Patient record flag can positively affect care of people with learning disabilities

18 Jun 2020 04:23 PM

Healthcare for people with a learning disability can be improved by a new flag on patient records, a pilot scheme has shown.

NHS Digital introduced the Reasonable Adjustment Flag, which lets doctors, nurses and other health and care staff know that a patient has a disability or other impairment and has specific needs that require adjustments so they get the best care.

These could include communication requirements, such as how to be contacted for appointments, or changes to the environment, for example the use of particular music to help reduce anxiety.

During Learning Disability Week (15 to 21 June), NHS Digital has published initial results from the Reasonable Adjustment Flag pilots, which took place in Gloucestershire and Devon between June 2019 and March this year.

In the trial, staff securely created, accessed and updated the information on the NHS Spine using the Summary Care Record application (SCRa), a program designed to share key information about patients to health and care staff with appropriate access rights. In the longer term, clinical and screening systems will be able to integrate with the capability so that staff will be able to see it on their screens in their own systems when they search for the patient.

During the pilot, which took place in various care settings including GP surgeries, hospitals and community services for learning disability, more than 70 flags were created by clinicians in conjunction with patients and carers. There were a wide range of adjustments identified, which could positively affect the experience and outcomes for patients and the experiences of carers and staff. Adding the Reasonable Adjustment Flag could also lead to other benefits, such as financial savings through reducing the number of missed appointments.

Bev Farrar, Learning Disability Liaison Nurse at Gloucestershire Hospitals NHS Foundation Trust, recently said:

“Being able to access the Reasonable Adjustment Flag means that we can get it right for our patients and we have had really positive feedback on it so far.

“The flag also promotes confidence in our healthcare team as it provides useful information about how to best to interact with our patients as individuals. Recently we were able to make a reasonable adjustment for a patient to have his appointment details texted to him and this helped him to attend.”

Now that the technology has been tested and feedback gathered through the initial pilot, further development and testing is taking place. It is expected the capability will be more widely available from the end of the year.

Clinicians say it could help many patients. Dr Iain Jarvis, a GP with a special interest in learning disabilities who works at Aspen Medical Practice in Gloucester, recently said:

“The key impairment and adjustment information shared through the flag would be valuable beyond learning disability and autism patients. Patients with dementia, sensory disabilities, physical disabilities, non-visible impairments such as mental health conditions and those receiving palliative care at the end of their lives could all definitely benefit.”

Dr Rob Jeeves, GP Clinical Lead for the project at NHS Digital, recently said:

“The feedback from this pilot shows that the process to create and share reasonable adjustment information through the flag is well structured, simple and quick to follow. Patients, families and their carers were involved in discussions about the patient’s needs and adjustments to care. The initiative was warmly received, with enthusiasm for the benefits arising from the wider sharing of this key information.

“The initiative also promoted collaboration between colleagues and across organisations as to how best to record well-formed reasonable adjustments on the flag and in local records.

“With further evaluation and wider use, we will be able to explore the benefits when a patient with learning disabilities accesses healthcare and sees a particular clinician for the first time. We hope having a Reasonable Adjustment Flag will mean the patient has a better experience of care, with their needs being addressed earlier and more consistently.”

Notes for Editors

  1. Around 2% of the UK population is thought to have a learning disability, so around 1.5 million people could benefit from reasonable adjustments. 
  2. 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.
  3. 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.
  4. The flag complements and extends 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).
  5. 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.
  6. A software interface is being developed to facilitate future integration with local clinical and screening systems.  
  7. This capability helps support the NHS Long Term Plan requirement that “By 2023/24, a ‘digital flag’ in the patient record will ensure staff know a patient has a learning disability or autism.”