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People with learning disabilities lead project to improve East Surrey health services

People with learning disabilities have spearheaded an innovative project to make it easier for other people with a learning disability to get help from their East Surrey GP practice.

In her national role as Chair of the Royal College of General Practitioners Learning Disability special interest group, local GP and clinical lead for learning disability at NHS East Surrey Clinical Commissioning Group (CCG), Dr Jill Rasmussen, was approached by Mencap in 2011 to identify four groups of GP practices in England to join the pilot project, 'Getting it Right - from the Start'. East Surrey GPs, under the leadership of the CCG Chair Dr Joe McGilligan, were keen to support the initiative.

The project aims to empower people with a learning disability so that they have equal access to healthcare services, by supporting volunteers to:

  • audit individual services for necessary improvements, also known as 'reasonable adjustments';
  • develop skills in staff and clinicians at all levels to offer an inclusive, patient-centred and safe service; and
  • provide ongoing feedback and advice.

East Surrey CCG are celebrating the success of the initiative as part of Learning Disability Awareness Week (16-22 June 2014).

Locally recruited volunteers - eight Champions who have a learning disability, and eight Mentors as their supporters - worked in pairs to visit the 18 GP practices in East Surrey. After speaking with receptionists, practice nurses and GPs, they developed an action plan of 'reasonable adjustments', including:

  • physical access - such as improved signage, and adapting doorways or moving touchscreens for signing in for appointments to wheelchair level to support those who also have a physical disability;
  • raising awareness of learning disability - by talking to staff about life with a learning disability to break down some of the stereotypes;
  • communication issues - encouraging use of basic sign language, and being aware of body language; and
  • creating easier to read information about health services.

The volunteers also led a series of workshops for practice staff to support better understanding of people who have a learning disability and implement the necessary improvements.

A key learning point for all practices was that using easier to read information would help a wider range of people, not just those with a learning disability - for example older people and people with sensory and cognitive problems.

Dr Jill Rasmussen, said: "As the co-ordinators of health services for our residents, it's our job to make sure people with learning disabilities have the right access to local services. We can't do that unless we speak with them about their needs and act on what they tell us. This has been a thoroughly beneficial project to be part of both for our patients and healthcare staff working across East Surrey."

Locality Co-ordinator for the East Surrey pilot Lucy Darlow, said: "Living with a learning disability can make it more challenging to access routine health services. It is still too easy to assume that people who have a learning disability cannot understand anything or cannot play any part in important aspects of their lives - such as health. If people are unable to get the basic preventative care they need, in the same way as people who do not have a learning disability, their chances of living a healthy life are unfairly reduced.

"There was room for improvement in all the practices we visited, but we're pleased to say that they were open to learning and changing their approach. We have many more practices to reach so, while we're thrilled with the achievements so far, there are challenges ahead to make a visit to a GP practice something easy and practical for everyone who has a learning disability."

Volunteer Champion, Stuart Sharkey, 28, from Redhill, said: "My complex needs mean I have had a lot of contact with different GPs over the years, and my experience has varied. I've enjoyed working with the practices and trying to make a difference to the lives of people who have a learning disability so they get a better service when visiting their GP. The practice staff told us that we changed the views they previously held about people with learning disabilities so we know we've had an impact."

Gill Anderson, 74, from Whyteleafe, was a Volunteer Mentor. She said: "It has been fascinating to watch the Champions blossom. As their confidence grew, they came up with some wonderful ideas that helped to push the project forward. We have shown that people who have a learning disability are able to speak for themselves, and with small adjustments, GP practices can understand and treat them better."

Following the success of the pilot in East Surrey, there is already interest from other CCGs in Surrey to adopt the project. Opportunities to link with the local branch of national charity, Mencap, are also being explored to make sure improvements made during the pilot continue by training more healthcare staff.

For more information about the project contact Lucy Darlow on 07508 114109.