New NICE guidance for cerebral palsy in adults
How occupational therapists should be involved in support for adults with cerebral palsy
Published on 18th July 2018
Commissioners and service providers should develop pathways that allow adults with cerebral palsy access to a local network of care that includes occupational therapy and physiotherapy, the National Institute for Health and Care Excellence has stated.
In draft guidelines for cerebral palsy in adults, NICE says that a local network of care should include advocacy support, learning disability services, mental health services, orthopaedic surgery and post-surgery rehabilitation, rehabilitation engineering services, rehabilitation medicine or specialist neurology services, secondary care expertise for managing comorbidities (for example, respiratory, gastrointestinal and urology services), social care, wheelchair services and specialist therapy services such as physiotherapy and occupational therapy.
Professionals should recognise and address barriers to accessing primary and secondary care for adults with cerebral palsy including:
Personal barriers such as:
Mental health related issues
Social and emotional factors
Physical barriers such as:
Inadequate physical access to buildings
Difficulties with transport
Organisational barriers such as:
Lack of availability of appropriate equipment (for example, hoists and wheelchair weighing scales) and adequate changing and toilet facilities
Inadequate time given in appointments, for example, to allow for hoisting and dressing.
Professionals should also be aware that adults with cerebral palsy and poor intelligibility of speech may still prefer to use speech as their main means of communication. Adults with cerebral palsy who have communication difficulties should be referred to speech and language therapists to assess their need for alternative or augmentative communication systems or intensive speech therapy to improve their speech or expressive language.
If adults with cerebral palsy have complex physical, cognitive, language or sensory needs, professionals should consider offering referral to occupational therapy services to assess the person’s functional needs and provide individualised support.
Adults with cerebral palsy hold be provided with information about assessments of vocational and independent living skills that is tailored to the person’s functional abilities and goals.
The draft guideline states that if an adult with cerebral palsy finds it difficult to participate in a chosen activity, their physical and mental health should be assessed and any factors identified that may be affecting participation should be addressed, if possible.
Adults with cerebral palsy who would like to work or live independently, or who are already working, should be referred to a professional with expertise in vocational and independent living skills. Information should be given on:
- · 'Access to work' schemes
- · Employment support to include workplace training and job retention
- · Leisure activities
- · Occupational health assessment or workplace assessment
- · Statutory welfare benefits
- · Supporting a planned exit from the workforce if it becomes too difficult to continue working
- · Vocational rehabilitation
- · Voluntary work
Professionals should discuss with adults with cerebral palsy the potential need for electronic assistive technology if they have problems with participation and independence. If adults with cerebral palsy have complex physical, cognitive, language or sensory needs, professionals should consider referring them to services providing information, assessment and provision of electronic assistive technology. Training should be provided for adults with cerebral palsy using electronic assistive technology, and for their families or carers, if appropriate.
Professionals should consider referring people with cerebral palsy to services with experience and expertise in neurological impairments that can provide support with physical activities (including sport) and tasks of daily living. Depending on local service provision and the person’s needs, this may be to one of the following services:
- · physiotherapy
- · occupational therapy
- · rehabilitation engineering services
- · wheelchair services.
NICE highlights the need to identify and address mental health problems alongside physical health problems. Professionals need to recognise that the impact of mental health problems and emotional difficulties can be as important as physical health problems for adults with cerebral palsy. Professionals should tailor the identification and assessment of mental health problems and emotional difficulties to the needs and abilities of the person, in particular taking into account communication difficulties or learning disabilities.
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