An official website of the United States government
NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.
National Guideline Alliance (UK). Mental Health Problems in People with Learning Disabilities: Prevention, Assessment and Management. London: National Institute for Health and Care Excellence (NICE); 2016 Sep. (NICE Guideline, No. 54.)
It is important that services and organisations work collaboratively to ensure parity of the delivery of mental health care to individuals with learning disabilities as to those without. This includes primary care and access to mainstream services. The delivery of a coordinated care plan that is inclusive of providers, commissioners, assessors, families and the person themselves is also important, to facilitate the right support being provided at the right time.
People with learning disabilities will often, at some point in their lives, access a range of services and interventions to meet their wider, holistic needs. As discussed in Chapter 4, identifying and recognising mental health problems in someone with learning disabilities can be complex, and often relies on those who know the person well to identify how they have changed. In addition, it can be difficult for learning disability services and mental health services to align, and it is therefore essential that when an individual with learning disabilities starts to experience mental health problems, access to the appropriate mental health provision is equally available. Therefore, alignment between local mental health and learning disability services should be able to demonstrate a transparent response and access to appropriate support, both in facilitating recovery and mental wellbeing, applied to the specific requirements of the individual. For example, the Green Light Toolkit (NDTi, 2013), reviewed and reissued in 2013, focuses on enabling people with learning disabilities to access mainstream mental health services.
Since 2012, following the abuse that was uncovered in 2011 at Winterbourne View private hospital, the report Transforming care: A National response to Winterbourne View Hospital (Department of Health, 2012) has sought to refocus how services are provided to people with learning disabilities and/or autism who have behaviours that challenge and/or mental health problems. The report focuses on prevention and the use of community support rather than hospital environments because they were not conducive to the recovery of people with behaviours that challenge or autism, and as a result people remained in hospital settings for prolonged periods with little opportunity for discharge. A draft service model and transformation plan was launched in 2015 led by NHS England in collaboration with the Local Government Association and the Association of Directors of Adult Social Services. This will align with the NICE service model that is currently being formulated and that will continue to address the service approaches in meeting the needs of people with learning disabilities and/or autism and behaviours that challenge. The service model will also build on the 2014 NICE guideline on challenging behaviour and learning disabilities (NICE, 2015).
For people with learning disabilities who experience mental ill health, the 2015 Department of Health consultation report No voice unheard, no right ignored (Department of Health, 2015a) and the subsequent government response places more emphasis on individuals being supported through reasonable adjustments to meaningfully access mainstream mental health services wherever possible. The content of the report recommends fundamental changes to the approach in which mental health legislation is applied to people with learning disabilities and/or autism. These changes will require local NHS, local authorities and their partners to consider how mental health services will be provided in the future for the entire population, with inpatient treatment being the last resort.
The increasing focus of prevention and enablement starts with children and young people, with a greater recognition of the need to plan from a lifelong perspective. Transition from children’s services is often a time of increased anxiety for parents and carers. Adolescence and young adulthood can be a significant time when mental health disorders may emerge. Building families’ confidence, resources and resilience may contribute to young people’s mental wellbeing.
Awareness and recognition of possible mental health disorders and appropriate referral are essential aspects of all agencies’ responsibilities in their contact with young people with learning disabilities. Barriers to access and variability in resources have to be overcome. Collaborative working across agencies and long-term perspectives are well established and important principles in the care of children and adults with learning disabilities.
The new mandatory expectations of education, health and care plans for children and young people aged up to 25 provide the basis for improving the planning and coordination of care, particularly through the transition to adult services. The Department of Health and NHS England’s document Future in mind (Department of Health and NHS England, 2015) focuses on the promotion, protection and improvement of children and young people’s mental health without the exclusion of young people with learning disabilities. Similarly to Transforming care, Future in mind identifies the need for integrating and aligning services, to improve efficiency for individual outcomes by reducing the numbers of barriers between, and gaps in, services.
Having expertise in the recognition and management of possible mental health conditions in children and young people who are accessing child and adolescent mental health services can positively reinforce the effectiveness of multidisciplinary practice. Working closely in partnership with organisations to support young people’s development, such as by outreaching to schools or colleges and parents through providing advice, initial support and guidance, could prevent further escalation of issues and the use of more restrictive practices for the young person in the future.
In addition, the devolution agenda, reinforced by the Care Act 2014 (UK Parliament, 2014), encourages the pooling of budgets across health and social care, designing services in co-production with people experiencing the services and providing a more personalised service through personalised budgets.
This approach may help many people and their families to receive the right support, enabling better life outcomes. However, there remains a need to facilitate the ability of individuals and their families to access assessment and support at key times. This can be a challenge because services and organisations for people with learning disabilities can be hard for individuals and their families to access within traditional services, including such services’ eligibility criteria, and this may result in people slipping through the net. This can then result in a person’s mental health needs being recognised at a late stage, including in a crisis-stage intervention, and a much more intensive intervention package being required.
The review protocol summary, including the review question and the eligibility criteria used for this section of the guideline, can be found in Table 115. A complete list of review questions and review protocols can be found in Appendix F; further information about the search strategy can be found in Appendix H.
Clinical review protocol summary for the review on strategies to engage and empower service users with learning disabilities in the design, implementation and monitoring of interventions for that person’s mental health problems.
One RCT (Coelho et al., 1993) identified by the Cochrane review (Balogh et al., 2008) and included in the review on service structures to support practitioners in the effective delivery of interventions used an intervention called the ‘innovative intensive support services model’ which involved engaging and empowering service users. In this trial, staff provided individualised functional teaching and participants were taught to recognise problem situations, accept responsibility for their behaviour and move toward autonomy. See an overview of the trial and summary of findings in section 8.4.1 below.
No additional RCTs were found which addressed this review question.
No data were available for any of the critical outcomes related to this review: mental health (of the person with learning disabilities), quality of life (service user), community participation and meaningful occupation or healthcare practitioner health and well-being.
Despite the limited RCT evidence (see section 8.2.1), the group did not find it appropriate to go down the evidence hierarchy or to consider indirect evidence in this area as based on their knowledge of the service issues and literature it was not expected to be fruitful and therefore it was not judged a good use of time and resources. Additionally, the group were able to utilise feedback from the service user focus groups in this domain which was agreed to be more appropriate than extrapolating from other populations. The existing systematic reviews which were found in our preliminary search, including the Balogh et al., 2008 Cochrane review on organising effective health care services for people with learning disabilities, did not identify much additional evidence relevant to this review. However, the group were of the view that it would be inappropriate not to include some guidance on engaging and empowering service users so the group decided to develop recommendations using the modified nominal group technique. The method of the nominal group technique used in this guideline is described in Chapter 3.
Key issues in engaging and empowering service users with learning disabilities in the design, implementation and monitoring of interventions were identified from the available literature (for example Balogh et al., 2008; Oliver et al., 2005), from documents such as the Green Light Toolkit (NDTi, 2013), Transforming Care (Department of Health, 2012) and the guide from the Joint Commissioning Panel for Mental Health (Joint Commissioning Panel for Mental Health, 2013), as well as from service user focus groups and discussions during the GC meetings. These were used to generate nominal statements to be rated by the GC. These were distributed alongside nominal statements relating to the other aspects of service delivery and organisation described within this chapter. Nominal statements relating to engaging service users were designed to cover a range of areas such as the provision of information, support from family and carers and additional time taken by practitioners to thoroughly address any questions and elicit service user views. One example of a statement that was rated highly by the committee was ‘Staff members should allocate time to thoroughly explain to the person with a learning disability and a mental health problem any outcome measures that are used to monitor progress during an intervention.’
Questionnaires were distributed (round 1), and completed and returned by 11 committee members. Percentage consensus values were calculated, and comments collated, for each statement. The rankings and comments were then presented to the GC members and used to inform a discussion of the issues raised by members’ comments in relation to the draft recommendations. A second round of ratings was not deemed necessary as all statements had reasonable levels of agreement, and it was agreed that any issues could be dealt with within the wording of the recommendations. A brief summary of the process is provided in Table 116 below. The full list of statements and ratings can be found in Appendix U whilst blank copies of the questionnaires used as part of the nominal group technique process can be found in Appendix T.
No studies assessing the cost effectiveness of appropriate strategies to engage and empower service users with learning disabilities in the design, implementation and monitoring of interventions for that person’s mental health problems were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.
The GC endorsed statements stating that:
There is no evidence on the cost effectiveness of appropriate strategies to engage and empower service users with learning disabilities in the design, implementation and monitoring of interventions for that person’s mental health problems.
| Recommendations |
|
|---|---|
| Relative values of different outcomes | There was no specific review on consent, capacity and decision making but this was a theme that came out of the group consensus process on assessment, organisation and service delivery, and psychological or pharmacological interventions. |
| Trade-off between clinical benefits and harms | Not applicable |
| Trade-off between net health benefits and resource use | Not applicable |
| Quality of evidence | Not applicable |
| Other considerations | While there was no specific review on consent, capacity and decision making, important issues related to consent, capacity and decision making were raised throughout the group consensus process in all other reviews and in other discussions of evidence presented to the GC. Rather than repeating considerations for each recommendation, the GC decided that there should be some overarching recommendations on this area. As a result, the group used informal consensus to agree recommendations in this area. In line with regulations in the Mental Capacity Act (Department of Health, 2005), the GC decided that the assessment of consent and capacity for decision making should be continually assessed throughout the assessment, care and treatment of a mental health problem. This is because it is possible that this may change over time. The GC decided on the basis of the outcome of the nominal group technique in other areas (including on assessment, organisation and service delivery, and adaptions psychological interventions) to develop recommendations in the following areas:
|
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The GC discussed the importance and relevance of various outcomes in the evidence when assessing the effectiveness of strategy or supports to engage and empower services users in the design, implementation, and monitoring of interventions administered for a person’s mental health problems. In addition to the effect on the mental health problem, the GC considered community participation and meaningful occupation, quality of life/experience of care, and the effect on problem behaviour to be particularly critical outcomes which they wished to examine in the literature. Additional important outcomes included adaptive functioning including communication skills (this may be most relevant to common mental health disorders), carer health and quality of life, adverse events, rates of placement breakdown (including out-of-area placements or rates of restrictive interventions), psychiatric hospital admissions (including length of stay or other outcomes related to admission), as well as offending or re-offending. |
| Trade-off between clinical benefits and harms | There was limited evidence available from only one RCT on service models which involved an attempt to engaging and empowering service users. The study used a model which provided individualised functional teaching and participants were taught to recognise problem situations, accept responsibility for their behaviour and move toward autonomy. The study was inconclusive if a comprehensive intensive support services model (which involved encouraging participants to recognise problem situations, accept responsibility in their behaviour and move towards more autonomy) resulted in improved problem or adaptive behaviours over a standard model of service delivery but did result in an increased need for day programming and decrease need for more staff intensive residential programming. However, it is difficult to isolate the effects of this multiple component intervention. |
| Trade-off between net health benefits and resource use | There may be some modest resource implications associated with effective communication between people with learning disabilities and a mental health problem and health and social care staff working with them. The GC expressed the view that effective communication is essential for the effective care of service users and that the benefits from effective communication between staff and service users far outweigh any associated costs. Additionally the GC viewed this in part as an important aspect of making reasonable adjustments in line with relevant legislation. |
| Quality of evidence | The evidence from the one study which considered engaging and empowering service users within a multiple-component intervention was very low quality due to risk of bias, indirectness (the study is an American population for which service structures are quite different than the UK), and imprecision (largely due to its small size). |
| Other considerations | The GC decided to conduct formal group consensus in this area because of the lack of evidence and the importance of guidance in this area. The GC decided on the basis of the outcome of the nominal group technique to develop recommendations in the following areas:
|
| Recommendations |
|
|---|---|
| Relative values of different outcomes | There was no specific review on improving the experience of care but this was an area addressed through the focus group work, and qualitative outcomes on service user experience were extracted from any included studies addressing other review questions, if reported. |
| Trade-off between clinical benefits and harms | Not applicable |
| Trade-off between net health benefits and resource use | Not applicable |
| Quality of evidence | Not applicable |
| Other considerations | The GC took into account the recommendations in the Service User Experience in Adult Mental Health (NICE, 2011) and Patient Experience in Adult NHS Services (NICE, 2012b), and the recommendations in the existing guidelines relevant to children. The GC decided that while they did not wish to replicate the recommendations from these guidelines, they wished to draw attention to the recommendations in both these guidelines. This was, in part, to emphasise that much of the experience of a mental health problem is common to all people with a mental health problem irrespective of whether they have learning disabilities. The GC also noted the importance of using this guideline alongside the recommendations in the guideline on challenging behaviour and learning disabilities (NICE, 2015) as people with learning disabilities who present with challenging behaviour may have an underlying mental health problem, or may be at risk of developing a mental health problem. |
The review protocol summary, including the review question and the eligibility criteria used for this section of the guideline, can be found in Table 117. A complete list of review questions and review protocols can be found in Appendix F; further information about the search strategy can be found in Appendix H.
Clinical review protocol summary for the review on strategies to engage the family and staff/advocate of people with learning disabilities in the design, implementation and monitoring of interventions.
No RCTs were found on strategies to engage the family and staff/advocate of people with learning disabilities in the design, implementation and monitoring of interventions for that person’s mental health problems.
Despite the limited RCT evidence, the group did not find it appropriate to go down the evidence hierarchy or to consider indirect evidence in this area as based on their knowledge of the service issues and literature it was not expected to be fruitful and therefore it was not judged a good use of time and resources. Additionally, feedback was available from carer representatives on the GC which was agreed to be more useful than extrapolation from other populations. The existing systematic reviews which were found in our preliminary search, including the Balogh et al., 2008 Cochrane review on organising effective health care services for people with learning disabilities, did not identify much additional evidence relevant to this review. However, the group were of the view that it would be inappropriate not to include some guidance on engaging family and staff/advocates of people with learning disabilities so the group decided to develop recommendations using the modified nominal group technique. The method of the nominal group technique used in this guideline is described in Chapter 3.
Key issues in engaging family and staff/advocates in implementation and monitoring of interventions were identified from the available literature (for example Oliver et al., 2005), from documents such as the Francis Report (Francis, 2013), Transforming Care (Department of Health, 2012), the CORE competencies frameworks (Roth et al., 2011) and the guide from the Joint Commissioning Panel for Mental Health (Joint Commissioning Panel for Mental Health, 2013), as well as from discussions during the GC meetings. These were used to generate nominal statements to be rated by the GC. These were distributed alongside nominal statements relating to the other aspects of service delivery and organisation described within this chapter. Nominal statements relating to engaging family and staff/advocates were designed to cover a range of areas such the provision of information and attendance of family members and staff or advocates at intervention sessions. One example of a statement that was rated highly by the committee was ‘Family members or carers of people with a learning disability and a mental health problem should be provided with information about support and interventions in an appropriate language and format, including NICE’s ‘Information for the Public’.
Questionnaires were distributed (round 1), and completed and returned by 11 committee members. Percentage consensus values were calculated, and comments collated, for each statement. The rankings and comments were then presented to the GC members and used to inform a discussion of the issues raised by members’ comments in relation to the draft recommendations. A second round of ratings was not deemed necessary as it was agreed by the GC that all important issues raised in the GC comments could be addressed in the wording of recommendations. A brief summary of the process is provided in Table 118 below. The full list of statements and ratings can be found in Appendix U whilst blank copies of the questionnaires used as part of the nominal group technique process can be found in Appendix T.
No studies assessing the cost effectiveness of appropriate strategies to engage the family and staff/advocate of people with learning disabilities in the design, implementation and monitoring of interventions for that person’s mental health problems were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.
The GC endorsed statements stating that:
The GC did not agree that families and carers should be encouraged to adopt a co-therapist role, or that input relating to the progress and acceptability of interventions should be sought from these individuals via post.
No evidence on the cost effectiveness of appropriate strategies to engage the family and staff/advocate of people with learning disabilities in the design, implementation and monitoring of interventions for that person’s mental health problems is available.
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The GC discussed the importance and relevance of various outcomes in the evidence when assessing the effectiveness of strategy or supports to engage family and staff/advocate in design, implementation, and monitoring of interventions administered for a person’s mental health problems. In addition to the effect on the person’s mental health problem, the GC considered community participation and meaningful occupation, quality of life/experience of care, and the effect on problem behaviour to be particularly critical outcomes which they wished to examine in the literature. Additional important outcomes included adaptive functioning including communication skills (this may be most relevant to common mental health disorders), carer health and quality of life, adverse events, rates of placement breakdown (including out-of-area placements or rates of restrictive interventions), psychiatric hospital admissions (including length of stay or other outcomes related to admission), as well as offending or re-offending. |
| Trade-off between clinical benefits and harms | No evidence was found meeting the inclusion criteria in the protocol on the involvement of family members, carers and care workers, however this was a theme that arose repeatedly during GC discussions and therefore nominal group technique was used to develop principles. A number of authors, as well as professional and carer members of the GC and service users involved in the focus groups, identified potential clinical benefits of family and carer involvement. These included improved engagement with assessment and intervention, more consistent implementation of interventions and potentially improved clinical outcomes. Potential risks arise in cases where family relationships are strained, or abusive. Additionally the assumption of potential benefits of family and carer involvement must be balanced with the right of the service user to have a choice over who is involved and to what extent. |
| Trade-off between net health benefits and resource use | Encouraging family members, carers and care workers to be actively involved in the care of a person with learning disabilities and a mental health problem and providing them with information about support and interventions might entail minor resource implications. In any case, the GC considered that any resource implications would be probably offset by provision of more effective care and of improved outcomes associated with the additional support provided to the service users by their family members, carers and care workers. |
| Quality of evidence | Not applicable |
| Other considerations | The GC decided on the basis of the outcome of the nominal group technique to develop recommendations in the following areas:
|
The review protocol summary, including the review question and the eligibility criteria used for this section of the guideline, can be found in Table 119. A complete list of review questions and review protocols can be found in Appendix F; further information about the search strategy can be found in Appendix H.
A Cochrane review (Balogh et al., 2008) on the organisation healthcare services for people with learning disabilities was identified and formed the basis for this review, with permission from the publishers, John Wiley and Sons, and with assistance from the Effective Practice and Organisation of Care Cochrane Review Group (Sasha Shepherd, email communication, August 2015; and Daniela Gonçalves Bradley, email communication, November 2015). Relevant data from this review was considered and analysed according to the strategy set out in the guideline review protocol. While the review was not specifically focused on services for mental health, all papers which were identified and included were focused on mental health. The Cochrane review had other study inclusion criteria which were different including the inclusion of borderline learning disabilities and other study designs. As a result, the results from Balogh 2008 have been partially included and updated. The individual papers were also further assessed for quality on additional measures related to risk of bias and other aspects of GRADE (see Chapter 3).
After applying the inclusion criteria of this review, 3 of the RCTs (N=97) which were identified and included in the Cochrane review fit the inclusion criteria for this review, specifically related to service structures to support practitioners in the effective delivery of interventions: Martin et al. (2005), Oliver et al. (2005) and Coelho et al. (1993). No additional more recent papers were identified.
No studies were identified on training and supervision to support practitioners in effective delivery of interventions.
An overview of the trials included can be found in Table 120. Further information about both included and excluded studies can be found in Appendix M.
There were 2 RCTs (N=50) which met the eligibility criteria for this review: Martin et al. (2005) and Oliver et al. (2005).
Summary of findings for this comparison can be found in Table 121.
Summary of findings table for the analysis of assertive community treatment (ACT) versus standard community treatment for people (children, young people and adults) with learning disabilities and mental health problems.
The full GRADE evidence profiles and associated forest plots can be found in Appendices N and O.
The assertive community treatment model which was used in the study involved input from a community psychiatric nurse (CPN) and a clinical psychologist or occupational therapist, one of whom took on the role of case coordinator, providing as many contacts as were required per week; the standard model involved an assessment package with input from one member of the multi-professional specialist service (usually a CPN) with contact no more than once per week to monitor mental health state and ensure compliance with treatment.
While 1 study (Martin et al., 2005) explicitly excluded those with challenging behaviour (including only those diagnosed with a psychiatric disorder), the other included people with either challenging behaviour or a diagnosed psychiatric disorder, or both (Oliver 2005).
The studies included adults with mild to moderate learning disabilities.
No data were available for any of the critical outcomes of mental health (of the person with learning disabilities), problem behaviours, healthcare practitioner health and well-being, community participation and meaningful occupation.
One RCT (N=47) met the eligibility criteria for this review: Coelho et al. (1993).
Summary of findings for this comparison can be found in Table 122. The full GRADE evidence profiles and associated forest plots can be found in Appendices N and O
Summary of findings table for the analysis of innovative intensive support services model versus standard model for people (children, young people and adults) with learning disabilities and mental health problems.
The innovative intensive support services model which was used in the study consisted of contact with the service user twice per week, with staff taking on a care coordination and advocacy role, care planning in collaboration with the service user, support to improve social and adaptive functioning and reduce maladaptive behaviours, the identification of measurable goals with the service user, consultation and support to other involved staff, access to 24-hour crisis support, medication monitoring and brief individual psychotherapy (manager to participant ratio from 1:7 to 1:10). The standard model involved direct case management by the community mental health team including direct treatment services, counselling, advocacy, individual program plan development and coordination, monitoring of treatment plans and services (direct contact with services from once per month to once per quarter; manager to participant ratio 1:35).
The studies included adults with mild to moderate learning disabilities.
No data were available for any of the critical outcomes of mental health (of the person with learning disabilities), healthcare practitioner health and well-being, community participation and meaningful occupation or quality of life (service user).
Despite the limited RCT evidence (see section 8.5.1), the group did not find it appropriate to go down the evidence hierarchy or to consider indirect evidence in this area as based on their knowledge of the service issues and literature it was not suspected to be fruitful and therefore it was not judged a good use of time and resources. Expert consensus was considered to be the best available evidence in this instance. The existing systematic reviews which were found in our preliminary search, including the Balogh et al., 2008 Cochrane review on organising effective health care services for people with learning disabilities, did not identify much additional evidence relevant to this review. However, the group were of the view that it would be inappropriate not to include some guidance on service structures, training and supervision so the group decided to develop recommendations using the modified nominal group technique. The method of the nominal group technique used in this guideline is described in Chapter 3.
Key issues in developing service structures, training and supervision to support practitioners in the effective delivery of interventions for people with learning disabilities and mental health problems were identified from the available literature (for example Brock, 2015; Salvador-Carulla, 2015). Policy documents including the Francis Report (Francis, 2013), Transforming care (Department of Health, 2012), the BPS CORE Competence Frameworks for supervision of psychological therapies (Roth & Pilling, 2007) and the guide developed by the Joint Commissioning Panel for Mental Health(Joint Commissioning Panel for Mental Health, 2013) were also consulted, as well as feedback from service user focus groups and discussions during the GC meetings. These were used to generate nominal statements to be rated by the GC, which were then distributed alongside nominal statements relating to the other aspects of service delivery and organisation described within this chapter. Nominal statements relating to engaging service users were designed to cover a range of areas such as location of services, competencies required of staff who work with this population and supervision. One example of a statement that was rated highly by the committee was: ‘Services for people with a learning disability and a mental health problem should be delivered flexibly, taking into account the person’s needs (including financial considerations, mobility needs or any anxieties about travel)’.
Questionnaires were distributed (round 1), and completed and returned by 11 committee members. Percentage consensus values were calculated, and comments collated, for each statement. The rankings and comments were then presented to the GC members and used to inform a discussion of the issues raised by members’ comments in relation to the draft recommendations. A second round of ratings was completed in order to further clarify comments from the GC and issues raised during the first round of ratings. A brief summary of the process is provided in Table 123 below. The full list of statements and ratings can be found in Appendix U whilst blank copies of the questionnaires used as part of the nominal group technique process can be found in Appendix T.
No studies assessing the cost effectiveness of appropriate service structures, training and supervision to support practitioners in the effective delivery of interventions for people with learning disabilities and mental health problems were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.
The GC endorsed statements stating that:
The GC endorsed statements stating that:
No evidence on the cost effectiveness of appropriate service structures, training and supervision to support practitioners in the effective delivery of interventions for people with learning disabilities and mental health problems is available.
The review protocol summary, including the review question and the eligibility criteria used for this section of the guideline, can be found in Table 124. A complete list of review questions and review protocols can be found in Appendix F; further information about the search strategy can be found in Appendix H
Clinical review protocol summary for the review on improving accessibility of services.
One RCT (N=1) was found on improving accessibility of services for people with learning disabilities and mental health problems: Raghavan et al. (2009).This paper (which includes young people) does not meet the inclusion criteria for the Cochrane review which is restricted to adults only.
An overview of the trials included can be found in Table 125. Further information about both included and excluded studies can be found in Appendix M.
Study information table for trials included in the analysis of specialist liaison worker model versus no liaison worker for young people and adults with learning disabilities and mental health problem.
Summary of findings can be found in Table 126. The full GRADE evidence profiles and associated forest plots can be found in Appendices N and O.
Summary of findings table for the analysis of specialist liaison worker model versus no liaison worker for young people and adults with learning disabilities and mental health problem.
The paper combined the results of all degree of learning disabilities so it was not possible to examine the results by degree.
The trial screened participants for inclusion using the Reiss Screen for Maladaptive Behaviour; those considered to have either had a mental health problem or a challenging behaviour on this scale were included in the study.
No data were available for the critical outcomes of problem behaviours or community participation and meaningful occupation.
Despite the limited RCT evidence (see section 8.5.1), the group did not find it appropriate to go down the evidence hierarchy as based on their knowledge of the service issues and literature it was not expected to be fruitful and therefore it was not judged a good use of time and resources. Given the specific issues faced by people with learning disabilities and mental health problems, extrapolation was agreed to be inappropriate. The existing systematic reviews which were found in our preliminary search, including the Balogh et al., 2008 Cochrane review on organising effective health care services for people with learning disabilities, did not identify much additional evidence relevant to this review. However, the group were of the view that it would be inappropriate not to include some guidance on improving accessibility of services so the group decided to develop recommendations in this area using the modified nominal group technique. The method of the nominal group technique used in this guideline is described in Chapter 3.
Key issues in improving accessibility of services for this population were identified from the available literature (for example Balogh et al., 2008), including as the Green Light Toolkit (NDTi, 2013), Transforming Care (Department of Health, 2012), and (Joint Commissioning Panel for Mental Health, 2013), as well as from discussions during the GC meetings. These were used to generate nominal statements to be rated by the GC. These were distributed alongside nominal statements relating to the other aspects of service delivery and organisation described within this chapter. Nominal statements relating to accessibility were designed to cover a range of factors that can impede or facilitate access including flexibility of service delivery, cultural sensitivity and good communication. One example of a statement that was rated highly by the committee was ‘Services for people with a learning disability and a mental health problem should be delivered flexibly, taking into account the person’s needs (including financial considerations, mobility needs or any anxieties about travel)’.
Questionnaires were distributed completed and returned by 11 committee members. Percentage consensus values were calculated, and comments collated, for each statement. The rankings and comments were then presented to the GC members and used to inform a discussion of the issues raised by members’ comments in relation to the draft recommendations. A second round of ratings was not deemed necessary as it was agreed by the GC that all important issues raised in the GC comments could be addressed in the wording of recommendations. All statements were used to draft recommendations. A brief summary of the process is provided in Table 127 below. The full list of statements and ratings can be found in Appendix U whilst blank copies of the questionnaires used as part of the nominal group technique process can be found in Appendix T.
Summary of nominal group technique process followed for the development of recommendations on improving accessibility of services for people with mental health problems and learning disabilities.
No studies assessing the cost effectiveness of interventions aimed at improving accessibility of services for people with learning disabilities and mental health problems were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.
The GC endorsed statements stating that:
No evidence on the cost effectiveness of interventions aimed at improving accessibility of services for people with learning disabilities and mental health problems is available.
The review protocol summary, including the review question and the eligibility criteria used for this section of the guideline, can be found in Table 128. A complete list of review questions and review protocols can be found in Appendix F; further information about the search strategy can be found in Appendix H.
Clinical review protocol summary for the review on effective models or support for transition between services.
No RCTs were found on effective models or support for transition between services for people with learning disabilities and mental health problems.
Despite no RCT evidence in this area, the group did not find it appropriate to go down the evidence hierarchy or to consider indirect evidence in this area as based on their knowledge of the service issues and literature it was not expected to be fruitful and therefore it was not judged a good use of time and resources. The existing systematic reviews which were found in our preliminary search, including the Balogh et al., 2008 Cochrane review on organising effective health care services for people with learning disabilities, did not identify much additional evidence relevant to this review. However, the group were of the view that it would be inappropriate not to include some guidance on providing effective support for transition between services so the group decided to develop recommendations using the modified nominal group technique. The method of the nominal group technique used in this guideline is described in Chapter 3.
Key issues in providing effective support for transition in this population were identified from the available literature (for example Balogh et al., 2008), from documents including the Transforming Care (Department of Health, 2012), the guide from the Joint Commissioning Panel for Mental Health (Joint Commissioning Panel for Mental Health, 2013) and the Francis Report (Francis, 2013), as well as from discussions during the GC meetings. These were used to generate nominal statements to be rated by the GC. These were distributed alongside nominal statements relating to the other aspects of service delivery and organisation described within this chapter. Nominal statements relating to transition were designed to cover a range of areas such as ensuring continuity of care and where responsibility should lie for the transmission of information. One example of a statement that was rated highly by the committee was ‘The person with a learning disability and a mental health problem and their families and carers should be involved in the planning of transitions’.
Questionnaires were distributed, and completed and returned by 11 committee members. Percentage consensus values were calculated, and comments collated, for each statement. The rankings and comments were then presented to the GC members and used to inform a discussion of the issues raised by members’ comments in relation to the draft recommendations. A single statement was included in a second round of ratings, however it was agreed by the GC that all other important issues raised in the GC comments could be addressed in the drafting of the recommendations. A brief summary of the process is provided in Table 129 below. The full list of statements and ratings can be found in Appendix U whilst blank copies of the questionnaires used as part of the nominal group technique process can be found in Appendix T.
Summary of nominal group technique process followed for the development of recommendations on providing effective support for transition between services for people with mental health problems and learning disabilities.
No studies assessing the cost effectiveness of models or support for transition between services for people with learning disabilities and mental health problems were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.
The GC endorsed statements stating that:
No evidence on the cost effectiveness of models or support for transition between services for people with learning disabilities and mental health problems is available.
The review protocol summary, including the review question and the eligibility criteria used for this section of the guideline, can be found in Table 130. A complete list of review questions and review protocols can be found in Appendix F; further information about the search strategy can be found in Appendix H.
Clinical review protocol summary for the review on coordination and communication with key persons and services in the life of the person with learning disabilities and mental health problems.
One RCT (Coelho et al., 1993) identified by the Cochrane review (Balogh et al., 2008) and included in the review on service structures to support practitioners in the effective delivery of interventions used the ‘innovative intensive support services model’ which involved improving coordination and communication with key persons and services. The model used in the study aimed to unify agency services with joint networking, consultation and problem solving. See the overview of the trial and summary of findings in 8.4.1 above.
No additional RCTs were found which addressed this review question.
No data were available for any of the critical outcomes related to this review: mental health (of the person with learning disabilities), quality of life (service user), community participation and meaningful occupation or healthcare practitioner health and well-being.
Despite the limited RCT evidence (see section 8.7.1), the group did not find it appropriate to go down the evidence hierarchy as based on their knowledge of the service issues and literature it was not expected to be fruitful and therefore it was not judged a good use of time and resources. Additionally, given the specific issues faced by people with learning disabilities and mental health problems in the coordination and communication of services, extrapolation from populations without learning disabilities was deemed inappropriate. The existing systematic reviews which were found in our preliminary search, including the Balogh et al., 2008 Cochrane review on organising effective health care services for people with learning disabilities, did not identify much additional evidence relevant to this review. However, the group were of the view that it would be inappropriate not to include some guidance on coordination and communication with key persons and services so the group decided to develop recommendations using the modified nominal group technique. The method of the nominal group technique used in this guideline is described in Chapter 3.
Key issues in improving coordination and communication with key people and services were identified from the available literature (for example Balogh et al., 2008), from documents such as the Green Light Toolkit (NDTi, 2013), and the guide from the Joint Commissioning Panel for Mental Health (Joint Commissioning Panel for Mental Health, 2013), as well as from discussions during the GC meetings and service user focus-group feedback. These were used to generate nominal statements to be rated by the GC. Nominal statements relating to improving coordination and communication were designed to cover a range of areas such as the use of key workers and provision of accessible information. One example of a statement that was rated highly by the committee was ‘For people with a learning disability and a mental health problem, a proactive approach should be taken to the sharing of information with key people and services, in line with local procedures and with the permission of the person with a learning disability and a mental health problem’.
Questionnaires were distributed, and completed and returned by 11 committee members. Percentage consensus values were calculated, and comments collated, for each statement. The rankings and comments were then presented to the GC members and used to inform a discussion of the issues raised by members’ comments in relation to the draft recommendations. A second round of ratings was not deemed necessary as it was agreed by the GC that all important issues raised in the GC comments could be addressed in the wording of recommendations. A brief summary of the process is provided in Table 131 below. The full list of statements and ratings can be found in Appendix U whilst blank copies of the questionnaires used as part of the nominal group technique process can be found in Appendix T.
Summary of nominal group technique process followed for the development of recommendations on improving coordination and communication with key persons and services in the life of the person with mental health problems and learning disabilities.
No studies assessing the cost effectiveness of approaches with regard to the coordination and communication with key persons and services in the life of a person with learning disabilities and mental health problems were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.
The GC endorsed statements stating that:
There is no evidence on the cost effectiveness of approaches with regard to the coordination and communication with key persons and services in the life of a person with learning disabilities and mental health problems.
| Recommendations | Organising effective care
|
|---|---|
| Relative values of different outcomes | The GC discussed the importance and relevance of various outcomes in the evidence when assessing the effectiveness of models for service delivery (service structure), transitions between services, or interventions to improve accessibility. In addition to the effect on the mental health problem, the group considered community participation and meaningful occupation, quality of life/experience of care, and the effect on problem behaviour to be particularly critical outcomes which they wished to examine in the literature. Additional important outcomes included adaptive functioning including communication skills (this may be most relevant to common mental health disorders), carer health and quality of life, adverse events, rates of placement breakdown (including out-of-area placements or rates of restrictive interventions), psychiatric hospital admissions (including length of stay or other outcomes related to admission), as well as offending or re-offending. |
| Trade-off between clinical benefits and harms | Service structures The GC noted the scarcity of studies on service structures for people with learning disabilities and mental health problems, with only 3 trials covering 2 types of interventions. The group noted that there appeared to be very little difference between assertive community treatment and standard community treatment on all outcomes from studies based in the UK. The authors reported that part of the reason why there was no difference between groups was likely to have been because of the difficulty in defining assertive community treatment. They also noted that the intervention and standard community treatment may have been too similar in content. One study considered an innovative intensive support services model which involved multiple components in the intervention. While the intervention appeared to reduce the need for staff intensive residential programming or day programming, the effects of the intervention on problem or adaptive behaviour are less clear. Furthermore, given the multiple component of the intervention, it is difficult to isolate which component is effecting the outcome. Transition between services No evidence meeting the inclusion criteria in the protocol was found on effective transition between services. See discussion in ‘Other considerations’ below. Accessibility of services The GC noted the scarcity of studies on improving accessibility of services for people with learning disabilities and mental health problems. The only RCT which reported on improving access to services reported that the use of a liaison worker appeared to improve the frequency of contacts with services compared to a control group. Qualitative outcomes from focus groups were also reported by the study which showed that both the individuals and families/carers of those who had the assistance of a liaison worker felt better equipped to access mental health services while those in the control group felt they had continuing difficulties in obtaining help they needed. This fed into the development of nominal statements. The study reported that mental health as measured on the strength and difficulties questionnaire was improved with the use of a liaison worker over the control group but there was little certainty in this result. In terms of carer outcomes, carer quality of life was very uncertain. Carer mental health on the General Health Questionnaire was again very uncertain. The GC considered the importance of having support in place for practitioners to deliver effective interventions in the form of service structures, training and supervision; of having clear pathways of transition; and having clear pathways of support to access services, However, they appreciated that having service structures in place may be considered a harm if it limits individual choice. They raised concerns about the current lack of locally available services, particularly for those who are sufficiently unwell that they require inpatient mental health treatment. They also discussed associated difficulties, such as the vulnerability of people with learning disabilities on generic wards and environmental concerns, particularly for those with sensory sensitivities. |
| Trade-off between net health benefits and resource use | The GC acknowledged the considerable resource implications of establishing person-centred integrated programmes of care across all health and social care services and support and education providers or people with learning disabilities and mental health problems. However, they expressed the view that formalising and integrating care pathways for people with learning disabilities and mental health problems, including transition between and within services, would enable more effective delivery of care and better outcomes for service users, reducing, at the same time, the high variation in care costs resulting from provision of ineffective and poorly coordinated care. The GC also noted the response of the Department of Health to the Winterbourne report (Transforming Care) and the emphasis given to the need for personalised care and support planning for people with learning disabilities. The GC estimated that the additional healthcare resources required to ensure acute inpatient care of people with learning disabilities and a severe mental health problem in a local setting are modest and comprise the presence of staff with skills and knowledge in the care and treatment of people with learning disabilities in the setting. The GC expressed the opinion that locally provided acute inpatient care is beneficial to the service users and their carers in terms of clinical outcomes and accessibility and may ultimately lead to a reduction in total care costs, since it is expected to result in more effective, integrated delivery of care. The GC noted that the Department of Health, in response to the Winterbourne report (Transforming care), has published guidance highlighting the need for people with learning disabilities to have access to the support and services they need locally, where possible, near family and friends. The GC expressed the view that providing local services for the acute treatment of severe mental health problems in this population entails an equality issue: people with severe mental health problems who also have learning disabilities should have access to locally available mental health inpatient settings, the same way as people with severe mental health problems but without learning disabilities have. Finally, the GC expressed the opinion that improving access to NICE- recommended interventions for the treatment and management of mental health problems in people with learning disabilities will ensure efficient use of resources and enhance equality within the services. |
| Quality of evidence | Service structures The overall quality of the evidence on service structures was low and very low. The studies were all quite small with wide confidence intervals in the estimates so many outcomes were downgraded as imprecise. The trial on innovative intensive support services model was considered to be indirect since it was based in the US where services are very different; the group also noted that the study was quite old, as well. Accessibility of services Overall the quality of the evidence on improving accessibility was very low. The one RCT addressing this question was considered to have risk of bias and was a pilot RCT with very few patients so may not have the adequate power to show a difference in outcomes between groups (this was reflected in the wide confidence intervals for most outcomes, resulting in low precision). The GC noted that the intervention in the study considered was designed for a specific subpopulation in the UK (from a Pakistani and Bangladeshi community). As a result, particular aspects of the intervention may be only culturally applicable to this subpopulation and a similar intervention may not have the same effect in other populations in the UK. |
| Other considerations | Service structures The GC noted that the existing trials in this area were conducted because a post-hoc analysis of UK based trial of assertive community treatment (the UK700) suggested that assertive community treatment may be useful in people with borderline IQ. They noted that the positive effects of assertive community treatment in the UK have not been shown in most UK trials. The GC also noted that this may be because the American trials are in psychosis where the ‘standard care’ is viewed to be of a poorer quality to that provided in the UK so a difference between the intervention and control groups may be exaggerated. Furthermore, both the authors and the GC noted that the reason why no difference was shown between assertive community treatment and control may be because the standard care in the trials may have been quite good as both were conducted in areas that have relatively good services. The GC decided to conduct formal group consensus in this area because of the lack of evidence and the importance of guidance in this area. On the basis of the outcome of the nominal group technique, the GC developed recommendations on service delivery in areas including:
Comments were received from stakeholders and discussed with the GC relating to the need to audit services in order to ensure that they are accessible and acceptable to service users. The recommendations have been amended to incorporate this issue. Transition between services The GC decided on the basis of the outcome of the nominal group technique to develop recommendations in the following areas:
Accessibility of services The GC decided on the basis of the outcome of the nominal group technique to develop recommendations in the following areas:
|
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The GC discussed the importance and relevance of various outcomes in the evidence when assessing the effectiveness of models for service delivery (service structure). In addition to the effect on the mental health problem, the group considered community participation and meaningful occupation, quality of life/experience of care, and the effect on problem behaviour to be particularly critical outcomes which they wished to examine in the literature. Additional important outcomes included adaptive functioning including communication skills (this may be most relevant to common mental health disorders), carer health and quality of life, adverse events, rates of placement breakdown (including out-of-area placements or rates of restrictive interventions), psychiatric hospital admissions (including length of stay or other outcomes related to admission), as well as offending or re-offending. |
| Trade-off between clinical benefits and harms | Very little evidence was found on improving coordination and communication. The evidence was limited to one study on service models which involved an attempt to unify agency services with joint networking, consulting and problem solving. The study was inconclusive if a comprehensive intensive support services model (which involved encouraging participants to recognise problem situations, accept responsibility in their behaviour and move towards more autonomy) resulted in improved problem or adaptive behaviours over a standard model of service delivery but did result in an increased need for day programming and decrease need for more staff intensive residential programming. However it was difficult to isolate the effects of this multiple component intervention. |
| Trade-off between net health benefits and resource use | There are costs associated with the appointment of a key worker involved in the care and monitoring of a person with learning disabilities and a serious mental illness. However, co-ordination of care by a key worker for people with a serious mental illness is standard practice, although a key worker may not always be designated to people with learning disabilities and a serious mental illness. The GC expressed the view that this might raise equality issues as not designating a key worker to people with learning disabilities and a serious mental illness would be discriminatory against this population. The GC expressed the view that costs incurred by the appointment of a key worker involved in the care of people with learning disabilities and serious mental illness, in cases where a key worker has not been already designated, are offset by better outcomes for service users, their family and carers as well as cost-savings resulting from efficient coordination and use of existing resources. |
| Quality of evidence | The evidence from the one study which considered communication and coordination within a multiple-component intervention was very low quality due to risk of bias, indirectness (the study is an American population for which service structures are quite different than the UK), and imprecision (largely due to its small size). |
| Other considerations | The GC decided to conduct formal group consensus in this area because of the lack of evidence and the importance of guidance in this area. The GC decided on the basis of the outcome of the nominal group technique to develop recommendations in the following areas:
|
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The GC discussed the importance and relevance of various outcomes in the evidence when assessing the effectiveness of models for service delivery (service structure). In addition to the effect on the mental health problem, the group considered community participation and meaningful occupation, quality of life/experience of care, and the effect on problem behaviour to be particularly critical outcomes which they wished to examine in the literature. Additional important outcomes included adaptive functioning including communication skills (this may be most relevant to common mental health disorders), carer health and quality of life, adverse events, rates of placement breakdown (including out-of-area placements or rates of restrictive interventions), psychiatric hospital admissions (including length of stay or other outcomes related to admission), as well as offending or re-offending. |
| Trade-off between clinical benefits and harms | No evidence meeting the inclusion criteria in the protocol was found on staff training and supervision to support practitioners in the effective delivery of interventions. |
| Trade-off between net health benefits and resource use | Training and supervising health and social care staff working with people with learning disabilities and a mental health problem is likely to incur significant costs. Nevertheless, the GC expressed the view that care and support of people with learning disabilities by trained and supervised staff will more likely lead to better and more timely identification and management of mental health problems, and that the associated benefits to service users, their family and carers will outweigh training and supervision costs. Furthermore, the GC noted that the Department of Health, in response to the Winterbourne report (Transforming care), acknowledged the importance of appropriate training and continuous support for staff working with people with learning disabilities, so that staff obtains the skills and the knowledge that will enable them to provide appropriate and effective care to people with learning disabilities. Staff that has received no or poor training, as well as under-supported staff, has been shown to provide poor quality of care with bad outcomes for service users, indicating that training and supervision of staff working with people with learning disabilities represents an efficient use of resources. |
| Quality of evidence | Not applicable. |
| Other considerations | The GC decided to conduct formal group consensus in this area because of the lack of evidence and the importance of guidance in this area. The GC decided on the basis of the outcome of the nominal group technique to develop recommendations in the following areas:
|
This recommendation and recommendations 5, 22, 51 and 52 update and replace recommendation 1.3.3.2 in the NICE guideline on supporting people with dementia and their carers in health and social care.
For people with milder learning disabilities, what is the clinical and cost effectiveness of delivering treatment for psychosis within a learning disabilities service, compared with a generic mental health service (including with support from learning disabilities specialists)?
For people with milder learning disabilities, what is the clinical and cost effectiveness of delivering treatment for mental health conditions other than psychosis within a learning disabilities service, compared with a generic mental health service including with support from learning disabilities specialists?
All rights reserved. NICE copyright material can be downloaded for private research and study, and may be reproduced for educational and not-for-profit purposes. No reproduction by or for commercial organisations, or for commercial purposes, is allowed without the written permission of NICE.
Your browsing activity is empty.
Activity recording is turned off.
See more...
