Evidence
Overview of 2020 surveillance methods
Overview of 2020 surveillance methods
NICE's surveillance team checked whether recommendations in NICE's guideline on mental health problems in people with learning disabilities remain up to date.
The surveillance process consisted of:
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Feedback from topic experts and patient groups via a questionnaire.
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A search for new or updated Cochrane reviews and national policy.
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Examining related NICE guidance and quality standards and NIHR signals.
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A search for ongoing research.
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Examining the NICE event tracker for relevant ongoing and published events.
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Literature searches to identify relevant evidence.
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Assessing the new evidence against current recommendations to determine whether or not to update sections of the guideline, or the whole guideline.
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Consulting on the proposal with stakeholders.
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Considering comments received during consultation and making any necessary changes to the proposal.
For further details about the process and the possible update decisions that are available, see ensuring that published guidelines are current and accurate in developing NICE guidelines: the manual.
Evidence considered in surveillance
Search and selection strategy
We searched for new evidence related to the whole guideline and, after liaising with topic experts, also added the search terms: bereavement; grief; and trauma.
We found 36 studies in a search for observational studies and randomised controlled trials published between 1 December 2015 and 6 May 2020.
We also included:
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4 relevant studies from a total of 29 identified by topic experts
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1 study identified through comments received after publication of the guideline.
From all sources, we considered 41 studies to be relevant to the guideline.
See appendix A for details of all evidence considered, and references.
Selecting relevant studies
Studies were excluded if they were conducted in countries outside of the Organisation for Economic Co-operation and Development (OECD) or the population sample was below 50 as per the full guideline inclusion criteria.
All studies suggested by topic experts were included if they were within the included study design from the original guideline development.
Ongoing research
We checked for relevant ongoing research; of the ongoing studies identified, 4 studies were assessed as having the potential to change recommendations. Therefore, we plan to check the publication status regularly and evaluate the impact of the results on current recommendations as quickly as possible. These studies are:
Intelligence gathered during surveillance
Views of topic experts
We considered the views of topic experts who were recruited to the NICE Centre for Guidelines Expert Advisers Panel to represent their specialty. For this surveillance review, topic experts completed a questionnaire about developments in evidence, policy and services related to the guideline.
We received 9 questionnaire responses from: an academic professor; a pharmacist; a paediatrician; a physiotherapist; a commissioning manager; a speech and language therapist; a voluntary worker; a nurse and NHS England. We also received a questionnaire response from a charity.
The main areas of topic expert interest were:
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Independent advocacy (see reasons for the proposal).
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Implementation of services. NICE guideline NG54 recommendations 1.2.1 and 1.2.2 already note that service delivery systems should be developed and implemented in partnership with patients and carers, and that care should be regularly audited to assess effectiveness, accessibility and acceptability. No further evidence or intelligence was found in this area therefore there will be no impact to the guideline.
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Care of children and young people. NICE's guideline on transition from children's to adults' services for young people using health or social care services is cross referenced in NICE guideline NG54 and this guideline specifically references The Children and Families act. NICE guideline NG54 recommendation 1.2.4 states that health and care professionals should ensure that young people with learning disabilities and mental health problems have in place plans that address their health, social, educational and recreational needs (including Education, Health and Care Plans), as part of their transition to adult services and adulthood. Therefore it is believed that this area is adequately represented within the guideline across the NICE portfolio of guidance and no amendment is needed.
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Social care personal budgets. No evidence was identified to suggest a need to update the guideline at this time.
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Support for carers (see reasons for the proposal).
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The lack of clarification and content of annual health checks (see reasons for the proposal).
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Psychological interventions such as pets and parent training. Only 1 study was found regarding the efficacy of interventions involving pets and no evidence was found to contradict the current recommendation around parent training, therefore there will be no amendment to the guideline at this time.
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Grief and bereavement in people with learning disabilities. Two studies were found that noted the characteristics of dealing with grief in this population group were similar to the way people who do not have intellectual disabilities cope with grief. No studies were found that compared people with and without intellectual disabilities regarding the assessment or management of grief. As there is limited evidence around this area, no amendments to the guideline will be made at this time.
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Trauma informed care. NICE guideline NG54 does not currently contain any recommendations regarding trauma informed care or post-traumatic stress disorder assessment. Very little evidence was found regarding the early identification, assessment or management of trauma within this population therefore there is not a strong case for adding this as a new area of the guideline at this time. The guideline does refer to NICE's guideline on challenging behaviour and learning disabilities, however, which suggests history of trauma and abuse should be considered in this population group.
Implementation of the guideline
Topic experts and stakeholders suggested that the guideline is not being implemented in practice because the recommendations were not specific with clear details of responsibility and accountability. The use of guidelines in practice was also reported as being unpredictable, slow and complex. This information was forwarded to our implementation team for them to consider whether action is needed.
Views of stakeholders
Stakeholders are consulted on all surveillance reviews except if the whole guideline will be updated and replaced. Because this surveillance proposal is to not update the guideline, we consulted with stakeholders.
Overall, 7 stakeholders commented. Comments were received from 3 Royal Colleges, NHS England, 2 charities, and the Care Quality Commission. Five agreed with the decision not to update and 2 (1 Royal College and 1 charity) did not agree. Of those that did not agree with the surveillance proposal, 1 organisation believed that the guideline should include more guidance around grief and bereavement and trauma informed care. They also requested that the guideline be firmer in its recommendations that annual health checks should be completed each year. The other organisation requested that the guideline be updated to include recommendations regarding dysphagia.
After considering the stakeholders comments, the surveillance decision remains the same. Limited evidence was found regarding grief, bereavement and trauma informed care and the guideline already recommends that health checks should be provided annually by GPs. The guideline also only considers the prevention, assessment and management of mental health in people with learning difficulties and any neurological conditions related to this are out of scope.
Stakeholders were also asked about their views on the impact of COVID-19 on services. Concerns were raised around the fact that many people with learning disabilities and/or autism were not having their health and support needs appropriately met, especially with the move to online care. Comments were also made regarding mental illness being the next wave of the pandemic. It was noted that the impact is clearly higher in children who are differently abled. This equality issue has been flagged for consideration across the COVID-19 rapid guidance suite. The issue around face-to- face appointments being replaced by virtual appointments is currently being investigated across the NICE guideline portfolio. NHS England have also voiced their concerns over the impact of COVID-19 on this population group in their document Implementing phase 3 of the NHS response to the COVID-19 pandemic where the importance of the annual health checks are reaffirmed.
See appendix B for full details of stakeholders' comments and our responses.
See ensuring that published guidelines are current and accurate in developing NICE guidelines: the manual for more details on our consultation processes.
Equalities
The following equalities issues were identified during the surveillance process:
Access to mental health services among people with autism
It was noted that autism is commonly a barrier to accessing mental health services for children with mild or moderate learning disabilities. No evidence was found regarding service delivery for this population and therefore no amendments to the guideline were considered necessary at this time. Recommendations on organisation and delivery of care can be found in NICE's guideline on autism spectrum disorder in adults: diagnosis and management.
Age
No specific evidence regarding the elderly and the very young was identified during guideline development or this surveillance. However, the guideline committee did attempt to address these issues with recommendations around transition (recommendation 1.2.4) and with specific recommendations relating to the identification (recommendation 1.5.5) and assessment (recommendation 1.6.16) of possible dementia. No amendments to these recommendations were considered necessary at this time.
Health inequalities and premature mortality and morbidity
NICE's guideline on community engagement: improving health and wellbeing and reducing health inequalities covers community engagement approaches to reduce health inequalities, ensure health and wellbeing initiatives are effective and help local authorities and health bodies meet their statutory obligation. No evidence was found regarding this equality issue during the surveillance process therefore no amendments were considered necessary to the guideline at this time.
Cultural difference in understanding of mental health and approaches to treatment
During development of the guideline, a potential equality issue regarding ethnicity was identified and the following recommendations were included: recommendation 1.2.2 '…provide a person-centred integrated programme of care' and recommendation 1.2.8 'all people…should have a key worker who…helps services communicate with the person and their family…in a format and language suited to the person's needs and preferences'. No further evidence was found during surveillance regarding the understanding of mental health and approaches to treatment in different cultures and therefore no amendments to the guideline were considered necessary at this time.
Gender and transgender
One stakeholder noted that there were no recommendations within the guideline that were specific to gender or for transgender people with learning disabilities. No evidence was found to suggest that these population groups required different interventions and therefore no amendment to the guideline is needed at this time.
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