As a learning disability nurse, I have witnessed the difficulties faced by people with a learning disability and their families in being able to communicate symptoms of ill health or understand processes when accessing health care systems. I have also witnessed the difficulties that health care staff have in being able to make reasonable adjustments for someone when they do not understand how to best to communicate with them or how the clinical environment may be over stimulating.
When people with a learning disability visit a hospital or medical setting, communication is a key barrier. People can experience difficulty in expressing themselves and this can mean that there are delays in care or they don’t get the care that they need.
The challenges faced by those using health care services during the COVID-19 pandemic makes it more important than ever that we ensure people with a learning disability are receiving safe, consistent and equitable care.
The Once for Wales Health Profile (Health Profile) helps to address this by providing key information for healthcare staff. It is a single tool that will be used throughout Wales and is clearly recognisable to all healthcare professionals. It includes personal information that people with learning disabilities can find difficult to communicate, such as medical history, emergency contacts, and information about how to best communicate with and support them. It is intended to be owned by the individual and they can be helped to fill it in.
Some people with learning disabilities already have health communication tools and will be aware of the existing ‘hospital passport’ or ‘traffic light’ forms. A review (Northway et al, 2017) revealed that there were many different types of health communication tools in circulation and that they varied considerably in design, content and length. This meant that they weren’t as effective as they could be and key information was being missed.
On behalf of Welsh Government, Improvement Cymru set about developing the Health Profile, which would include all the key information that staff across healthcare and communities should be aware of. One form to be used throughout Wales, across all health and social care settings.
We commissioned the University of South Wales to research the key information needed in a health communication tool for people with learning disabilities, including its optimal length and format. Key stakeholders were involved in this research with specific focus groups with people with learning disabilities where easy read materials were developed so that people were able to give feedback on what they felt was important to be included. We then used this research to develop the Health Profile, which can be used at all health and community visits, including hospital, GP, dentists, opticians, social care and COVID-19 vaccination centres.
Guidance has been developed to accompany the Health Profile for people with a learning disability, and for their families and paid carers, to understand how to complete it. There is also guidance for health professionals to understand how it should be used.
Our aim is that all people with a learning disability, their families and paid carers understand the benefits of the Health Profile, and that all healthcare providers embrace and use this new tool to improve the service they provide to people with a learning disability.
Today we are launching a digital campaign to help raise awareness of the Health Profile amongst people with learning disabilities. We are asking people and/or their families or paid carers to download, complete and use the Health Profile for all their future visits with health and community staff.
For people who are already using a communication tool, such as the ‘hospital passport’ or ‘traffic light form’ when the time comes to review these, we ask them to download and complete the Health Profile and continue to use it instead of the previous form.
Find out more about downloading, completing and using your own Health Profile: