Rationale and impact
- Who should be offered rehabilitation?
- Overarching principles of rehabilitation
- Organising the rehabilitation pathway, and the lead commissioner
- Joint working
- Working with other healthcare providers
- Improving access to rehabilitation
- Delivering services within the rehabilitation pathway
- Recovery-orientated rehabilitation services
- Person-centred care planning through assessment and formulation
- Rehabilitation programmes and interventions
- Adjustments to mental health treatments in rehabilitation
- Physical healthcare
These sections briefly explain why the committee made the recommendations and how they might affect practice and services.
Low to very low quality evidence from randomised controlled trials of rehabilitation in the community and observational studies of inpatient rehabilitation showed that rehabilitation was effective and cost effective for many people with complex psychosis. Qualitative evidence also showed that people with severe mental illness value rehabilitation.
There was moderate quality evidence that people who experienced a shorter duration of illness before rehabilitation, and who had lower psychopathology scores, were more likely to progress through the rehabilitation pathway to greater independence. However, the committee thought that everyone with treatment-resistant symptoms and functional impairments had the potential to benefit from rehabilitation, and that this applied regardless of whether they were living in inpatient or community settings.
The committee also highlighted the groups of people who, in their experience, are likely to have treatment-resistant symptoms and functional impairments.
The committee was aware that some people leaving early intervention services have significant residual disability, with persisting symptoms and functional impairment. However, it was not possible from the evidence to determine whether providing very early access to rehabilitation to these people could prevent repeated admissions and problems in daily living. The committee therefore made a research recommendation on who should be offered rehabilitation.
Earlier access to rehabilitation should deliver more effective treatment sooner. This should reduce repeated admissions, enable earlier referral to less intensive (and cheaper) services and support more independent living. There may be some resource impact if more units are needed; however, most trusts in England have existing mental health rehabilitation units and half of trusts have community mental health rehabilitation teams who work with people after they have left hospital and moved to supported accommodation. In areas without these teams, community mental health teams already coordinate care. There will also be substantial savings from the repatriation of people placed out of area.
There was qualitative evidence on the approaches, care, support and treatment that are valued by people using rehabilitation. A recovery-orientated approach was reported to be particularly valued and there was evidence that services adopting this approach to a greater extent were more successful in supporting people to progress along the rehabilitation pathway. The committee used this evidence along with their clinical knowledge and experience to recommend overarching principles to guide the delivery of rehabilitation services.
Based on the evidence, the committee noted that not everyone with complex psychosis will get better. However, in their experience, rehabilitation can be beneficial for everyone who has treatment-resistant symptoms, even if they do not regain the same level of function and continue to need a high level of support in the longer term.
The committee agreed that the overarching principles will improve consistency of best practice and do not need any additional resources to deliver.
The evidence supported each locality having a defined rehabilitation pathway with access to a range of service components in different settings to provide the appropriate treatment and support that people need. The committee agreed that different levels of support, and usually both inpatient and community services, are needed to support people's full recovery. They noted it was important that these services were provided as locally as possible. The committee agreed that this would:
enable better integration between health and social care (because supported accommodation and housing are arranged at local authority level)
help to prevent inappropriate care, for example, people being unable to progress from inpatient units or out-of-area placements
provide options for appropriate aftercare for people who have been detained in hospital (a statutory obligation under the Mental Health Act 1983).
In the committee's view, the commissioning of rehabilitation services needs to take into account the mental health services that are already available and how services will work together to meet the population's needs. Currently, there is a lack of integration between services and a lack of clarity about who should be funding and commissioning them. The committee considered it essential that health and social care commissioners work together to commission services, to address people's overlapping health and social care needs. They acknowledged that to provide a full range of inpatient rehabilitation services, independent sector providers as well as those in the NHS may need to be involved.
Local authorities are required under the Health and Social Care Act (2012) to perform a joint strategic needs assessment to identify the health and social care needs of their population. The committee identified key groups that need to be included through a complementary local rehabilitation service needs assessment – people who are most likely to need local rehabilitation services, and those who might need highly specialist or longer-term rehabilitation services – to ensure services can be planned to help meet their needs.
The committee was aware that commissioning highly specialist services at the local level might not be feasible because there may not be enough people with very complex needs to warrant a dedicated unit. Therefore, they recommended local areas could work together to commission these services at a regional level.
The committee highlighted the need for flexibility within the rehabilitation pathway. People with complex psychosis do not always have a linear progression to recovery from needing high support to independence; some people may need continued support in the long term and some people may need more than 1 period of rehabilitation. It should be possible to accommodate this in the pathway.
Qualitative evidence showed that integration and collaborative working across teams and services was facilitated by a lead champion. This model of a lead commissioner is also recommended by NICE for people with learning disabilities and behaviour that challenges, who similarly have overlapping health and social care needs. Qualitative evidence, along with the experience of the committee, provided a number of attributes that would enable the lead commissioner to perform their role effectively.
These recommendations largely reflect current practice in terms of joint commissioning. However, greater emphasis on an integrated rehabilitation pathway will likely see fewer people being referred to out-of-area placements and discharged from inpatient rehabilitation to community rehabilitation settings at a faster rate.
Economic evidence from a wider NHS and Personal Social Perspective shows that there may be a large cost saving from faster discharge rates that are appropriate to a person's illness and reduce inappropriate out-of-area placements. However, there may be a high resource impact for local authorities who are responsible for commissioning the provision of housing for people discharged from inpatient units. To some degree, this resource impact felt by local authorities would be offset by faster transitions to supported housing and floating support.
Providing more local inpatient facilities could potentially increase capital costs for some commissioners in the short term if those facilities do not currently exist. In the longer term, this would involve replacing costs incurred out of area with those incurred locally, so the move to more locally available services is expected to be cost neutral over time. Overall, the health benefits of people spending more time in contact with community-based services, and less in inpatient facilities, would offset any initial additional resource impact.
An appropriately skilled lead commissioner would facilitate local authorities working together with health and social care commissioners, which is current practice in some areas.
The qualitative evidence identified barriers to integrating rehabilitation care pathways, which resonated with the committee's own experience. 'Siloes' of resources were discussed as a key barrier, and the committee noted that collaborations among services are hard to sustain unless they are underpinned by sufficient shared budgets. They also agreed that competitive funding among services is often not in the best interest of people in rehabilitation because it can discourage services from supporting a person to progress through the pathway. The committee agreed additional areas to highlight in the recommendation where the lead commissioner could help to address barriers to integration.
The committee agreed that because people with complex psychosis have a fluctuating illness, they need to be able to move seamlessly between services in the pathway depending on their needs. Based on consensus, the committee recommended measures to achieve this.
There was some qualitative evidence that some service users come to services passively because it is simply where they are 'sent to' next. Being able to visit a service before a placement begins helps people to make their own decisions and to feel more at ease about making the transition.
One study showed benefit of an integrated system to support transitions. The integrated system was a team of health and social care practitioners and informal carers for each person who met weekly to coordinate care, were able to communicate through a shared IT environment, and were trained to collaborate. Because the evidence was limited to 1 randomised controlled trial and there was no detail about what aspects of the intervention were effective, the committee could only recommend exploring ways to improve the sharing of information and IT systems.
To find out more about whether an integrated system involving a multidisciplinary team might help improve transitions and people's progress through the rehabilitation pathway towards greater independence, the committee also made a research recommendation on integrated care systems.
Developing an integrated approach to rehabilitation is likely to be costly initially. Resources would be needed to set up services and underpin the collaboration between them (for example, systems to coordinate and communicate between services). However, an integrated rehabilitation pathway is likely to be cost effective in the longer term. Additional costs would be offset by the economic and health benefits of successful transitions and people receiving the correct level of support.
Visiting rehabilitation settings is common in some areas, and should not involve a high resource impact, unless the person needs significant support to attend the visit.
The evidence showed that people with severe mental illness are at increased risk of many comorbid conditions and substance misuse. The committee considered it crucial that services for mental and physical healthcare, social care and substance misuse develop local protocols to ensure appropriate services are available to people in rehabilitation. Based on their knowledge and experience, the committee recommended what these protocols should cover.
In the committee's experience, some people using rehabilitation services may need to start or restart treatment with clozapine. This requires strict monitoring and currently many of these people are admitted to hospital. However, it is possible to provide clozapine in the community with the right level of monitoring through an extended-hours service. The committee agreed that making clozapine available in the community would prevent unnecessary hospital admissions and is an important part of a successful rehabilitation service.
Rehabilitation services should already be working with other providers to meet people's needs for physical healthcare and substance misuse services. However, if services and funding within an area are highly siloed, additional resources may be needed to enable this collaboration.
Although clozapine in the community is not available in all areas, most areas do have a team in place providing an extended-hours service for people with mental illness, for example a crisis resolution home treatment team. It may involve additional costs to fund the extra work for this team to provide clozapine at community level, but it could be balanced by cost savings resulting from better management of psychosis symptoms.
In the committee's experience, many potential users of rehabilitation services and their families and carers are unaware of what services are available and how to access them. This was also reflected in the qualitative evidence.
Qualitative evidence found that factors like age, sex, physical health problems, race and ethnicity were barriers to accessing rehabilitation for many people, because services are often unequipped to meet specific needs associated with these groups. The evidence also found no significant association between successful progress in rehabilitation services and age, gender or ethnicity. The Equality Act 2010 requires services to be accessible regardless of these protected characteristics and the committee agreed everyone with complex psychosis should have access to rehabilitation services. They therefore provided examples for how these inequalities in access could be addressed.
The committee recommended supporting people to access legal advice about their immigration status if required, in case people might be concerned about being deported if they access services.
The recommendations might have some resource impact, depending on how developed services are in this respect across different areas. For example, extra resources may be needed if outreach is needed to improve accessibility for minority groups. However, equal access and reasonable adjustments are requirements of the Equality Act 2010 and so should be standard practice and already considered in budgeting.
The recommendation to support people to access legal advice about their immigration status could require access to costly legal specialists; however, the committee noted this is currently being done in practice.
There was some evidence to support providing community rehabilitation through a multidisciplinary team and this was in line with the committee's experience. The committee also considered multidisciplinary working to be effective in inpatient rehabilitation services, so they recommended it for both inpatient and community settings. They used their own experience to recommend some of the core roles that would need to be included in the team. They also recommended other health professionals the team should have access to in order to meet the mental and physical healthcare needs of people with complex psychosis during rehabilitation. Input from welfare rights specialists was also thought to be important because people with complex psychosis will be on welfare benefits and are likely to need advice on their income. Speech and language therapist input would be needed to deal with the additional communication needs that can be experienced by this group. Physiotherapists would be needed to help people with mobility issues to engage in more physical activity to mitigate the physical health impact of a more sedentary lifestyle.
The evidence suggested that for every additional bed in an inpatient rehabilitation unit, there was an associated small decline in people's quality of care (as rated by Quality Indicator for Rehabilitative Care [QuIRC] on living environment, therapeutic environment, promotion of self-management and autonomy and promotion of social integration). The committee agreed this finding was also relevant to supported accommodation. The committee could not specify the optimal size of inpatient units or supported accommodation because no absolute optimal size was indicated in the evidence, and units of varying size may be appropriate for different areas.
There was evidence that the quality of rehabilitative care (as measured using QuIRC for inpatient units and QuIRC‑SA for supported accommodation) was associated with better outcomes of rehabilitation, autonomy, experience of care and satisfaction for people using the service. This evidence came from inpatient units, community units and supported accommodation. The committee agreed that measuring the quality of rehabilitative care using currently available tools would help rehabilitation units to identify areas for improvement and ultimately lead to better rehabilitation services. They also recommended services consider joining a peer accreditation or quality improvement forum because rehabilitation services often exist in isolation, so it is important for them to share good practice with other practitioners.
There was evidence that multidisciplinary community team management increased participation in activities of daily living. The committee used their experience to extrapolate from this to recommend how community mental health rehabilitation teams should provide care and work together to support people in community rehabilitation. However, they acknowledged that this team's remit may vary in different areas depending on how other community-based services are organised.
The committee noted from their experience in practice that issues with mental capacity can cause delays to people moving to supported accommodation. They highlighted the need for staff to follow the Mental Capacity Act 2005 so that people can progress through the rehabilitation pathway.
The committee used qualitative evidence to highlight features of supported accommodation that are valued by people, The committee discussed the importance of supporting people to have autonomy, including to make potentially risky decisions, while still maintaining reasonable safety and helping people to avoid exploitation. The committee believed that in the long term, these recommendations would allow service users to live more sustainably and independently in the community, with fewer stressors and mental health relapses that lead to hospitalisation.
Evidence showed that rehabilitation units with an expected maximum length of stay were associated with better quality of care. The committee agreed that having an expected maximum length of stay could help prevent delays when people are ready to move on through the rehabilitation pathway. However, they also agreed this should not be treated as absolute; services need to be flexible and provide appropriate treatment and support tailored to each person's needs.
The committee noted that accepting a placement in inpatient rehabilitation could affect people's eligibility to receive particular benefits (for example housing benefit) and could affect people's existing tenancies with local authorities. The committee wanted providers to be aware of and advise people about these issues.
There was a lack of evidence about the characteristics of effective highly specialist or longer-term high-dependency inpatient services. People with particularly complex comorbid conditions whose care cannot be managed in less specialised settings often spend very long periods of time (sometimes many years) in highly specialist or longer-term inpatient rehabilitation services. The Care Quality Commission has raised concerns about quality of life for people in this group. It is important to understand the characteristics of services and service users that support successful progress through rehabilitation, so the committee made a research recommendation on highly specialist and longer-term high-dependency rehabilitation units.
Health economic modelling showed that providing rehabilitation locally was less costly than using out-of-area placements, which are often provided by the independent sector. Although no clinical outcomes were found in the accompanying systematic review, the model included data from the Care Quality Commission, which showed that people placed in out-of-area inpatient wards have a longer average stay on such wards than those placed in local wards. There is a large hypothetical overall cost saving from a wider NHS and Personal Social Services perspective which, in the model, is driven by a reduction in the rate of out-of-area placements and faster discharge rates to supported accommodation that enable more independent living.
The committee acknowledged that there were no relevant clinical outcomes or utility data to compute quality-adjusted life years, although it was their view that a person in supported accommodation would typically have improved activities of daily living. Reducing out-of-area placements would therefore lead to more people being appropriately discharged to supported accommodation, which would reduce costs and improve quality of life.
The committee was aware of evidence suggesting that for many people in out-of-area placements, it could be appropriate to offer rehabilitation in local inpatient units. Being in a local unit also makes it easier for people to maintain contact with their families, communities and local support networks or activities, such as peer support groups.
The committee shared anecdotal reports of people being in out-of-area placements for many years, without clinical oversight from the person's local area. To avoid this, they made recommendations with the aim of reducing out-of-area placements wherever possible, providing better support while people are in these placements and bringing them back to their local area as soon as possible. This included recommending time frames for reviewing out-of-area placements, which were based on committee consensus.
There was a lack of comparative evidence between services provided by the independent sector and the NHS. The committee acknowledged that the independent sector is an important provider of rehabilitation services; however, the services they provide are often a long way from where people live, and from the local area that funds their placement. Many independent units are locked, and lengths of stay are considerably longer (and therefore costlier) than in equivalent NHS services. There is little systematic and reliable evidence on the characteristics of users of these services or the effectiveness of these units, to establish if the longer stays are necessary. Given the potential for significant cost savings if the effectiveness in the 2 sectors were found to be the same, the committee made a research recommendation on inpatient rehabilitation provided by the independent sector.
The recommendation for the multidisciplinary team to have access to additional healthcare professionals may have a resource impact for those teams without this access currently. However, because some teams already have access to these specialties, the committee did not think this would be a significant resource impact.
Not all supported accommodation services currently use the QuIRC‑SA so the recommendation may lead to a moderate change in practice. This tool is web-based, free to use and completed annually by a unit manager or senior staff member in around 90 minutes. Further investment may be needed to address gaps identified by these quality measures. However, the committee considered this would be justified by improved experience of care and better rehabilitation outcomes for service users.
The recommendation to advise people about the impact of rehabilitation placements on their tenancies could require access to welfare rights specialists, which could have a resource impact for services without this access currently.
The committee recognised that local authorities in some regions may need to invest significantly in the quality and variety of their supported accommodation to implement the recommendations on supported accommodation. However, the recommendations do recognise that commissioning decisions should be based on a local rehabilitation service needs assessment to reflect the needs of the local population. Nevertheless, local authorities often commission supported accommodation and therefore can specify quality metrics when tendering to providers.
There is likely to be some service reconfiguration required by the recommendations on out-of-area placements as people move back to local units. New rehabilitation units may need to be commissioned locally and there could be a substantial initial investment. However, in the long term, this would be expected to be largely cost neutral with respect to capital costs, as out-of-area facilities are replaced by local ones. Therefore, the committee argued that this 'investment' is currently already being spent on out-of-area placements so would not constitute additional funding in the long term. The committee did note though that any investment should be based on a local rehabilitation service needs assessment based on the needs of the local population.
The recommendation for a designated care manager may represent a change in practice in some areas. For areas that do not currently perform regular clinical review of people being sent out of area, this could represent an additional resource. However, if the review leads to people being brought back within area to a more cost-effective placement, this resource could be offset.
Qualitative evidence showed that service users value a recovery-orientated approach to their care. This means helping people to work towards their aspirations and make the most of their abilities, while giving them support and encouragement wherever needed. The evidence suggested several key areas including activities of daily living, hobbies and interests, and vocational goals, where service users believed that services could help them work towards recovery.
Working collaboratively with people with complex psychosis to produce a care plan can be challenging because of diminished communication and mental capacity. Despite these challenges, planning care in collaboration with the service user is expected practice in UK mental health services. Guidance on mental capacity and communication needs is already provided in other NICE guidelines but the committee also agreed it was relevant to highlight the legal obligation to offer independent advocacy under the Care Act 2014 and to follow the NHS Accessible Information Standard when working with people in rehabilitation.
The committee considered staff training in recovery orientation to be essential to deliver an effective rehabilitation service. They also agreed that staff need to develop collaborative and non-judgemental relationships with people using the service. There was qualitative evidence that staff sometimes lack optimism or are overly risk-averse about the prospect of rehabilitation for some people, which can negatively affect a person's recovery. To address this, the committee recommended ways to encourage positive attitude changes to help staff retain hope and optimism, while acknowledging that not everyone will achieve full independence.
Qualitative evidence was supported by the committee's experience that service users from minority groups may experience language barriers and unconscious prejudice because of their minority status as well as because of their mental illness. This combination may produce its own unique barriers within services and the committee agreed staff should be aware of this.
The committee made the recommendation on supporting structured activities based on limited evidence combined with consensus. They saw structured group activities as a key aspect of rehabilitation (see recommendation 1.8.4) and agreed that all staff, not just certain staff such as occupational therapists, should be able to support these activities.
The committee also discussed safeguarding and risk, and agreed that all staff need to be trained to deal with risks relevant to the setting they are working in.
There is a high prevalence of substance misuse among the rehabilitation population. The committee thought it was essential that all staff are able to identify these problems and provide the right support.
The recommendations on staff competencies may have a resource impact in services that do not currently provide training. However, any additional resources may be offset by the benefits to service users of establishing a recovery-orientated rehabilitation service. Helping people with complex psychosis to engage with their family members or carers may be more resource-intensive than for people with less severe disease, because of the functional and communication problems people with complex psychosis may face. But these recommendations are derived from other NICE guidance so should reflect current practice.
The committee used evidence about rates of physical and mental health conditions and substance misuse in this population to recommend what to consider as part of the initial assessment when people enter the rehabilitation service. The committee also drew on their experience to provide details about what a structured comprehensive biopsychosocial needs assessment should cover to assess people's complex needs and comorbidities.
The committee agreed that baseline investigations before starting antipsychotic medicines recommended in the NICE guidelines on psychosis and schizophrenia in adults and bipolar disorder should form the core of the initial physical health check for people in rehabilitation services because most would be receiving antipsychotic medicines.
The committee also drew on the evidence identifying the most common physical and mental health comorbidities to highlight conditions that staff need to be alert for because these may contribute to higher mortality or complexity in rehabilitation in this population. The committee also agreed that more understanding is needed about the likely impact of physical comorbidities on mortality among people with complex psychosis, so they made a research recommendation on coexisting physical health conditions.
The committee agreed that the comorbid health conditions and other needs identified in the needs assessment could be used along with people's recovery goals to contribute to a healthcare plan that would reduce morbidity and mortality, and improve people's function and quality of life.
Quantitative evidence suggested that detailed and regularly updated care plans lead to better service user outcomes, especially when developed within a multidisciplinary team. The committee used this evidence, their own experience and other NICE guidelines to make further recommendations on good care planning. They decided that monthly reviews in inpatient rehabilitation, and 6-monthly reviews for people in community rehabilitation, would keep care plans relevant without being overly invasive.
An initial needs assessment is already standard practice, but changes might be needed to align with recommendations on what the assessment should include. Physical health checks should also be standard practice, but the committee noted that monitoring and treatment of coexisting health problems was variable in this population so the recommendations should improve consistency of practice.
The recommendations on care planning should not have substantial resource implications. In some areas, additional staffing and training might be needed to enable more regular and thorough review, but in the long term these costs will be offset by more effective treatment, improved recovery and a reduced need for crisis teams, hospital beds and other services.
Based on evidence suggesting that interventions could improve daily living skills and, given the importance of these skills in recovery and quality of life, the committee recommended promoting interventions to improve these activities as highly as other types of interventions. In the committee's experience, this does not always happen in practice.
Based on their experience, the committee agreed that individualised support could improve daily living skills, for example by choosing activities that people enjoy and that motivate them. If a person is motivated, they might be more likely to engage in activities of daily living such as personal care or going out on public transport. Having access to areas such as kitchens and laundry was also agreed to be important so that people can practise their skills.
Engagement in community activities, including leisure, education and work (recommendations 1.8.7 to 1.8.14)
The committee wanted to emphasise the importance of meaningful occupation and work in promoting recovery and helping to promote community inclusion, based on their own experience and the preferences expressed in the qualitative evidence. The committee highlighted a number of aims of community activities, and recommended a range of hobbies and leisure activities, as well as skill development opportunities.
Evidence from randomised controlled trials showed that Individual Placement and Support (IPS) increases engagement in employment for those interested in work, and this was supported by cost-effectiveness evidence from a health economic model. There was also evidence that adding cognitive remediation can increase the effectiveness of vocational rehabilitation. The committee recommended considering both of these interventions. They agreed, however, that some people may not be ready for mainstream employment and would benefit from alternatives to IPS such as transitional employment schemes.
The committee also discussed the role of partnerships with other organisations such as voluntary organisations and employment advice schemes. They agreed these could be an important route to engagement with employment or education.
The committee discussed peer-support interventions for engaging in community activities. Although these were widely valued by the committee, there was no directly relevant research to guide the development of peer support for community activities in complex psychosis and rehabilitation services. The committee therefore made a research recommendation on peer-support interventions.
The committee also discussed staff training interventions to mediate improvements in daily living skills, interpersonal skills and engagement in community activities, which are key areas of personal recovery in rehabilitation. However, no trials were found that assessed these interventions, so they made a research recommendation on staff training interventions.
There is a high prevalence of alcohol and substance misuse among the rehabilitation population. Because of limited evidence, the committee made recommendations based mainly on consensus and existing NICE guidance. They wanted to prevent a situation where substance misuse was occurring but rehabilitation staff viewed it as being outside their remit. The committee agreed that questions about substance use should be routine when people enter the rehabilitation service and that rehabilitation staff needed to know what their role should be in supporting people and providing substance misuse interventions.
The committee noted that providing access to real-life settings for people to practise their daily living skills might be challenging in some services, because of the range of people's needs and risks within the service.
Structured group activities such as playing board games and watching DVDs do not have a high resource impact, but activities outside the rehabilitation setting could be more costly depending on the support needs of the group. Providing a named person to support engagement is unlikely to have significant resource impact, because an existing key worker or support worker might take on this role if it is not being done already, and no external provision would be needed.
The committee agreed that relatively few people with complex psychosis in rehabilitation services are ready to engage in paid employment so the recommendations for individual placement and support would have little impact on current IPS services. Cognitive remediation is not routinely added to vocational rehabilitation and this could lead to a change in practice in for some centres.
The recommendations call for greater awareness among rehabilitation staff about identifying and managing substance misuse, which could be incorporated into general training for all staff.
The committee focused this section on people with symptoms of psychosis that are resistant to standard treatment because this population represents people using rehabilitation services. The committee recommended adjustments to standard treatments for psychosis described in other NICE guidance.
The evidence showed there were benefits and harms to each treatment option, so the committee agreed that treatments should always be discussed with the person. They were also aware that comorbidities, including other mental health conditions and autism spectrum disorder, can affect outcomes in people with complex psychosis. These comorbidities need to be identified and treated in line with NICE guidance.
There was some evidence from randomised controlled trials that for people with treatment-resistant psychosis, cognitive behavioural therapy (CBT) decreased positive psychosis symptoms compared with pharmacological therapy alone. Based on this evidence and their experience that people with complex psychosis are often too unwell to engage with CBT at earlier contacts with the rehabilitation service, the committee recommended that it should be continued in this treatment-resistant population.
In the committee's experience, some people in rehabilitation are not ready to engage with CBT. The committee discussed the importance of providing additional psychological interventions but could not recommend a specific intervention because of the lack of evidence. Instead they recommended interventions to consider and emphasised that these should be based on psychological assessment, formulation and consideration of each person's preferences.
The committee also wanted to acknowledge the importance of low-intensity psychological interventions. Despite the lack of evidence from trials, the committee decided that the option of providing all staff with skills in delivering these interventions should be considered in rehabilitation settings.
There was some evidence from randomised controlled trials supporting augmentation with the agents in recommendation 1.9.9 for reducing psychosis symptoms in people with schizophrenia refractory to clozapine. The evidence was limited by small sample sizes and information on adverse events was very sparse. However, given the lack of treatment options, and considering that current prescribing for this population is inconsistent, the committee decided that augmentation should be considered an option.
In general, the committee recommended classes of drug rather than individual drugs, but they specifically mentioned aripiprazole as an example when recommending augmentation with antipsychotics. The committee noted that amisulpride is more commonly prescribed than aripiprazole, but the evidence did not show a change in psychosis symptoms following amisulpride, while there was some evidence on the effectiveness of aripiprazole in reducing total psychosis symptoms. Although the evidence also showed that ziprasidone decreased psychosis symptoms, this drug is not licensed or available in the UK.
Given the safety profiles of these drugs and their potential interactions when combined, the committee recommended seeking advice from a psychiatrist specialising in treatment resistance or a specialist mental health pharmacist if needed.
The committee made recommendations on dosing and interactions with other substances based on their experience and knowledge about the safety of various therapeutic options. They recommended therapeutic plasma levels because this may be useful in checking non-adherence or to confirm toxicity or pharmacokinetic drug interactions.
The committee agreed it was important to measure drug levels regularly to assess adherence and guide dosing. There was a lack of evidence on how frequently this should be done, so the committee used their own knowledge and experience, as well as drawing on NICE's guideline on bipolar disorder for monitoring of people taking lithium.
The committee also agreed it was important to monitor the effects of specific medicines. However, again there was no evidence on how frequently to do this. Some antipsychotics increase prolactin, raising the risk of hyperprolactinaemia, and the committee discussed whether prolactin should be measured: before starting treatment with a drug that raises prolactin (as is common practice, and recommended in NICE's guideline on psychosis and schizophrenia in adults); only if a person has symptoms for hyperprolactinaemia; or at regular intervals. The consensus was to consider monitoring prolactin annually and more regularly if the person is symptomatic.
The committee also wanted to highlight the importance of electrocardiogram (ECG) monitoring. Antipsychotic medicines can cause cardiac abnormalities, for example lengthened QT interval on electrocardiography. Although the NICE guidelines on psychosis and schizophrenia in adults and bipolar disorder recommend ECGs only when starting antipsychotic medicines, the committee recommended considering ECGs annually (and more frequently for people with complex antipsychotic regimens or doses above BNF levels). They agreed this consideration was warranted for this population, many of whom have been on medicines long term, or combinations of medicines that may alter cardiac rhythm, or both. It is already common practice to perform ECGs if exceeding BNF limits for antipsychotics.
Adherence to medicines and helping people to manage their own medicines (recommendations 1.9.20 to 1.9.22)
Evidence showed that medicines adherence was associated with successful progression in the rehabilitation pathway to more independent living. However, there was no evidence on specific interventions to improve adherence in people using rehabilitation services. The committee noted that people with a severe mental illness may find polypharmacy and complex regimens difficult to manage and so recommended avoiding these if possible.
Acknowledging the importance of self-management of medicines in people's recovery, the committee recommended opportunities to do this for those assessed as able to take part. Because of the lack of evidence on specific interventions to improve medicines adherence, they also made a research recommendation on medicine adherence for people in supported accommodation. They agreed that people in supported accommodation are likely to receive less support with taking medication than those in inpatient rehabilitation.
The committee noted that having psychological and pharmacological interventions specifically for people in rehabilitation, could improve their ability to live in the community. However, the existing evidence was not specific to rehabilitation settings and did not include all relevant outcomes, so the committee made a research recommendation on tailored interventions.
The recommendations on psychological therapy reflect current practice and should not involve additional resources.
The recommendations on pharmacological treatments will help to standardise practice across the NHS. They may lead to an increase in the prescription of aripiprazole as augmentation therapy, but this will not have a resource impact because the associated resource use and unit costs are marginally less costly than amisulpride.
The recommendation on increased monitoring of prolactin levels follows current practice.
There may be some resource impact from an increase in ECG monitoring, though the committee noted the Maudsley Prescribing Guidelines suggest that an ECG should be offered at least annually. Therefore, any resource impact would likely be small.
The overall impact of avoiding complex medical regimens and polypharmacy could be cost saving if adherence is improved and could lead to more successful progression through the rehabilitation pathway.
In the committee's experience, access to physical healthcare services is variable depending on the rehabilitation setting and they agreed it was crucial that people did not miss out on monitoring or treatment of their physical health. So the committee outlined the role that inpatient rehabilitation teams should play in physical healthcare, and also adapted existing recommendations on GP responsibilities (recommendations 1.10.1 and 1.10.2) from the NICE guideline on psychosis and schizophrenia in adults. These adapted recommendations were consistent with the evidence about physical comorbidities that the committee looked at.
Combining the limited evidence with their experiences of health promotion in rehabilitation services, the committee agreed that a single professional should coordinate people's physical healthcare. The committee did not specify the role of the professional (for example, a doctor, nurse, healthcare assistant or care coordinator) but the key point was to have a named person to maintain continuity.
The committee recommended the items that should be considered in physical healthcare plans based on their experience, and the evidence on comorbidities in people with severe mental illness.
The committee agreed that smoking was one of the most important modifiable risk factors in this population. They noted that people with complex psychosis using rehabilitation services may find accessing standard smoking cessation programmes difficult. Given the lack of evidence for a specific intervention in rehabilitation, and the need to be mindful of potential drug interactions, the committee agreed that the smoking cessation guidance in the NICE guideline on psychosis and schizophrenia in adults was applicable to the rehabilitation population.
Adverse lifestyle factors may be more prevalent in people with complex psychosis, for example they may be less physically active, which could place them at a higher risk of physical health problems such as obesity, cardiovascular disease, metabolic syndrome and diabetes. They therefore agreed that recommendation 188.8.131.52 about a combined healthy eating and physical activity programme from the NICE guideline on psychosis and schizophrenia in adults was also relevant to include for this population and was broadly supported by the evidence they looked at.
Given that adverse lifestyle factors may be more prevalent in people with complex psychosis, the committee made the recommendation about providing information on physical health risks based on both their knowledge and experience and evidence of the prevalence of comorbidities. The committee also noted that people with complex psychosis may have difficulty maintaining oral hygiene due to poor self‑care and may be at higher risk of substance misuse and sexual and reproductive health problems.
The committee also discussed the importance of good sleep for overall physical health and recovery. Although there was no evidence of specific interventions to improve sleep in the evidence or other NICE guidance, the committee agreed it would be good practice to provide advice and support for maintaining sleep hygiene, and practitioners should avoid environmental barriers that may hinder sleep.
The committee recommended an annual physical health check for people in rehabilitation services based on the physical health checks in NICE's guidelines on psychosis and schizophrenia in adults and bipolar disorder. They added assessments of sexual health, vision, hearing and podiatry, substance use and thyroid function. These additions were based on both their clinical experience and the evidence on comorbidities.
To increase uptake of this health check, the committee agreed it could be done either at the rehabilitation service by a nominated professional, or at the person's GP practice. Adapting recommendations from NICE's guideline on psychosis and schizophrenia in adults, the committee recommended discussing the results of the physical health check with the person and relevant practitioners.
The committee agreed that risk factors and physical or mental health conditions identified during the initial health check should be managed according to existing NICE guidance. For the treatment recommendation, the committee listed the same conditions as NICE's guideline on psychosis and schizophrenia but added chronic obstructive pulmonary disease (COPD) because of the high proportion of COPD in the population.
The recommendation to be alert to possible blood-borne diseases was based on evidence about the relatively high prevalence of hepatitis and HIV in people with severe mental illness. The committee agreed this may be related to homelessness, intravenous drug use or a history of sexually transmitted disease. They also agreed that more understanding is needed about the risks predicting blood-borne virus infection in this population so that strategies can be developed to address these, so they made a research recommendation on the risk of blood-borne virus infections.
Limited evidence showed that it could be cost effective for physical healthcare to be coordinated by a nominated professional.
If the recommendations on physical health checks result in more people having these checks, there may be a resource impact. However, these costs may be offset in the longer term by the prevention of morbidity and future illness. Although the health checks are within existing NICE guidance and so should be common practice, the National Cardiac Audit Programme 2017 audit found that most people had not been assessed for all 5 cardiovascular health risk factors in the last year.
Treatment of physical health conditions according to NICE guidance should be current practice; however, the National Cardiac Audit Programme 2017 audit found many people with identified risk factors had not received appropriate interventions.