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Closing the healthcare gap for people with learning disabilities

Providing easy read materials, longer appointments or other adjustments for people with learning disabilities or long-term conditions can make a big difference. 

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A care worker shows information on a smartphone to a person with learning disabilities

Seeking health care for a patient with a learning disability was always a challenge even before the coronavirus (COVID-19) pandemic upended all our lives.

People may need support from family members, friends or carers, but can be left without that familiar support due to social distancing. This may leave the individuals confused, agitated and anxious when getting treatment from unfamiliar staff in new and strange environments.

Some organisations who have identified people’s specific needs, such as GPs, specialist community services and hospital liaison teams have recorded this and other relevant information in local systems to be made available when the patients are treated.   

However, this information isn’t always recorded consistently or shared with all the health and care staff who need to see it. Unfortunately, where these needs are not known, the impact can be significant. 

Creating a Reasonable Adjustment Flag

We have been working with NHS England to help address this problem by developing a ‘Reasonable Adjustment Flag’ on the NHS Spine. The flag contains details of key adjustments to care for patients with a learning disability or autism.

These key adjustments can include details of communication requirements or the need for additional support from staff or from people they know. If someone new is working with these patients, it’s really important they know these details.

As we have been developing the Reasonable Adjustment Flag, we have spoken to patients, carers and health and care staff and come across many examples of seemingly small adjustments that can transform care for a service user.

For instance, knowing that someone will become alarmed if their name is used, or if they have a fear of uniforms or certain physical objects, is critical. Bright lights and loud noises can often cause distress for someone who is autistic and can prompt a crisis. This could lead to their care appointment taking longer or not even happening at all.

What is new about this approach?

The flag serves as an immediate alert. Reasonable adjustments may be recorded in local systems and in other records such as the Summary Care Record (SCR), but they are often not always immediately available or visible to staff. A key aspect of the flag is that as soon as any member of staff looks at the Spine record, in reception for example, they can clearly see that that their service may need to be adjusted for this particular patient.

This prompt is an early opportunity to review the information in the flag, view other clinical records or any other information such as care passports or crisis plans.

The work also complements and extends the existing recording of adjustments. It is built using the existing standard for communication requirements as defined in the Accessible Information Standard DCB 1605 but expands that approach with new and existing adjustments in specific categories related to:

  • additional support from staff, carers, family or friends
  • individual care requirements requiring changes to standard clinical or administrative processes and procedures
  • adjustments to the environment in which care is provided

Health and care staff who are working with patients and carers to understand their needs and identify adjustments can review and learn from the existing example adjustments and categories.

The detail of the adjustment is recorded in supporting free text so it can be tailored to provide information for truly personalised care.

We also know that some specific adjustments cannot be fully defined by pre-existing codes. To overcome this issue, the flag uses a bespoke adjustment code. The detail of the adjustment is recorded in supporting free text so it can be tailored to provide information for truly personalised care.

The flag has been built into Summary Care Record applications (SCRa), which also provides access to a patient’s SCR, and it sits alongside other critical information such as Child Protection Information Sharing (CP-IS) and Female Genital Mutilation – Information Sharing (FGM-IS).

This new capability has been piloted in Gloucestershire and Devon and users have commented that they like the simple, structured approach to recording and sharing details of the key adjustments. They want to see it integrated in their local systems. As a result, a software interface (FHIR API) for clinical systems to integrate with the flag is being developed.

Mencap have done much work to highlight the health inequalities experienced by patients with learning disability – including that their median age of death is over 20 years less than for other members of the population. Whilst the flag pilots focussed on patients with learning disability, the capability has been developed to include adjustments to care in relation to any relevant disability, impairment or long term condition. So, in the future the flag can also benefit a wide range of other vulnerable patient groups. 

It is expected that all health and care organisations are recording and sharing this key information to benefit their patients, especially since it has become even more critical during the coronavirus crisis.

If you want to know more about the progress of this project and what the next steps are, please visit the NHS Digital website.

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Steve Robinson

Steve is a Senior Project Manager in Integration Projects at NHS Digital and is the lead for the Reasonable Adjustment Flag.

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Last edited: 19 June 2020 4:40 pm