the doctors helps them to get an understanding of how l feel. It is a step towards bridging the gap between doctors and people with learning disabilities.'