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.
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.