Health guide for people with Learning Disabilities in line for national award

Work on a guide to encourage people with learning disabilities to have annual health checks and take part in national health screening has been shortlisted in the Nursing Times 2018 Awards.

The shortlisting recognises Leeds and York Partnership NHS Foundation Trust’s Health Facilitation Team’s efforts to include a variety of local and national health professionals and screening partners to develop easy-read ‘Get Checked Out’ information, which supports and encourages people with a learning disability to have health checks and screening.

Julie Royle-Evatt, Clinical Team Manager for the Health Facilitation Team, says that inspiration came from statistics which showed that local breast cancer screening uptake had dropped from 55% in 2014 – 2015 to 52% in 2015 – 2016 and national statistics which show that people with a learning disability die earlier than average (around 18 years for females and 14 years for males). Many of these deaths are preventable or avoidable. Meanwhile in Leeds, the uptake of the learning disability annual health checks was increasing which created an opportunity to encourage more people to take part in screening programmes.

“Our original 2015 ‘Get Checked Out’ booklet mentioned breast, cervical and bowel health, but it didn’t have links to accessible information about screening for a person with a learning disability. So, when we came to update the booklet, we asked partners if they wanted to be involved and the response was fantastic. We’re now redeveloping the ‘Get Checked Out’ checklist to include national campaigns and reduce health inequalities in screening uptake,” Julie said.

The new booklet has information from NHS England; Public Health England; NHS Leeds CCG and its Clinical Lead GP; the local Health Task Group and screening partners for cancer, Abdominal Aortic Aneurysm and diabetic retinopathy.  Service users and their carers and families will also have had significant input.

Julie said: “Before we began the health facilitation role, we didn’t have the luxury of working with these partners, but we’re now able to support healthcare colleagues who have a different background to us to develop generic, inclusive resources. Having accessible information for service users with a learning disability has given them confidence to work more effectively with this group of patients which will help to improve their overall health”.

“People with learning disabilities can now be partners in their own health care. The ‘Get Checked Out’ booklet and all of the other resources gives them a chance to think about their annual health check so they are able to discuss what are sometimes considered taboo/embarrassing subjects,” she added.

Although the project is not yet complete, it has already seen positive results. There’s accessible information on the team’s website which gives service users access to government-driven health screening initiatives that they might otherwise not know about. There are new links with professionals who are responsible for screening and can advise on service planning to make sure people with a learning disability aren’t overlooked.

Other spin-off benefits include:

  • Teaching more than 200 healthcare professionals & students how to work with people with a learning disability. Feedback suggests participants feel confident to change their practice to make reasonable adjustments.
  • Running a joint awareness raising programme with NHS England for admin, voluntary sector, private sector and professionals around health inequalities.
  • Being asked to help NHS England to create accessible documents to support a regional flu campaign. This should also support people for whom English is not their first language, or other vulnerable members of society as well as those who have a learning disability.
  • Developing an awareness-raising training package which is supported by all screening partners and the health facilitation team.

Future plans include creating an app. from the information in the booklet and widening the content out to include other health and service providers – for example Leeds Teaching Hospitals have developed a hospital passport document, an end of life document and documents for people with a learning disability who are having a baby.

An app would mean that paperwork could be completed online and the service user will always have access to them. In turn this should make updating information and documents much easier and increase the inclusion of a person with a learning disability in their own healthcare.

Julie and the health facilitation team will attend the Award Ceremony on October 31 at London’s Grosvenor Hotel, where they will have a tense wait to see who has won the Learning Disability Category.