Quality statement 2: Named lead practitioner

Quality statement

People growing older with a learning disability have a named lead practitioner.

Rationale

Care and support needs may change and become more complex as people with a learning disability grow older. A named lead practitioner is the point of contact for the person growing older with a learning disability and their support network (family, friends, carers, advocates or others who provide emotional and practical help to the person). They can help people access the right support at the right time and coordinate care between different health and social care providers.

Quality measures

A specific age limit is not used to define older people with a learning disability in this quality standard (see the definitions section). For measurement purposes, commissioners may wish to define a specific age group or range of age groups based on their local population.

Structure

a) Evidence of local arrangements to ensure that named lead practitioners are responsible for coordinating care and support of people growing older with a learning disability.

Data source: Local data collection, such as records from community learning disability teams or GP practices.

b) Evidence of local arrangements to ensure that lead practitioners have access to all agencies involved in supporting people growing older with a learning disability.

Data source: Local data collection, such as review of service level agreements.

Process

Proportion of people growing older with a learning disability who have a named lead practitioner.

Numerator – the number in the denominator who have a named lead practitioner.

Denominator – the number of people growing older with a learning disability.

Data source: Local data collection, such as records from community learning disability teams or GP practices.

Outcome

Proportion of people growing older with a learning disability who feel they can access the support they need when they need it.

Numerator – the number in the denominator who feel they can access the support they need when they need it.

Denominator – the number of people growing older with a learning disability who receive care and support from health and social care services.

Data source: Local data collection, for example, surveys on the experience of support among people growing older with a learning disability.

What the quality statement means for different audiences

Service providers (such as GP practices, community learning disability teams or adult social care services) ensure that systems are in place for people growing older with a learning disability to have a named lead practitioner who is responsible for coordinating their care across different services. They also ensure that lead practitioners have access to all agencies involved in supporting people growing older with a learning disability, and that they are informed and involved in decision making.

Health and social care practitioners (such as GPs, learning disability nurses or social care workers) with appropriate skills and knowledge act as the named lead practitioner for the person growing older with a learning disability. They get to know the person and coordinate support to meet their long-term needs. They work in partnership with the person, and their family or carers, to arrange regular meetings to discuss the person's care and support, and invite people in the person's support network to the meetings, if this is what the person wants or when decisions are made in a person's best interests. They identify gaps in support and service provision and report these to the lead commissioner. They develop and review the care and support plan with the person growing older with a learning disability, and their support network.

Commissioners (such as clinical commissioning groups or local authorities) commission services in which people growing older with a learning disability have a named lead practitioner who is responsible for coordinating their care and support. They also put in place information sharing agreements and protocols to ensure that people growing older with a learning disability receive care and support that meets their needs.

People growing older with a learning disability have a person who coordinates their care and support as they grow older. This means that they do not need to contact different services to get the support they need. They have a good relationship with this person and know that they can ask them questions or ask for help if they need it.

People from the person's support network (family, friends, carers, advocates or others who provide emotional and practical help to the person) have a person who they can contact when they or the person growing older with a learning disability need advice, information or support. They do not need to contact different services to get the support they need.

Source guidance

Care and support of people growing older with learning disabilities (2018) NICE guideline NG96, recommendations 1.4.6 and 1.5.7

Definitions of terms used in this quality statement

People growing older with a learning disability

A specific age limit is not used in this quality standard to define people growing older because adults with a learning disability typically experience age-related difficulties at different ages, and at a younger age than the general population.

[NICE's guideline on care and support of people growing older with learning disabilities, terms used in this guideline]

Named lead practitioner

A named contact with appropriate skills and knowledge, such as a social worker or community learning disability team, or community learning disability nurse, who gets to know the person and coordinates support to meet their long-term needs. Their responsibilities include working in partnership with the person to:

  • arrange regular meetings to discuss the person's care and support, and invite people in their support network, including the family, carers, independent advocates and practitioners from all services that support them

  • recognise and use the expertise brought by all members of the person's support network (not only those who are paid)

  • develop and review the person's care and support plans with community learning disability teams, social care services and other relevant providers.

[Adapted from NICE's guideline on care and support of people growing older with learning disabilities, recommendation 1.5.7]

Equality and diversity considerations

Lead practitioners may find it particularly difficult to communicate effectively with people who have a severe or profound learning disability. They may have to identify support necessary to engage people growing older with a learning disability in a meaningful way. This may include involving speech and language therapists or working with people from the person's support network on finding solutions to allow for effective communication. They may also use augmentative and alternative communication approaches such as manual signs, pictures, objects and aids to help people to communicate well.