Quality standard

Quality statement 1: Referral to a specialist multidisciplinary team

Quality statement

Adults with cerebral palsy are referred to a specialist multidisciplinary team if their ability to carry out usual daily activities deteriorates or is expected to deteriorate.

Rationale

A specialist multidisciplinary team, experienced in the management of neurological impairments, can work with people with cerebral palsy to identify their needs and understand how these may change over time. The team can also advise on specialist treatment options (such as neurosurgical or orthopaedic procedures for dystonia and spasticity) and the possible impact these might have on the person's abilities. The team will know what specialist and local services are available and how they can be accessed. Access to specialist multidisciplinary teams is particularly important when a person with cerebral palsy is having difficulty carrying out their usual daily tasks, or if their ability to do so is expected to become more difficult, for example, as a result of an operation that is being planned. Referral to a specialist multidisciplinary team can reduce delays in management or unplanned visits to hospital.

Quality measures

Structure

a) Evidence of local pathways to allow adults with cerebral palsy to be referred to a specialist multidisciplinary team.

Data source: Local data collection, for example, from service specifications, NHS trust directories of services and clinical commissioning group pathways.

b) Evidence of local networks of care providing access to specialists in adult rehabilitation medicine, neurodisability, physiotherapy, occupational therapy, and speech and language therapy.

Data source: Local data collection, for example, from service specifications, NHS trust directories of services and clinical commissioning group pathways.

c) Evidence of local services with specialist multidisciplinary teams.

Data source: Local data collection, for example, from service specifications, NHS trust directories of services and clinical commissioning group pathways.

Process

a) Proportion of adults with cerebral palsy whose ability to carry out their usual daily activities deteriorates who are referred to a specialist multidisciplinary team.

Numerator – the number in the denominator who are referred to a specialist multidisciplinary team.

Denominator – the number of adults with cerebral palsy whose ability to carry out their usual daily activities deteriorates.

Data source: Local data collection, for example, local audit of patient records.

b) Proportion of adults with cerebral palsy scheduled for neurosurgical or orthopaedic procedures who are referred to a specialist multidisciplinary team.

Numerator – the number in the denominator who are referred to a specialist multidisciplinary team.

Denominator – the number of adults with cerebral palsy scheduled for neurological or orthopaedic procedures.

Data source: Local data collection, for example, local audit of patient records.

Outcome

Rate of unplanned hospital admissions of adults with cerebral palsy.

Data source: Local data collection, for example, local audit of patient records. NHS Digital's Hospital Admitted Patient Care Activity includes the number of admissions by primary diagnosis and admission type.

What the quality statement means for different audiences

Service providers (such as community neurorehabilitation services, neurology services and rehabilitation services) ensure that they have a specialist multidisciplinary team with expertise in neurodisabilities, and referral pathways so adults with cerebral palsy can be referred to the team to coordinate care. They have systems in place to ensure that specialist multidisciplinary teams can assess the needs of adults with cerebral palsy and their ability to carry out daily activities. They establish networks, which may be virtual, to allow teams to work across organisations including community, hospital and tertiary services.

Health and social care practitioners (such as GPs, doctors, therapists, social workers and home care workers) ask adults with cerebral palsy about any changes in their ability to carry out daily activities and discuss any possible future changes. They refer them to a specialist multidisciplinary team if the person's abilities have worsened. Surgeons and anaesthetists considering orthopaedic or neurological procedures for adults with cerebral palsy who anticipate an impact on daily living skills communicate with and refer the person to a specialist multidisciplinary team. Members of the specialist multidisciplinary team assess the person's needs, anticipate changes and adjust their care and support, as needed.

Commissioners (such as clinical commissioning groups and NHS England) ensure that they develop pathways that allow adults with cerebral palsy to be referred to a specialist multidisciplinary team experienced in the management of neurological impairments.

Adults with cerebral palsy are asked if they find it harder to carry out their usual daily activities by the people who provide their care. If they do, or if an operation is being considered, they are referred to a specialist team to talk about whether they need any extra or different support.

Source guidance

Cerebral palsy in adults (2019) NICE guideline NG119, recommendation 1.1.1

Definitions of terms used in this quality statement

Adults

For this quality standard, adults are defined as people aged 25 and over, in line with the source guidance. The NICE quality standard for cerebral palsy in children and young people covers people under 25.

[NICE's guideline on cerebral palsy in adults]

Expected to deteriorate

Ability to carry out usual daily activities is anticipated to be affected by any neurosurgical or orthopaedic procedure being considered.

[Adapted from NICE's guideline on cerebral palsy in adults, recommendation 1.1.1]

Specialist multidisciplinary team

A team experienced in managing neurological impairments. The composition of the team varies with the severity of cerebral palsy, and the level of the person's impairment and disability. The input from each team member will also vary with time, but access to specialist medical input must be maintained. This team could include the following members:

  • medical consultant (such as a rehabilitation, neurology or respiratory specialist)

  • specialist nurse

  • allied health professionals (such as a speech and language therapist, physiotherapist, occupational therapist, dietitian or orthotist)

  • others (such as a psychologist, learning disability psychiatric nurse or social worker).

The team provides access to:

  • 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

  • specialist therapy services (for example, physiotherapy, occupational therapy, speech and language therapy, and dietetics)

  • wheelchair services.

[Adapted from NICE's guideline on cerebral palsy in adults, recommendation 1.1.3, NICE's statement on the impact on NHS workforce and resources and expert opinion]