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The first phase of work has seen the capability built into the NHS Spine and available for Flag creation, viewing and updating through use of the SCR application (SCRa) and SCRa 1-click enabled clinical systems (initially in Servelec Rio).
In addition, a FHIR software Application Programme Interface (API) has been designed for integration of clinical and screening systems with the Flag. The SCRa development was piloted in Gloucestershire and Devon during the back end of 2019 and early 2020 and the findings from this are discussed below.
The Gloucestershire and Devon SCRa pilots
The pilots encompassed a range of organisations including GP practices, hospital trusts, community services including learning disability, dental and other teams providing care for patients with learning disabilities and autism who also have a range of other impairments and conditions.
a discrete number of organisations and users undertook training and business change to facilitate the creation of a number of Flags in conjunction with patients and carers
the content and utility of the Flags and the system, approach, and capability was discussed with the project team, colleagues and patients and carers as required - this provided feedback and case studies
the pilot was not a volume test – organisations created Flags for a representative number of relevant patients and provided detailed feedback on their experience
organisations undertook assurance to confirm the implementation approach (including training materials and system user guidance), the functionality within SCRa and to ensure an acceptable level of quality - specifically, that the implementation approach and functionality remain consistent with the information that is available to NHS staff and patients.
the findings are being used to validate the approach and refine the capability for further work in phase 2 and onwards.
Outcomes of the pilots
the SCRa functionality worked correctly, recording details of patient’s impairments and adjustments and presenting these suitably for viewers
users found that the system is straight forward to use, intuitive and self-explanatory
users report that Flags can be created quickly and easily and the categories / pick-lists are “educational,” helping them to understand typical key adjustments - this is particularly true of the communication adjustments defined in the national Accessible Information standard
users highlighted the issue of having to record adjustments outside their clinical system in a separate system - they would like to see the information incorporated in their own clinical systems, a prompt for rapid integration of systems using the (FHIR) software interface being developed
users are keen to see the system widely and consistently used across health and care
users generally felt all staff in the extended care team should know about the detail of the adjustments on the Flag - in some organisations, staff, such as receptionists whose role is limited to clerking in patients, may only have access to see demographics information and that a Flag exists (but not its content) - they would see a message informing them to advise colleagues that the patient requires adjustments to care and to seek further information
Feedback from the pilots
Some key themes came out from interviews with staff in the pilots. Individual examples indicate larger opportunities.
A patient’s unique needs
A significant source of benefit is the Flag’s record of a patient’s unique key individual, reasonable adjustment needs. This may often refer to something that can trigger anxiety and behavioural crises that would never be anticipated – such as “Do not mention their name”.
Mitigating life-threatening risk
The Flag can highlight risks to life, for example, ‘Feeding a risk’ for Speech and Language Therapy (SALT) patients who can choke on food. It was identified that there is presently no consensus where to record this information even though it is seen as a national problem with serious consequences.
Waiting in clinics was widely seen as a source of anxiety and behavioural crises as mentioned above. The results can be serious. One patient walked out of the clinic after being made to wait and a year later, he still had not been treated.
A community nurse, with the person’s consent, added to the Flag the things hospital staff need to know about the person's behaviour. This approached the reasonable adjustment from both angles, the person’s expectations of the hospital and the hospital’s expectations of the person.
Individual communication needs are important when scheduling and triaging appointments. The Flag content covers the person’s need to be heard and understood and how they need information to be summarised to take away. It prompts a constructive conversation with the person and / or carer which then leads to wider adjustments to care.
Poor communication has consequences. One person’s reasonable adjustment was to contact him by text as he does not answer phone calls. The unanswered calls meant that he has missed previous treatment and now needs regular hospital appointments and long-term medications.
One example included a carer who was anxious that they would not be consulted appropriately. The reasonable adjustment was to check with them as they have power of attorney and this had not been done previously.
Bringing someone to hospital is stressful. The carers involved in the pilot all hope and anticipate that the Flag will reduce this stress by taking out some of the uncertainty about what they will face and how their patient will be treated.
Service efficiency benefits
Interviewees expect that the Flag will lead to fewer DNAs (did not attends) and people leaving clinics before being treated so fewer appointments will be lost. This will then also reduce occurrences of deterioration in patients because the start of their treatment was delayed. Reception and administrative staff schedule appointments and make initial contact with patients. There is value in them seeing the Flag, so that the reasonable adjustments are acted on throughout the patient’s care.
This short film is about how sharing information can help staff in health services know the right way to work with people with a learning disability and/or autism.
Feedback indicated the average time taken to create a Flag was three minutes. Whilst this will be an on-going drawback, it is less significant than many pilot participants expected, and is more than made up for by the anticipated benefits, particularly when the patient is cared for across multiple health and care settings.
Other patient groups
The interviewees thought that the Flag would be valuable beyond learning disability and autism patients. Dementia was most frequently mentioned. Others were non-visible disabilities such as less well-functioning mentally ill people.
Initial use of the Flag is focussing on patients with learning disability, but one interviewee suggested that no group with a specific condition should be prioritised for use of the Flag and it should be immediately used for all patients that need it. Around 70% of patients' long-term or chronic conditions might meet the definition of disability under the Equality Act and suitable for a Flag and associated adjustments.
Finally, one clinician summed up the initiative:
Stakeholder pilot feedback report
The report will be made available here in July 2020.