Background

Approximately 2% (1.3 million) of the population has a learning disability. Patients with learning disabilities are more likely to suffer from poor physical and mental health compared with the general population, as they are likely to face health inequalities and live shorter lives. For example, on average, women with learning disabilities decease 20 years earlier than women in the general population without a learning disability. It is estimated that almost 50% of premature deaths of Patients with a learning disability are preventable. Patients with learning disabilities may be subject to delays in receiving treatment or have important symptoms overlooked due to diagnostic overshadowing related to their disability. 

Currently, there is no single index of Patients with learning disabilities and Patients may present for care anywhere across the NHS. The receiving organisation may know little about them or their need for Reasonable Adjustments. The provision of a Reasonable Adjustment Flag will ensure that as a minimum, health organisations treating the Patient will be aware that the Patient should be considered for Reasonable Adjustments and can potentially include details of their disabilities and required Reasonable Adjustments. Patients, carers and organisations such as MENCAP are strongly supportive of the requirement, with the Reasonable Adjustment Flag seen as having the potential to provide significant benefits in terms of Patient care. The Reasonable Adjustment Flag Record has been created on the NHS Spine and its use was successfully piloted through the Summary Care Record application (SCRa). The aim is now to deliver a First Of Type (FOT) integration of a clinical system with the capability on NHS Spine using a Fast Healthcare Interoperability Resources Application Programme Interface (FHIR API).

NHS Digital was commissioned to create a Reasonable Adjustment Flag on the NHS Spine for the benefit of Patients covered by the definition of disability under The Equality Act 2010. This work is intended to deliver against a key objective of the NHS long term plan which requires that by 2023/24, a digital flag in the Patient Record will ensure that Health and Care Professionals know a Patient has a learning disability or autism. Phase 1 of the work saw the capability built into the NHS Spine and piloted through the Summary Care Record application (SCRa). The current phase is developing integration capability for local NHS Patient administration systems via a FHIR API which allows Health and Care Professionals to create and retrieve Reasonable Adjustment Flag information on the NHS Spine from within their local systems without the need to additionally log into Summary Care Record application (SCRa).

The Equality Act 2010 states that organisations such as hospitals, care homes and GP surgeries must take steps to remove the barriers Patients face because of their disability. In the Act, it states that the organisation has a duty to make anticipatory Reasonable Adjustments. The potential Reasonable Adjustments can be explored during health checks or other points in the Patient’s care pathway. These can include support for communication needs (DCB1605: Accessible Information), use of care passports or more individualised Reasonable Adjustments tailored to the Patient and dependent on the Patient’s condition, functional status, the care context and the organisation providing the care.

The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD); which was funded by the Department of Health, concluded that there was a need for clearer identification of people with learning disabilities on an NHS central registration system, and for this information to be made available to Health and Care Professionals in Patient record systems.

Outline Plan

Suppliers are to use the Digital onboarding process for this FHIR API. 

This FHIR API requires all four stages to be completed:

1. Setup and eligibility
2. Non-functional requirements
3. Technical conformance requirements 
4. Legal agreement

Summary of Change

A FHIR API has been created to facilitate viewing, creation, updating and deletion of impairments and adjustments on the NHS Spine. Before a Health and Care Professional provides care to a Patient they will be able to see the Reasonable Adjustment Flag on the Patient record, and be aware that the Patient may need Reasonable Adjustments made to their care.

The Supplier will integrate their Electronic Patient Record (EPR) system with the Reasonable Adjustment Flag on the NHS Spine using the FHIR API specification. This will mean that Health and Care Professionals can view, create and update the Reasonable Adjustment Flags as required in their local EPR system. 

The integration will be facilitated by the usage of the NHS Digital API Management (APIM) platform which will streamline and improve the integration process for Suppliers integrating with new APIs.

Full Specification

As this change is an Opportunity Item, full specifications will be available at a later date.

Assurance Approach

As this change is an Opportunity Item, the assurance will be available at a later date.