Evidence
Surveillance decision
We will not update the guideline on mental health problems in people with learning disabilities (NICE guideline NG54).
Reasons for the decision
New evidence and information identified during surveillance was considered not to have an impact on current guideline recommendations. Overall, new evidence found was considered to support the current recommendations or, for areas where only 1 study was found, it was felt that additional evidence was needed to confirm results, therefore no impact on the recommendations is anticipated. It was noted during surveillance that some of the gaps within the recommendations can be rectified by cross referencing to other NICE guidelines or Department of Health and Social Care documents that have published since the guideline was developed and therefore, there will be some editorial amendments made to the guideline.
Evidence or intelligence was identified during surveillance in the following areas of the guideline:
Independent advocacy
Topic expert feedback noted the guideline does not discuss independent advocacy and that having appropriate access to advocacy services is essential for people with mental health conditions who communicate with health and care professionals. It is noted that NICE's guideline on decision making and mental capacity was published after NICE guideline NG54 and was written for a population group with mental health problems and learning disabilities. This guideline discusses using advocacy to support decision making and assessment under the Mental Capacity Act. It is therefore suggested that NICE guideline NG54 should be used alongside this guideline as well as other mental health services guidelines and these will be cross referred to from NICE guideline NG54 recommendation 1.1.2. NICE is also developing a guideline on advocacy services for adults with health and social care needs and this will be assessed for impact on publication.
Criminal justice settings
NICE guideline NG54 is applicable to the criminal justice setting, however there are very few recommendations that are specifically relevant to this setting. NICE's guideline on mental health of adults in contact with the criminal justice system published after NICE guideline NG54. This guideline includes adults with learning disabilities and gives relevant recommendations around assessment, management and care planning for this population group in this setting. It is therefore suggested that NICE guideline NG54 should be used alongside this guideline as well as other mental health services guidelines and these will be cross referred to from NICE guideline NG54 recommendation 1.1.2.
Discharge planning and outpatient follow up
Evidence was found to suggest that adults with intellectual and developmental disabilities and mental health problems had a higher rate of readmission to hospital for any reason. It was suggested by topic experts that discharge planning and outpatient follow up were important areas of service. NICE's guideline on transition between inpatient mental health settings and community or care home settings already covers these areas in this population group. It is therefore suggested that NICE guideline NG54 should be used alongside this guideline as well as other mental health services guidelines and these will be cross referred to from NICE guideline NG54 recommendation 1.1.2.
Supporting adult carers
Topic expert feedback highlighted gaps in NICE guideline NG54 regarding future care planning, advance care planning and replacement care. Feedback suggested that these areas could be adequately covered by cross referencing to NICE's guideline on supporting adult carers. The NICE guideline on supporting adult carers contains recommendations regarding: assessing carer's needs and putting carer support plans in place; social and community support; training; psychological and emotional support for carers; and end of life care. It is therefore suggested that recommendation 1.4.1 in NICE guideline NG54 cross references to this guideline in order to support carers further.
The content of the annual health check
Topic expert feedback suggested that the recommendations around the annual health check were too limited and needed further clarification and information, especially around screening for physical health problems. The NHS Long Term Plan also states that the NHS will bring hearing, sight and dental checks to children and young people with a learning disability. No evidence was found that considered interventions to improve diet and physical exercise for this population group therefore there can be no amendment to the guideline in this area. However the NHS Learning Disability Annual Health Check electronic clinical template (2017) contains more information and clarification around what an annual health check is and what it would consist of, which includes information on health screening, diet, hearing, sight and dental checks. It is therefore suggested that the preamble text before recommendation 1.6.1 in NICE guideline NG54 cross references to this template in order to improve the clarity and implementation of these recommendations.
Some topic experts and stakeholders requested NICE focus on other gaps in the guideline, however limited evidence and intelligence was found in these areas therefore no amendments to the guideline will take place. These areas included: service accessibility and attendance; social care personal budgets; psychological interventions; grief and bereavement and trauma informed care.
For further details and a summary of all evidence identified in surveillance, see appendix A.
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