NHS Digital trials functionality to support patients with learning disabilities

NHS Digital has launched a pilot to test new functionality in the Summary Care Record introducing a reasonable adjustment flag on patients records.

The flag will let doctors, nurses and other health and care staff know that a patient has a learning disability and has specific needs that require adjustments to the services provided so they get the best care.

The flag has been developed in the NHS Spine and is currently accessible to pilot organisations through the Summary Care Record.

The pilots in Gloucestershire and Devon involve GP surgeries, hospitals and community services for learning disability. They will look at how care is impacted when that information is readily available to staff from the first point of contact onwards. Following evaluation of the pilot, the flag will be integrated with clinical systems and extended out wider.

Susan Hanley, Chief Executive of Leeds People First and leading learning disability campaigner, said “1.5 million people in the United Kingdom have a learning disability but it can’t always be seen.”

“For me, if the hospital had a system that told them that I wanted easy-read information and for the doctor to speak clearly with no jargon, it would be really useful as I don’t always have my health passport on me.  Some people don’t want to repeat themselves to everyone they meet so this information on a computer would help.”

Brendan Chivasa, member of the learning disability charity Mencap’s Treat Me Well campaign steering group and who has a learning disability, said “People with a learning disability, like me, can have bad experiences in hospitals because doctors and nurses don’t understand our learning disability or don’t make the reasonable adjustments we need.”

“I think it’s a really good idea to highlight someone with a learning disability via their health records so that both nurses and doctors are aware of their condition. However, there’s a lot more that can be done. Personally, health professionals understand me because I’m able to express myself verbally, but for someone who is non-verbal it’s much more difficult for them to explain their symptoms and emotions. Therefore, I think the doctors and nurses should have access to more specialist training in this field, on top of this flagging system trial.”

Dr Rob Jeeves, Clinical Lead for the project at NHS Digital, said “By helping staff to recognise their patients’ needs earlier, we can help those patients access the best possible care while reducing pressure on the NHS.”

“This pilot will explore how flagging vital information can influence the experience of care for people with a learning disability.”

“This will help to drive real improvement for a patient group that is disproportionally affected by poor health outcomes.  I welcome this step and look forward to the results of the pilot.”