Rehabilitation for chronic neurological disorders including acquired brain injury

Why the committee made the recommendations

Evidence showed that holistic rehabilitation requires collaboration between different organisations and services. The committee agreed that services should be wide-ranging and designed with users and health, mental health and social care practitioners in mind.

Evidence showed that many people with a chronic neurological disorder do not feel empowered to offer feedback about their service experiences. The committee agreed that this could be addressed by encouraging people to share their experiences and using this feedback to inform and improve service design.

Evidence found that rehabilitation is often only considered when symptoms start to affect functioning and only provided in the short term for specific symptoms. This is despite people with a chronic neurological disorder saying they needed long-term follow-up or regular reviews. The committee agreed that designing services with lifelong care and support in mind, from initial symptom presentation or diagnosis, will enable more timely access to services as future needs will be better anticipated.

Evidence highlighted that a comprehensive model of rehabilitation should encompass health, mental health and social care and the voluntary, community and social enterprise (VCSE) sector. The committee recommended that services operate across all health, mental health and social care settings, including both specialist neurorehabilitation and general rehabilitation services.

Evidence showed that people with a chronic neurological disorder tend to need periods of intensive treatment followed by periods of less intensive support. Furthermore, people reported finding it helpful when rehabilitation could be undertaken at home or in the community as well as clinical settings.

The committee agreed it was important that there were clear lines of responsibility for coordination of clinical pathways in each geographical area and an accountable lead for both children's and adults' service provision.

How the recommendations might affect practice

Some rehabilitation services already gather feedback from people with a chronic neurological disorder to improve service design and clinical pathways. These initiatives are generally low cost, often using electronic questionnaires.

Designing rehabilitation services with flexible, integrated clinical pathways across different providers, and with lifelong support and care in mind, may require additional resources and put pressure on existing services. However, the need for extra resources may be partially offset by using existing resources more efficiently and effectively. Implementing the recommendations may enable timelier access to assessment and care, which may reduce reliance on expensive crisis care, potentially offsetting some of the additional costs.

Return to recommendations

Why the committee made the recommendations

The committee acknowledged that navigating rehabilitation services can be challenging. They recommended a model of care whereby everyone with a chronic neurological disorder is assigned a key contact, key worker or complex case manager depending on the complexity of their needs. This would improve outcomes by ensuring timely access to appropriate care.

Evidence showed that commissioners should focus on a holistic approach to rehabilitation. The committee set out the minimum service specification required to do this.

How the recommendations might affect practice

The roles of key contact and key worker could be undertaken by existing practitioners, avoiding the need to create new roles. However, there is a lack of complex case managers and providing these roles, even for the minority of people with the most complex needs, is likely to require significant resources.

The services listed in the minimum service specification already exist, but availability varies across the country. Additional resources may be needed to establish services where they do not exist. Many services currently operate in isolation, so integrating these may require additional resources.

Implementing the recommendations may enable timelier access to assessment and care, which may reduce reliance on crisis care, potentially offsetting any additional costs.

Return to recommendations

Why the committee made the recommendations

Evidence highlighted that poor communication between rehabilitation services leads to poor continuity of care, particularly when someone is moving between services. The committee agreed that collaboration between services should start with commissioning bodies from different sectors making decisions together.

The committee recognised that practitioners delivering mental health services have varying degrees of experience of working with people with a chronic neurological disorder. Mental health interventions often need adapting for these groups of people.

Local service level agreements should aim to increase the availability of mental health practitioners who are trained to work with people with a chronic neurological disorder.

The committee agreed that is also important for neurorehabilitation and mental health service providers to build expertise and capacity in the workforce to better serve people with a chronic neurological disorder. This should be done by developing workforce skills. They also flagged the importance of developing protocols to improve communication between services involved in rehabilitation, including mental health services.

Evidence showed that increasing levels of knowledge of chronic neurological disorders within primary care settings can help improve identification of rehabilitation needs and increase necessary referrals. It also showed that healthcare practitioners often focus on physical and visible symptoms, and some have prejudged ideas about how certain disorders and injuries will respond to rehabilitation treatments. This can be a barrier to some people accessing an appropriate rehabilitation service and can result in health inequalities.

Evidence showed that the expense of procuring treatments was a common barrier to provision. The committee noted that although assistance is available to providers for some of the more costly treatments or services, these are often not publicised or widely known about. They agreed that rehabilitation practitioners need to know how to commission high-cost equipment and services.

Evidence showed that often people could not access appropriate rehabilitation services because specialist centres and services were limited. Furthermore, it found that increasing access to specialist knowledge and skills led to provision of a wider variety of rehabilitation services. And increasing the capacity of rehabilitation services improved both identification of rehabilitation needs and access to appropriate services. The committee noted the resource impact of increasing the numbers of specialist centres and so focused instead on increasing access to specialist knowledge within existing services.

Evidence showed that people had different preferences about group settings for facilitating social participation and, while some people like group settings, others do not. The committee discussed a wide range of factors that should be considered in order to increase engagement with group activities.

How the recommendations might affect practice

Greater collaboration between commissioning bodies may involve increased information sharing, joint working, and service level agreements. Establishing frameworks to support this may have some resource implications, but these are unlikely to be significant.

There is a shortage of appropriately skilled staff within neurorehabilitation services. There is also a lack of mental health services for people with a chronic neurological disorder, and general mental health services are currently not well-equipped to meet this need. Funding for staff training and additional staff may be required.

More resources may be needed to ensure GPs and other primary care practitioners can support people with a chronic neurological disorder. Sharing expertise from specialist centres and keeping up-to-date information on local services could achieve this without formal training. This approach is already in place in some areas and is not expected to require significant additional resources.

The NHS already funds high-cost specialist equipment and services. However, provision is limited, with long waiting times. Raising awareness among health and social care practitioners about how to commission such equipment and services could improve access and increase demand. Since funding is already available and not everyone will require high-cost specialist equipment, the additional resources are unlikely to be significant.

There is variation in the availability of social and leisure group activities for people with a chronic neurological disorder. Additional resources may be needed to establish these where they do not exist, but use of online options could mitigate the potential resource impact.

Return to recommendations

Why the committee made the recommendations

Evidence showed that poor coordination of rehabilitation services for people with a chronic neurological disorder, particularly when moving between services, prevented continuity of care and sometimes led to poor physical and cognitive functioning. The committee recognised that poor coordination of services is often due to a lack of communication and collaboration between services, including those operating outside the NHS.

Evidence showed that people with a chronic neurological disorder preferred, and benefited from, ongoing access but low intensity contact with rehabilitation services even when their needs were well managed. They also appreciated clear methods for self-referral and the ability to request a review of their needs. The committee agreed that a simple, reliable process should be in place for people to re-access services, aiding timely intervention and reducing the chances of further functional deterioration.

Evidence showed that poor communication and coordination across rehabilitation services often meant information about rehabilitation needs was not shared appropriately. The committee agreed that findings from assessments should be shared wherever possible.

The committee also recognised that providing responsive services may mean that certain services face short-term, above-average demand. This potential need for increased capacity and expertise should be taken into account when planning resources.

How the recommendations might affect practice

Most rehabilitation services collaborate to address the needs of people with a chronic neurological disorder, but practices vary. Greater collaboration may involve increased information sharing, joint working and service level agreements. Establishing frameworks to support these may have some resource implications, but these are unlikely to be significant.

Although referral procedures are in place to enable access to rehabilitation services, delays can occur because of capacity issues, time taken to assess needs or lack of awareness of available services among practitioners. Ensuring ongoing access, re-access and self-referral could increase pressure on existing services. However, it will enable timelier access to assessment and care, which may reduce reliance on crisis care, potentially offsetting any additional costs. It may also reduce the number of people contacting their GPs in order to access care.

Return to recommendations

Why the committee made the recommendations

Evidence showed that early identification of rehabilitation needs led to timely referral, enabling access to interventions or planning for future care.

Discussions about prognoses soon after diagnosis or injury was found to support people in monitoring and planning for their rehabilitation needs. The committee acknowledged that not everyone may be ready for these conversations. If this is the case, the person's preferences should be respected, with ongoing opportunities for discussion offered as needed.

Evidence showed the importance of a single contact point for rehabilitation. The committee agreed that the responsible clinician should give the person and their GP a contact for rehabilitation at the earliest opportunity, even before rehabilitation is due to start, to ensure continuity of communication.

How the recommendations might affect practice

Starting assessments for rehabilitation before a diagnosis is confirmed may increase demand for initial assessments and put pressure on existing services. However, an early needs assessment is crucial as some diagnoses can take years to establish.

Some people are given an initial contact for rehabilitation at an early stage, such as a responsible clinician or a link to a rehabilitation unit or team, but practices vary. Consistently implementing this may require additional resources, mainly more staff time.

Implementing the recommendations may enable timelier access to assessment and care, which may reduce reliance on crisis care, potentially offsetting any additional costs.

Return to recommendations

Why the committee made the recommendations

Evidence showed that people with a chronic neurological disorder need to be given a contact for rehabilitation when they are discharged from hospital. The committee agreed that an initial contact for rehabilitation is needed even before rehabilitation begins because rehabilitation can be anticipated as a requirement for long-term conditions at some point in the future. This should be communicated to the person's GP to ensure continuity of information.

When rehabilitation assessment or treatment has begun prior to discharge, a member of the inpatient multidisciplinary team might be the rehabilitation contact during the hospital stay. However, during the discharge process, it is important to agree who is best placed to take on this role after discharge.

Evidence showed that poor coordination during discharge led to delays and unmet needs at home. The committee agreed that delays in arranging equipment, assistive technology and environmental adaptations often extend inpatient stays unnecessarily.

How the recommendations might affect practice

It is usual practice for someone to have a hospital-based clinical contact at discharge or immediately following discharge for follow-up.

Using existing roles to act as the initial contact for rehabilitation avoids the need for creating new roles. This has the potential to increase the workload for the person involved. However, it may enable timelier access to assessment and care, which may reduce reliance on crisis care, potentially offsetting any additional costs.

The NHS already provides pathways and funding for equipment, assistive technology and environmental adaptations. However, staff shortages often delay assessments and subsequent adaptations. Therefore, more staff may be needed. Since funding is already available for equipment, increasing staff capacity may enable earlier access to essential support and avoid costly discharge delays, potentially offsetting any additional costs.

Return to recommendations

Why the committee made the recommendations

Evidence showed that starting holistic rehabilitation needs assessment as soon as a chronic neurological disorder is diagnosed or suspected enables timely access to interventions and may slow symptom progression.

The committee agreed that a brief, informal assessment should be undertaken to decide if holistic needs assessment is needed.

The committee noted that people with a chronic neurological disorder often experience long periods of stability and rehabilitation assessments may not be needed at every appointment. However, people should be told how to request an assessment if their needs change, for example because of worsening symptoms or altered circumstances.

Follow-up appointments should be organised to check symptoms and level of functioning in areas that are less easy for people to notice themselves, or for people who cannot initiate their own review.

How the recommendations might affect practice

Starting assessments for rehabilitation before a diagnosis is confirmed may increase demand for initial assessments and put pressure on existing services. However, early needs assessment is crucial as some diagnoses can take years to establish. It may enable timelier access to assessment and care, which may reduce reliance on crisis care, potentially offsetting any additional costs.

Return to recommendations

Why the committee made the recommendations

How the recommendations might affect practice

Capacity may need to increase to meet demand for holistic rehabilitation needs assessment as the default process. More resources may be needed to ensure staff are skilled to undertake assessments. Additional resources may be required for managing referrals, scheduling and IT systems for communication across health and social care providers in relation to assessments.

Additional staff time may be needed for conducting initial assessments and reviewing needs. However, it may enable timelier access to assessment and care, which may reduce reliance on crisis care and paid carers, potentially offsetting any additional costs. It may also increase the chances of people returning to work or participating in vocational or social activities, thus offering broader social and economic benefits.

Needs assessments for people with a poor prognosis may result in interventions to optimise or maintain functioning, potentially reducing the need for paid carers, positively impacting mental health and emotional wellbeing, and reducing related NHS costs.

The NHS already provides pathways and funding for services like NHS continuing healthcare, and education, health, and care plans (EHCPs) are arranged by local authorities.

Return to recommendations

Why the committee made the recommendations

Evidence highlighted the need for rehabilitation practitioners to provide information on the purpose and process of goal setting in rehabilitation. This improves people's engagement with goal setting.

People with a chronic neurological disorder were also found to be less motivated when goals were perceived as too difficult or unrealistic. Therefore, long-term goals should be broken into smaller, short-term steps. This helps people see how their goals and treatment relate to their long-term recovery or management of their condition.

Evidence showed that children with communication difficulties had problems participating in goal setting. This resulted in parents delaying their child's involvement in goal setting until they were older. Using age-specific approaches to goal setting, such as simplified language, helps involve children and young people in a more meaningful way.

Goal setting was found to be more realistic when there were honest discussions about the potential for goals not to be achieved. The committee acknowledged that honesty fosters trust and rapport but should be balanced with maintaining motivation.

Evidence indicated that healthcare practitioners require time during consultations to set goals and make rehabilitation plans for people with a chronic neurological disorder. Time is needed to build rapport with the person and their family, support them through emotional distress and enable full engagement in rehabilitation planning.

The need to review goals was found to evolve over time, with frequent reviews and a focus on physical rehabilitation early on, followed by a shift towards less frequent reviews and a focus on longer-term, psychological goals later on.

Evidence highlighted that engagement during goal setting and rehabilitation planning varied widely for children and young people with a chronic neurological disorder and was better when goals were relevant. Regular reviews of goals and plans will keep them in line with the child's or young person's growth and developmental stage. The committee agreed that regular reviews of goals and plans was beneficial to adults too.

How the recommendations might affect practice

The recommendations on goal setting outline good practice. More resources may be needed to implement these where current practices are sub-optimal. For example, more practitioner time may be required to ensure effective goal setting.

Inadequate goal setting may lead to inappropriate or low-priority interventions, negatively impacting engagement with rehabilitation and causing deterioration. This may increase the need for expensive interventions, crisis care and paid carers, potentially incurring substantial costs to the NHS.

Return to recommendations

Why the committee made the recommendations

Evidence showed that collaboration between health, mental health and social care practitioners helped to facilitate holistic rehabilitation needs assessments. It also highlighted that rehabilitation planning and delivery should involve family members or other people important to the person to achieve the best possible outcomes.

Evidence showed that rehabilitation planning should be tailored to the person, and that people with a chronic neurological disorder were unhappy with generic rehabilitation packages. The committee agreed that the plan should include any modifications to interventions.

People with a chronic neurological disorder were found to be dissatisfied with the short timeframe of rehabilitation designed to address specific symptoms or impairments. People with mild or moderate symptoms often had to wait for symptoms to progress before being offered rehabilitation. The committee noted that people can feel overwhelmed if a number of different interventions start at once and this can lead to disengagement and poorer outcomes. Therefore, the committee recommended that the timing, intensity and frequency of different interventions, and how interventions relate and interact, should be central when planning interventions over both short and long timeframes. The committee agreed that rehabilitation practitioners should decide how they will collaborate and when to hold review appointments.

Evidence showed that people can be prevented from accessing appropriate rehabilitation services when healthcare practitioners do not believe rehabilitation will be effective for them. The committee agreed that some healthcare practitioners have pre-conceived ideas of what disorders and symptoms may and may not benefit from rehabilitation, stemming from the belief that rehabilitation is for managing disability rather than optimising or maintaining functioning.

Some people with a chronic neurological disorder were found to prefer rehabilitation delivered in a combination of home, community and clinical settings. The committee agreed that the most appropriate setting was usually the one most aligned to the person's goals and preferences.

Evidence showed that collaboration between practitioners helped to ensure that interventions were appropriate. It also showed that poor communication and coordination led to practitioners not having correct, up-to-date information when treating a person and so providing ineffective or untimely treatments.

Evidence showed that collaboration between healthcare and education services helped to increase efficiency of education support during rehabilitation. It also showed that involving employers in rehabilitation planning provided opportunities to discuss and manage expectations about delivering rehabilitation interventions within the workplace.

Evidence showed that in many cases the need to review goals decreased throughout rehabilitation, as goals became longer-term. Reviews were more frequent at the start of rehabilitation when goals tended to be more short-term and rehabilitation needs were still emerging.

Education support plans for adults with a chronic neurological disorder may not be reviewed. This means that changing needs are not identified, which can place stress on adult students.

Evidence showed that planning is more realistic when conversations are honest. The committee agreed that discussions should include possible rehabilitation interventions for the future and decisions on when to stop current interventions.

They also agreed that information about accessing equipment, technology and advice should be provided before rehabilitation ends.

The committee agreed the factors that should be taken into account when deciding whether a follow-up appointment would be needed, who should initiate it, and who should be involved. Deciding who will be involved will allow for good communication and coordination.

They also noted that the rehabilitation needs of children and young people will change as they grow and develop and therefore follow-up should be planned around key changes.

How the recommendations might affect practice

Currently, generic rehabilitation plans are often offered. Individualising these plans based on holistic rehabilitation assessments and involving the person's family may require additional staff time.

Early rehabilitation is not commonly provided and offering it to all people with a chronic neurological disorder, including those with poor prognoses, may increase access to interventions. Earlier and prolonged rehabilitation may also require additional staffing.

However, effective rehabilitation may help maintain people's independence, reduce the need for paid carers, positively impact mental health, and reduce overall NHS costs. Some resources may be needed to support rehabilitation services to engage with employment and education sectors. However, it may increase the chances of people returning to work or participating in vocational or social activities, which offers broader social and economic benefits.

Reviewing rehabilitation plans and follow-up should be standard practice for most services, but there may be resource implications for services where practices are sub-optimal. For example, additional staff time might be needed to review rehabilitation plans, agree and carry out follow-up appointments and ensure access to necessary interventions, equipment, technology and advice.

Return to recommendations

Why the committee made the recommendations

Evidence showed that a single point of contact can help people with a chronic neurological disorder coordinate their rehabilitation and provide information on accessing different services. It also showed that people want assistance with navigating the rehabilitation system and building rapport and long-term relationships with rehabilitation providers. The committee agreed that people and their families and carers do not always have the knowledge needed to navigate services, particularly at the beginning of rehabilitation. Therefore, the committee recommended that each person is provided with a single point of contact.

The committee recommended assessing the person's ability to self-manage their rehabilitation to determine the most appropriate type of single point of contact, and to review this if their needs change. They agreed that only people unable to coordinate their own rehabilitation should receive more intensive levels of support. They recognised that the level of support needed may change during rehabilitation and extra support may only be needed on a temporary basis.

The committee agreed that practitioners should think about the requirements of the role as well as the needs of the person before agreeing on a single point of contact.

They discussed and agreed the criteria for assigning a key worker and complex case manager. They agreed that the person must have at least one of the severe and complex needs listed for the assignment of a complex care manager to be considered. But they also agreed that the more of these criteria the person met, the more they should be prioritised for this kind of coordinated support. The same principles should be followed with the assignment of a key worker for people with less severe and complex needs.

The committee acknowledged that complex case management can be expensive. Given the lack of evidence about the cost effectiveness of complex case management, economic analysis aimed to estimate the required health benefits of complex case management for it to be effective. This analysis included a US study that showed cost reductions because of reduced accident and emergency (A&E) visits and hospital admissions. Cost effectiveness estimates were more likely to be within the range that NICE considers acceptable when the additional cost savings from reduced visits to A&E and hospital admissions were taken into account. The committee agreed that the findings of the analysis were consistent with their experience. In their opinion, and given current pressures on the NHS, the use of complex case managers may relieve strain on hospital resources.

The committee agreed that if the person's single point of contact is going to change when rehabilitation changes or ends, this should be communicated to the person so that they still have a single point of contact even when there is no active rehabilitation plan in place.

The committee made a recommendation for research on the effectiveness and cost effectiveness of complex case management in the delivery of rehabilitation for people with a chronic neurological disorder to enable provision of more detailed recommendations in this area in the future.

How the recommendations might affect practice

The roles of key contact and key worker could be undertaken by existing practitioners, avoiding the need to create new roles. However, there is a lack of complex case manager roles, even for the minority of people with the most complex needs, and so this is likely to require significant resources.

Implementing the recommendations may enable timelier access to assessment and care, which may reduce reliance on crisis care, potentially offsetting any additional costs. It may also reduce the number of people contacting their GPs in order to access care. Assigning a complex case manager, if needed, may provide other benefits such as reducing prolonged stays in inpatient neurobehavioural units or residential care.

Return to recommendations

Why the committee made the recommendations

Evidence showed that people with limited understanding of their condition access rehabilitation less. Access to rehabilitation services, social care and other support services were reduced when the person did not receive personalised information. The committee agreed the most important areas for this personalised information to cover.

The committee agreed that people with a functional neurological disorder are less likely to engage in rehabilitation programmes if a diagnosis is not accepted or understood. They set out the requirements for information provision and psychoeducation for this population.

Evidence showed that insufficient financial support to access transport and equipment, such as wheelchairs, hindered social participation. It also highlighted that applying for government support is often confusing, particularly for people with cognitive symptoms. The committee noted that while funding exists, it is poorly promoted, and application processes are difficult to navigate.

The committee highlighted the statutory requirement for local authorities to assess care and support needs for both paediatric and adult populations. However, as assessments must be requested and are not automatically offered, they noted that many people with a chronic neurological disorder and their families are unaware of this right.

Evidence highlighted that information should be accessible and timely and is particularly beneficial when people move between services. It also showed people with a chronic neurological disorder wanted detailed information on available therapies and equipment. The committee agreed that information should be offered when the person's needs change.

The committee agreed it was important to consider opportunities to deliver different learning elements of the person's rehabilitation plan at the same time.

The committee noted the importance of supporting people to disclose information about their condition and rehabilitation needs in the community and socially, as this can be challenging.

How the recommendations might affect practice

Most services should already provide information that is tailored to individual needs. However, the committee noted variations in practice. Where this is not done, additional resources may be needed, mainly staff time to develop or collate relevant resources and direct people to relevant services.

Return to recommendations

Why the committee made the recommendations

The committee agreed that identifying pain in people with a chronic neurological disorder is important because managing pain is fundamental to enabling the person to engage in rehabilitation. So, they recommended that healthcare practitioners ask about pain as part of holistic rehabilitation needs assessment.

The committee highlighted that people with a chronic neurological disorder may often persevere with pain or be prescribed analgesia that is ineffective. They recognised that healthcare practitioners can support people with a chronic neurological disorder to better understand and appropriately manage their pain so they can take part in rehabilitation.

The committee agreed that pain negatively impacts physical functioning and emotional wellbeing, which can decrease potential benefits of rehabilitation interventions. They recommended that pain management be discussed alongside rehabilitation goals and plans. They also agreed a list of rehabilitation interventions that could contribute positively to pain management and quality of life, recognising that both physical and psychological interventions can help.

The committee was aware that NICE's guidelines on chronic and neuropathic pain only cover the adult population and that advice would be needed regarding children and young people.

People with a chronic neurological disorder can present with complex pain issues that may require referral or advice from a pain specialist.

How the recommendations might affect practice

Pain management is already integral to rehabilitation. Including pain assessment in holistic rehabilitation needs assessments and considering it throughout the rehabilitation journey may identify more people needing pain management. However, many existing rehabilitation interventions also help reduce or manage pain, so no significant increase in resource use is anticipated.

Return to recommendations

Why the committee made the recommendations

How the recommendations might affect practice

Many people with a chronic neurological disorder report fatigue, but it is often overlooked by healthcare practitioners. Implementing these recommendations may require additional resources. However, fatigue management typically involves low-cost interventions like having discussions and providing advice on pacing and energy conservation strategies, which are not expected to have a significant resource impact.

Return to recommendations

Why the committee made the recommendations

The committee agreed that exercise and physical activity programmes are important for optimising muscle strength and physical functioning, but they need to be of the correct frequency, duration and intensity. They agreed that this is often overlooked.

Problems with executive function, fatigue and pain can be significant barriers to physical activity and so should be taken into account when developing exercise and physical activity programmes. The committee noted that supervised exercise, provided on an individual or group basis by an occupational therapist, physiotherapist or coach, can increase engagement.

People with a functional neurological disorder have specific needs in terms of exercise and physical activity programmes because of the nature of their condition, so the committee made an additional recommendation for this population.

Having a registered practitioner with the right expertise to develop and oversee the person's exercise and physical activity programme should promote safe and high-quality care.

The committee recognised that other activities could help the person's general physical health. Having a discussion to identify activities they enjoy, including those they can do independently, such as walking, can help ensure the person stays physically active in the long term.

Evidence showed that behaviour change interventions, delivered separately or alongside the person's physical activity programme, are effective in supporting sustained engagement in physical activity. One study also showed that a physical activity programme with a behaviour change component was cost effective. The committee also agreed that a person's family play an important role in encouraging physical activity, especially for a child or young person.

There was no evidence comparing different types of behaviour change interventions and the committee was not confident in recommending a specific intervention. Instead, they agreed to recommend interventions based on cognitive behavioural therapy, self-determination theory, social context theory, motivational interviewing or coaching techniques as they use similar techniques to encourage behaviour change and showed similar results.

The committee agreed that it is important to talk to the person to identify barriers preventing them achieving their physical activity goals and offer appropriate support.

The committee discussed the use of digital applications, such as the NHS Couch to 5K app, to promote physical activity. Although no evidence was identified, the committee noted the economic viability and growing popularity of these self-help tools. They made a recommendation for research on the effectiveness of digital applications to support people with a chronic neurological disorder to undertake physical activity.

How the recommendations might affect practice

Providing registered practitioners with expertise in exercise programmes and physical health to develop and oversee these programmes may require additional staff and training. However, this will help ensure the delivery of appropriate care and may reduce risks and potential harms, which can incur substantial costs to the healthcare system.

Physical activity programmes are often not optimised in frequency, duration, and intensity. Therefore, there may be potential resource implications where practices are sub-optimal. Often physical activity programmes may involve suggesting simple activities like walking, yoga or directing to existing self-help resources.

Engagement is a barrier and the availability of behavioural change interventions to sustain engagement with physical activity varies. Where such interventions are not available, introducing them may have a significant initial resource impact in terms of staff training to deliver these interventions. However, there will not be significant ongoing costs in delivering behaviour change interventions, with all recommended options having comparable costs. Any additional costs are very likely to be offset by improved health outcomes, such as reduced fatigue, and improved cardiovascular, general physical and mental health, because of increased participation in physical activity.

Return to recommendations

Why the committee made the recommendations

Evidence showed that standardised exercises for improving and sustaining stability, mobility and upper limb functioning had some benefits. However, the committee noted that specific and targeted exercises are more effective in addressing the diverse needs of people with a chronic neurological disorder. Based on their experience and expertise, they provided a list of interventions that can target the person's needs around stability, mobility and both upper and lower limb function.

The committee agreed that splints and orthoses are used as standard for stability, mobility and upper and lower limb function in people with a chronic neurological disorder. However, the committee also highlighted that interventions like serial casting may be harmful for some people, particularly for people with a functional neurological disorder. They agreed that using orthotics, splints or serial or removal casting without careful consideration can worsen symptoms and reinforce unhelpful beliefs.

Evidence showed that using gaming modalities and virtual reality to enhance exercises for stability, mobility and limb functioning improved engagement with rehabilitation. The committee agreed that engagement is a vital element of rehabilitation, and gaming modalities and virtual reality can help with this, especially for children and young people.

The committee emphasised the importance of agreeing exercises and training that the person can do independently (or with the help of family or carers) and as part of their day-to-day activities, including once supervision of activities has come to an end.

The committee agreed that serial and removable casting can restore or help maintain limb function and can prevent pain and joint misalignment. It is particularly useful for children and young people, because it can be adapted to growing limbs.

No evidence was identified for 24-hour postural management strategies. The committee used their experience and expertise to make recommendations in this area, stressing that it is an important aspect of care.

There was a lack of evidence on interventions for under-18s, so the committee made a recommendation for research on interventions to improve and sustain stability, mobility and upper limb functioning for children and young people with a chronic neurological disorder.

How the recommendations might affect practice

Most of the recommended interventions for stability, mobility and limb function problems are standard practice and implementing them is not expected to have a resource impact.

Sustaining engagement and timely access to rehabilitation is challenging. Gaming modalities and virtual reality may help with this. Virtual reality equipment is costly but can be reused. Therapists can monitor several people simultaneously and there is potential to replace expensive traditional machines. Practice varies, but some centres already have this equipment. Overall, this recommendation is not expected to significantly impact resources.

Robotics have high initial costs but can save practitioner time, allowing greater training intensity and potentially better outcomes due to the dose-response relationship. They enable long-term training and are likely to be cost effective, especially given the shortage of staff for delivering and supervising rehabilitation. However, robotic use and hydrotherapy is recommended only where equipment and facilities are available, and no significant resource use is anticipated.

Not all devices for functional electrical stimulation and neuromuscular electrical stimulation are NHS-funded. Some people buy the devices themselves or use Personal Independence Payment funding. The recommendations on electrical stimulation are not expected to result in a significant resource impact although some community settings may need to buy additional devices.

Return to recommendations

Why the committee made the recommendations

How the recommendations might affect practice

Providing a registered mental health practitioner to develop and oversee the emotional health and mental wellbeing element of a person's rehabilitation plan may require additional staff and training. However, this will help ensure the delivery of appropriate care and may reduce potential harms, which can incur substantial costs to the healthcare system.

Currently, the emotional health and mental wellbeing of people with a chronic neurological disorder are often overlooked, and services are usually provided separately from other rehabilitation services. Where neurorehabilitation services lack expertise in clinical psychology or neuropsychology, additional resources may be needed to enable effective two-way communication between neurorehabilitation and mental health services.

More consistent consideration of emotional health and wellbeing, behaviour and cognitive function may require additional staff and training and increase demand for support services. However, not everyone with a chronic neurological disorder will require such support. This approach may also enable earlier, targeted support, improve outcomes, and potentially reduce overall costs by reducing inappropriate therapy and reliance on crisis care.

Staff in general mental health services may need additional training to understand the challenges faced by people with chronic neurological conditions and deliver appropriate interventions. Better communication between services could improve care and health outcomes, potentially saving costs for the NHS.

Return to recommendations

Why the committee made the recommendations

How the recommendations might affect practice

Assessing emotional health and mental wellbeing, and behaviour, alongside cognitive function, may require additional staff and training. Providing a registered practitioner with expertise in neuropsychology to oversee and interpret cognitive assessment and oversee the cognitive functioning element of a person's rehabilitation plan may also require extra staff and training. However, these approaches may enable earlier, targeted support, reduce inappropriate therapy and prevent potential harms, all of which incur substantial costs for the healthcare system.

Repeating cognitive assessments in children and young people should reflect standard practice for most services, so no resource impact is anticipated.

Functional assessments are not done in standard practice and would require additional resources, including staff training. However, any additional costs may be offset by improved cognitive functioning in people with a chronic neurological disorder, leading to cost savings because of, for example, reduced support needs. Better assessment and consideration of cognitive function may lead to an increase in the number of people accessing cognitive rehabilitation, putting pressure on existing services. However, this is justified based on clinical need. Most recommended interventions to improve or maintain cognitive function are current practice.

Dynamic testing and observation for people with a functional neurological disorder may require more practitioner time compared to standard cognitive tests. However, the extra time needed is unlikely to be significant and this approach may help prevent misdiagnosis and unnecessary or inappropriate interventions, potentially offsetting any additional costs.

Return to recommendations

Why the committee made the recommendations

The committee recognised the impact of speech, language and communication impairments on the health and wellbeing of people with a chronic neurological disorder. They were also aware that rehabilitation practitioners often overlook these impairments. To avoid this, they agreed that people should be asked about speech, language and communication strengths and difficulties as part of holistic rehabilitation needs assessment.

The evidence did not provide information on how to prioritise assessments for speech, language and communication impairments. The committee noted that some people who have speech, language or communication difficulties are not being assessed by a speech and language therapist. For this reason and based on their experience, they recommended initial screening by a speech and language therapist, with further assessment, if needed.

The committee agreed that urgent assessment is only needed for people with severe speech, language and communication impairments and should cover use of alternative and augmentative communication equipment, if there is a clinical need for it.

Overall, the evidence did not show the effectiveness of one speech, language and communication technique over another (for example, exercises targeting respiration compared to exercises targeting phonation). However, the committee agreed that therapy should be offered, if needed, and can be more effective if framed within the context of the person's rehabilitation goals. They also agreed it may be helpful for the person to learn functional skills by practising in real-life environments.

The committee recognised that offering speech and language therapy to people who need it can have wider social and economic benefits, for example, by enabling the person to get back to work.

Based on their experience, the committee agreed that speech and language therapists are best qualified to deliver education and training programmes in communication skills for family, carers or others important to the person. These programmes are important as they enable meaningful communication between the person and those most important to them. This may include teaching sign language.

Evidence suggested that electronic voices can sound too robotic to convey emotions. Creating a personalised synthetic voice can reduce the robotic effect but is costly and not always suitable. The committee advised early referrals to voice banking services for those with voice loss, or likely to lose their voice.

How the recommendations might affect practice

Speech, language, and communication impairments are often currently overlooked. Considering these aspects in holistic rehabilitation assessments will identify more people with such problems, leading to more people accessing further assessment and support services, and an increased demand for speech and language therapists.

Improved speech, language and communication may reduce anxiety, depression and social isolation. Other potential benefits include better engagement in rehabilitation, fewer hospital admissions and unplanned care visits, fewer GP visits, and less intensive support from carers and other support services. Potential cost savings from these changes may offset the costs associated with providing more assessments and interventions by speech and language therapists. Improved speech, language and communication may also increase participation in education and employment offering broader social and economic benefits.

Referring people with severe speech, language or communication impairments for assessment for alternative and augmentative communication equipment, if clinically indicated, reflects current practice and is not expected to require additional resources.

There may be more referrals to voice banking services. However, these are usually self-funded or covered by personal independence payments.

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Why the committee made the recommendations

How the recommendations might affect practice

Providing a registered practitioner trained in dysphagia to assess the person's ability to eat, drink and swallow if there are indicators of dysphagia may require additional staff and training. However, this will help ensure the delivery of appropriate care and may reduce potential harms, which can incur substantial costs to the healthcare system. Other recommendations should reflect standard practices for most services, with no resource impact anticipated.

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Why the committee made the recommendations

Most studies on interventions for independent living, including provision of equipment and environmental adaptations, either did not show a benefit or did not report a sustained effect. However, the committee noted that many of the interventions included in the evidence were not sufficiently tailored to participants' rehabilitation needs. Therefore, the committee made general recommendations based on their knowledge and experience. They were unable to make recommendations about specific interventions because they vary widely depending on the person's neurological condition and their circumstances. They made a recommendation for research on approaches to improve or maintain independence with activities of daily living.

How the recommendations might affect practice

Providing registered practitioners to develop and oversee the element of the person's rehabilitation plan concerned with improving or maintaining independence with activities of daily living may require additional staff and training. However, this will help ensure the delivery of appropriate care and may reduce potential harms, which can incur substantial costs to the healthcare system.

Rehabilitation practitioners delivering interventions to support independence in daily life require specialised training. Availability of specialists may vary, but sharing expertise between specialist and community rehabilitation services should mitigate the lack of expertise and need for additional training.

Early access to occupational therapy may increase pressure on services. Timely provision of equipment and environmental adaptations may require more collaboration and communication between services. Access to equipment and environmental adaptations, and access to funding currently varies, and may require additional resources to implement.

The committee recognised the potential benefits of increased independence, including mental health and wellbeing, and related cost savings from reduced need for paid carers, prolonged inpatient or residential care and crisis care. There are also broader economic and social benefits from increased engagement with work, education and social activities. Therefore, any additional costs for supporting independence are likely to be offset by the value of these benefits.

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Why the committee made the recommendations

There was a lack of quantitative evidence on the effectiveness of interventions or approaches for supporting people to remain in, return to or leave education and training. So, instead the committee made recommendations based on their expertise and qualitative evidence.

Evidence showed early communication from healthcare practitioners allows education settings to prepare for potential support needs. The committee agreed this should happen even if rehabilitation needs are not yet confirmed.

Evidence showed that healthcare practitioners have an important role in helping education practitioners to understand the rehabilitation needs of children and young people with a chronic neurological disorder and how they can support them. The committee noted that healthcare practitioners should have conversations with the school or college and update them as prognoses are determined and rehabilitation needs are identified. They should also agree the equipment, adaptations and adjustments necessary to meet the child or young person's needs.

Evidence indicated that it is useful to provide education practitioners with a named contact for the child's rehabilitation. It was found to support effective information sharing and collaboration and led to better support in the education setting. Further evidence indicated that information on support needs is often lost when changes happened, such as when a child moves to a different school of college or their teacher changes, and noted this issue is common at key stage changes. The committee agreed that it was important for reciprocal information sharing to be maintained at all times.

Evidence highlighted that regular review of education, health and care plans is needed to address the evolving rehabilitation and support needs that all children and young people with a chronic neurological disorder will face. This should include discussions about the appropriateness of education settings.

How the recommendations might affect practice

The recommendations reinforce current best practice, with potential resource impact where services are sub-optimal. The committee noted that low-cost strategies could be used to support implementation. For example, designating an existing healthcare practitioner for ongoing communication with education providers. Overall, significant resource impact is not expected. Any additional costs are likely to be offset by the return and retention of children and young people in education, along with improved social participation, health and wellbeing, and broader social and economic benefits.

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Why the committee made the recommendations

There was a lack of quantitative evidence on the effectiveness of interventions or approaches for supporting people to enter, remain in or leave employment and volunteering. So, instead the committee made recommendations based on their expertise and qualitative evidence.

The committee agreed key elements to take into account when assessing a person's ability to remain to work. They also agreed support should be provided if the person cannot remain or return to work.

Evidence showed that discussions around remaining in, or returning to work should start as early as possible, ideally involving the employer, where this follows the wishes of the person. This can help to identify support needs and set expectations. The committee highlighted the importance of identifying and addressing any potential barriers for return to work, as well as collaborating with other professionals in the workplace in order to access support.

The committee agreed that the detailed guidance on managing return-to-work in NICE's guideline on stroke rehabilitation in adults was applicable to the populations covered in this guideline.

The committee discussed their experiences of employers carrying out workplace assessments. They agreed that these were good opportunities to focus on the environmental, cultural and procedural barriers that the workplace may now have for the person.

Evidence showed that although there were benefits to educating employers about chronic neurological disorders, people with these disorders were worried that disclosing too much information could lead to discrimination. The committee was unable to give details about the sort of information that should not be disclosed. However, they noted that employers should discuss and agree what information to disclose.

The committee agreed that the environment in which people are assessed and in which vocational rehabilitation is delivered is important. For example, a quiet clinical setting may be suitable for people who are learning new skills, while a busy office environment with cognitive and sensory challenges may provide a more realistic setting for practising skills.

The committee agreed that vocational rehabilitation needs can fluctuate greatly for people with a chronic neurological disorder and so it is important to review these whenever aspects of rehabilitation that impact on work are reassessed. They also discussed that there is need for employers to be proactive so that any future rehabilitation needs can be planned for before they arise.

The committee highlighted the importance of extending employment or volunteering opportunities for people with a chronic neurological disorder. They acknowledged that failure to do so significantly affects quality of life and national productivity. Therefore, the committee agreed a recommendation for research on support to access employment to help inform future recommendations in this area.

How the recommendations might affect practice

There is considerable variation in the delivery of vocational rehabilitation services. Implementing the recommendations may require a slight reconfiguration of existing services, potentially achievable within current funding, with no significant resource impact anticipated. Interactions between healthcare practitioners and education services are often through email, and fewer face-to-face meetings could be more efficient. Free e-learning modules on partnership working and resources for GPs and employers are available to support collaborative working.

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Why the committee made the recommendations

There was a lack of quantitative evidence on the effectiveness of interventions or approaches for supporting participation in social and leisure activities. So, instead the committee made recommendations based on their expertise and qualitative evidence.

Evidence showed that access to support for social participation for people with a chronic neurological disorder is impacted by other people's attitudes as well as the person's perception of these attitudes. For example, people experienced barriers when they believed that healthcare practitioners were uninterested in discussing this aspect of rehabilitation. The committee noted the importance of discussing potential barriers to social participation with the person, as well as working together to explore strategies to manage these barriers. They also highlighted that healthcare practitioners should recognise that social participation goals can often align with simple, everyday activities aimed at fostering relationships.

Evidence showed that people were often unaware of local social clubs and activities. The committee recognised improved mental wellbeing, cognition and physical health as important rehabilitation goals. These are supported by social participation in activities offered by local social clubs and activities.

Evidence showed that people with a chronic neurological disorder may struggle to complete forms to access social activities and that this is made worse if they have cognitive difficulties. They agreed that GPs often provide this support but noted that any healthcare or social care practitioners could do this.

The committee highlighted that requirements for adjustments or adaptations and concerns over toileting needs are common barriers to social participation that are often overlooked.

People with a chronic neurological disorder can find it challenging and emotional to discuss their condition and what adjustments and adaptations they need. The committee recognised that healthcare practitioner support in these conversations is needed.

The committee recognised that people with bladder or bowel incontinence are often deterred from exploring activities outside familiar settings, and this should be taken into account.

Evidence showed that access to community activities may be limited because of poor service availability or travel challenges. The committee agreed that online options should be considered.

How the recommendations might affect practice

Practices to support social participation for people with a chronic neurological disorder vary. Staff may need training to ensure they are well-informed and can provide appropriate signposting.

Community services supporting social participation vary across the country. Additional resources may be needed to establish services or address travel challenges. Online options could help to mitigate potential resource impact.

Social participation can reduce isolation and improve wellbeing, which in turn may prevent mental health problems. Interventions to promote social participation are therefore likely to represent value for money.

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Why the committee made the recommendations

There was a lack of quantitative evidence on the effectiveness of interventions or approaches for supporting family life and friendships. So, instead the committee made recommendations based on their expertise and qualitative evidence.

The committee recognised that people with a chronic neurological disorder often face added challenges with family life and friendships, including parenting and caring relationships. For example, mobility issues can impact on socialising and fatigue can affect caregiving. The committee noted clear benefits to overall wellbeing, mental health and quality of life of maintaining family relationships and friendships.

The committee agreed that rehabilitation needs and goals around family life and friendships should be treated like any other rehabilitation needs and goals.

The committee agreed that barriers to family life and friendships should be discussed as part of rehabilitation assessment, goal setting and planning.

The committee noted that people with parenting or caring roles face specific physical and emotional demands that need to be considered. They may need support accessing parental support services and targeted rehabilitation to strengthen their parental and caring skills.

How the recommendations might affect practice

The recommendations reflect current best practice and are not expected to have significant resource impact. Services may need to train staff to offer rehabilitation connected with family life and friendships, including parenting and caring relationships. More staff time may be needed to explore these issues. Overall, any additional costs are expected to be offset by the potential benefits of maintaining relationships and their positive impact on overall wellbeing, mental health and quality of life.

Return to recommendations

Why the committee made the recommendations

There was a lack of quantitative evidence on the effectiveness of interventions or approaches for supporting intimate and sexual relationships. So, instead the committee made recommendations based on their expertise and qualitative evidence.

Evidence showed that there is a lack of information about intimate and sexual relationships, and sex, for people with a chronic neurological disorder and that this adversely impacts intimacy and sexual rehabilitation. The committee noted that even where information is available, it is poorly promoted.

Evidence highlighted that sexual needs were often missed in rehabilitation plans as people were not asked about intimacy and sexual wellbeing. The committee added that people with a chronic neurological disorder were often open to discussions about sexual rehabilitation but felt uncomfortable raising the subject themselves.

Evidence showed that rehabilitation practitioners were not comfortable starting conversations about sexual rehabilitation and intimacy as they did not have the necessary knowledge or skills. The committee agreed that health practitioners needed to improve their skills and confidence by seeking advice and support about leading these discussions.

Evidence highlighted a lack of knowledge among healthcare practitioners about sexual rehabilitation and intimacy, including who to refer to. The committee agreed that there is a limit to the level of knowledge and training that non-specialists can expect to obtain, but they should know when and how to signpost to appropriate services.

The committee agreed that the topic of intimacy and sexual relationships could raise safeguarding concerns especially for children and young people and people who lack capacity.

The committee agreed that discussions around intimacy and sexual relationships are sensitive and personal, and therefore a person's gender identity, sexual orientation, religion and cultural beliefs should be taken into account to encourage open conversations.

The committee agreed that to set and achieve realistic rehabilitation goals, barriers to intimate and sexual relationships need to be identified and addressed.

They also agreed that methods for gathering initial information should reflect people's preference as some will prefer in-depth discussions while others will prefer self-reported questionnaires.

The committee agreed that people with a chronic neurological disorder may need support with discussing their disorder and its impact on intimacy, sex and sexual functioning with partners.

The committee discussed and agreed a range of measures for addressing rehabilitation needs connected with intimate or sexual relationships and sex. These may relate to healthcare settings, for example, there may be a lack of privacy in residential settings if bedroom doors cannot be closed.

How the recommendations might affect practice

Including intimate and sexual relationship discussions in rehabilitation may require more staff time, leading to more people being identified and accessing treatment services. Some resource implications are likely, but these are unlikely to be significant.

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