Services should therefore avoid treating adults with learning disabilities as a homogeneous group and should monitor access, experience and outcomes by ethnicity, sex, deprivation, age and level of support need wherever data quality permits.
Best practice in healthcare and service delivery
Best practice in healthcare and service delivery for people with learning disabilities focuses on ensuring equitable access to mainstream services, rather than creating separate systems of care. Mainstream and specialist services should be accessible, responsive and able to provide additional support where required, rather than developing separate pathways by default. [12–16,18,23] Central to this approach is the consistent use of reasonable adjustments, including:
accessible letters,
Easy Read information,
longer appointments,
adapted communication,
quieter waiting areas,
support from carers or advocates, and
flexibility in how care is delivered. [11,12]
To support delivery of these reasonable adjustments, the Reasonable Adjustment Digital Flag was introduced to improve how these needs are recorded and shared across services, reducing reliance on individuals and carers repeatedly explaining the same adjustments. [13]
Annual Health Checks are a key national prevention mechanism for people aged 14 and over on GP learning disability registers. They aim to identify unmet health needs earlier, support medication review, improve uptake of screening and vaccinations, and produce a health action plan for follow-up. [17,18] Systematic review evidence shows that health checks can identify previously unrecognised health needs and lead to targeted actions, although evidence on longer-term mortality impact is more limited. [30]
For people with behaviour that challenges or complex support needs, best practice emphasises timely community-based support that prevents crisis and avoids unnecessary admission. Building the Right Support promotes community alternatives to inpatient care and reduced reliance on specialist mental health hospitals. [9,10]
Consistent with the principles of STOMP, services should provide structured medication reviews, clear documentation of indication, monitoring of side effects and access to non-medication support where behaviour reflects distress or unmet need. This approach aims to reduce inappropriate psychotropic prescribing, including antipsychotic prescribing, which remains higher among people with learning disabilities than the general population. [24,26,27]
Finally, achieving best practice requires a capable workforce. The Oliver McGowan Code of Practice sets standards for statutory learning disability and autism training for CQC-registered providers. [14] Training should help staff recognise learning disability, communicate effectively, make reasonable adjustments, avoid diagnostic overshadowing and involve families or carers appropriately.
Examples of positive practice from Camden 2022/23 LeDeR reviews included:
Instances where communication books and hospital passports had been carefully developed to ensure a smooth transition for people moving to hospices for end-of-life care;
Partnership working between integrated learning disability teams and ward staff;
Support and reasonable adjustments from learning disability liaison nurses;
Cases where supported living providers and care homes continued to provide people with emotional support and companionship in acute settings
Areas of concern regarding healthcare and service delivery highlighted by this report included a lack of reasonable adjustments at GP and specialist follow-up appointments, including a limited supply of easy-read information and sending texts people may not have read. The quality of support offered on wards when learning disability liaison nurses are not on duty was also raised. [ADD SOURCE]
Best practice in transition from children’s to adult services
Best practice in transition from children’s services to adult services is characterised by early planning, a named point of coordination, clear accountability between services, and continuity of reasonable adjustments and support after transfer. Adult services may have different eligibility thresholds and may not provide an exact equivalent to children’s services, creating a risk of ‘cliff edges’ if planning is delayed. [28,29] Transition planning should be person-centred and co-produced with the young person and their family or carers where appropriate. [28]
A named coordinator or keyworker can reduce fragmentation by acting as a consistent point of contact and helping families navigate complex systems. NHS England’s keyworker model for children and young people with learning disabilities and/or autism was developed to support joined-up care, particularly for those with complex needs or at risk of admission to mental health inpatient settings. [32]
Good transition also requires clear accountability between services. Adult and children’s services should agree who is responsible before, during and after transfer, and should ensure that reasonable adjustments, care plans, communication needs, health action plans and safeguarding concerns are shared appropriately. [28,29]
The legal framework governing transition further reinforces the importance of planned and coordinated support. The Mental Capacity Act 2005 becomes increasingly relevant as young people approach adulthood, as they may require support to participate in decisions. Capacity should be assessed for the specific decision at the specific time. Where a person lacks capacity, decisions must follow best-interest principles and involve the person, family members, carers or advocates where appropriate. [38] The Care Act 2014 also places duties on local authorities in relation to transition from children’s to adult care and support. The Act requires a transition assessment where a young person is likely to have needs for care and support after turning 18 and where such an assessment would be of significant benefit. It further emphasises wellbeing, prevention, person-centred planning and the continuity of support during periods of change. [39]