Rehabilitation for chronic neurological disorders including acquired brain injury

Ensure rehabilitation services and care pathways are designed and developed in partnership with:

• the people who use them

• families and carers of people who use them

• voluntary, community and social enterprise (VCSE) organisations that work with people with a chronic neurological disorder

• health, mental health and social care practitioners who deliver these services.

Use inclusive and proactive strategies to seek feedback from people with a chronic neurological disorder about their experiences of rehabilitation and use this feedback to inform service design.

Design rehabilitation services for people with a chronic neurological disorder that:

• address their rehabilitation needs, from when they first develop symptoms or impairments, or are diagnosed

• include potential for lifelong support and monitoring

• operate across hospital and community settings, including people's homes, and where they work, learn and undertake day-to-day activities

• make use of VCSE and private sector providers, including sport and leisure providers

• include the mix of specialist neurorehabilitation services and general rehabilitation services required.

Establish integrated, collaborative and flexible clinical pathways across hospital and community rehabilitation services to address people's needs throughout their life.

Agree who has overall designated responsibility for implementing clinical pathways for children and young people, and, separately, for adults, taking into account local and national commissioning responsibilities.

Commission services that ensure people with a chronic neurological disorder have access to a single point of contact, that is a key contact, key worker or complex case manager depending on their rehabilitation needs.

Produce service specifications for integrated rehabilitation care for people with a chronic neurological disorder that include the following:

• practitioners to lead and coordinate holistic rehabilitation needs assessments, and agree and oversee delivery of rehabilitation plans

• advocacy services (for people who need them)

• information, advice, education and training to support all aspects of rehabilitation

• play interventions that facilitate the delivery of rehabilitation for children

• environmental adaptations

• equipment, assistive devices and compensatory aids

• pain and fatigue management interventions

• exercise and physical activity programmes for muscle strength, exercise capacity and physical functioning, and other interventions for general physical health

• gait training, exercises and equipment for stability, mobility and limb function

• interventions for:

  • emotional health and mental wellbeing

  • cognitive function

  • speech, language and communication

  • eating, drinking and swallowing

• occupational therapy and skills-based learning

• interventions to enable supported self-management

• interventions to support engagement in education, employment, social and leisure activities, parenting, family life, friendships, intimate and sexual relationships, and sex.

Ensure collaboration between commissioning bodies from healthcare, social care and other relevant community service providers, including education services for children and local voluntary, community and social enterprise (VCSE) organisations.

Ensure there are clear local service level agreements in place for the provision of mental health services as part of rehabilitation for adults, and separately for children and young people, with a chronic neurological disorder.

Develop local workforce skills to help build capacity for neurorehabilitation and mental health services for people with a chronic neurological disorder.

Develop protocols to improve communication between neurorehabilitation, mental health and other services involved in delivering and supporting rehabilitation.

Ensure that GPs and other primary care practitioners know how to recognise emerging rehabilitation needs because of an existing chronic neurological disorder and know when and how to refer people to rehabilitation specialists. For example, by using expertise from specialist neurorehabilitation services and maintaining up-to-date information on options for local rehabilitation services.

Ensure that health, mental health and social care practitioners know how to commission high-cost specialist equipment and services.

If availability of specialist neurorehabilitation services is restricted in some areas or for some people, including for people living in rural areas or with rare conditions, collaborate within and between integrated care systems to:

• enable access to specialist care where possible, including via telehealth

• share specialist advice and expertise with non-specialist services

• explore provision of general community rehabilitation services supported by specialist neurorehabilitation services.

Consider funding social and leisure group activities to support rehabilitation in the community. When doing this, take account of the following:

• people do not always want to socialise with people who have the same condition as them

• some people may want to socialise with others facing similar challenges

• younger people may feel more comfortable socialising with their peers

• cultural factors

• some people may feel more comfortable in social and leisure groups for the wider community if they are reassured these groups will be accessible to them.

Service providers from all specialties and sectors, including the voluntary, community and social enterprise (VCSE) and private sector, should communicate and collaborate, to ensure care pathways are responsive to people's needs, including when people are moving between services.

Set up simple referral and re-referral (including self-referral) mechanisms that allow people with a chronic neurological disorder to access rehabilitation needs assessments, interventions and support when they need it, including after they have been discharged from rehabilitation services.

Consider sharing rehabilitation needs assessments to improve the speed, efficiency and responsiveness of service provision (for example, use of trusted assessments).

Ensure rehabilitation services have the capacity and expertise to respond in a timely and proportionate way to people who have:

• changing needs outside of planned interventions

• rapidly emerging needs.