Skip to main content

Helping doctors and nurses to improve care for patients with a learning disability

NHS Digital pilot will improve care for people with a learning disability by introducing a reasonable adjustment flag on patient records2.

NHS Digital is piloting a reasonable adjustment flag on patient records, which 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.

In the trial, staff will access the information through a patient’s record on the Summary Care Record application, a program designed to share key information about patients.  In the longer term, it will be integrated with clinical systems so that staff will be able to see it on their own screens as soon as they search for the patient.

The reasonable adjustment flag can include a patient’s need for a longer appointment or a quiet waiting area as well as how to communicate with them or who to involve in decisions about their health and care. 

The pilots in Gloucestershire and Devon involve various care settings including 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. 

They will run to the end of September to test the technology behind the flag and gather feedback from staff, patients and carers.  NHS Digital will then explore a potential expansion, including widening the geographical area, giving access to more care settings and trialling integration with clinical systems.

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. This can lead to people with a learning disability dying earlier. That’s why Mencap started it’s Treat Me Well campaign.

“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.”

ENDS
Notes to editors

  1. Under the Equality Act 2010, health and care organisations have a legal duty to make it as easy for people with a disability to use health services as it is for people who do not have a disability. This is called making reasonable adjustments. These could be things like:
  • making sure there is wheelchair access in hospitals
  • providing easy read appointment letters
  • giving someone a priority appointment if they find it difficult waiting in their GP surgery or hospital
  • longer appointments if someone needs more time with a doctor or nurse to make sure they understand the information they are given.
  1. The flag has been developed in the NHS Spine and is currently accessible to pilot organisations through the Summary Care Record application (SCRa) and is clearly visible alongside other key information such as patient demographics, Summary Care Record, Child Protection Information Sharing (CP-IS) and Female Genital Mutilation Information Sharing (FGM-IS). Pilot organisations create the flag in conjunction with the patient and/or carer or in line with existing best interest decision processes.
  2. The flag complements the existing recording of reasonable adjustments locally and enhances the effectiveness of initiatives such as the national Accessible Information Standard. Along with the details of adjustment to care, the flag can optionally contain details of the key disability or long term condition that is the source of the patient’s impairment(s).
  3. The solution has been developed to support the needs of all patients within the remit of the Equality Act; including those with a physical or sensory disability, a learning disability or long-term conditions such as dementia.
  4. A software interface is being developed to facilitate future integration with local clinical systems.   

NHS Digital is the national information and technology partner of the health and care system.  Our team of information analysis, technology and project management experts create, deliver and manage the crucial digital systems, services, products and standards upon which health and care professionals depend.  Our vision is to harness the power of information and technology to make health and care better.

For media enquiries please contact media@nhsdigital.nhs.net or telephone 0300 30 33 888. Follow us on Twitter: @NHSDigital