Quality statement 1: Point of contact with specialist services

Quality statement

Adults with Parkinson's disease have a point of contact with specialist services.

Rationale

A point of contact with specialist services will facilitate continuity of care and ensure that adults with Parkinson's disease have ongoing access to information, advice, care and support when they need it. This will support self-management and informed decision-making and will help to ensure that individual needs are proactively reviewed and managed. The point of contact could be a Parkinson's disease nurse specialist.

Quality measures

Structure

Evidence of local arrangements to ensure that specialist services can provide a point of contact for adults with Parkinson's disease.

Data source: Local data collection, for example, service protocols. The UK Parkinson's Excellence Network UK Parkinson's Audit identifies whether patients in elderly care and neurology services can access a Parkinson's disease nurse specialist.

Process

Proportion of adults with Parkinson's disease who have a point of contact with specialist services.

Numerator – the number in the denominator who have a point of contact with specialist services.

Denominator – the number of adults with Parkinson's disease.

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

Outcome

a) Satisfaction of adults with Parkinson's disease with ease of access to specialist services.

Data source: Local data collection, for example, patient survey.

b) Satisfaction of adults with Parkinson's disease that they have the support and knowledge they need to self-manage their condition.

Data source: Local data collection, for example, patient survey.

What the quality statement means for different audiences

Service providers (such as hospital elderly care services, neurology services and NHS community providers) ensure that adults with Parkinson's disease have ongoing access to a point of contact with specialist services. Providers should ensure that, where possible, the point of contact for adults with Parkinson's disease is a healthcare professional who they already know, and that response times are clear.

Healthcare professionals (such as Parkinson's disease nurse specialists, community matrons and allied health professionals) provide ongoing support and information about clinical and social matters to adults with Parkinson's disease within agreed response times. Support should include clinical monitoring and medicines adjustment, and home visits when appropriate.

Commissioners (such as clinical commissioning groups) commission services that ensure that adults with Parkinson's disease have ongoing access to a point of contact with specialist services, with clear response times.

Adults with Parkinson's disease have a point of contact with specialist services, such as a nurse specialising in caring for people with Parkinson's disease, who they can contact between their reviews. If they do make contact, they should know how long it will take for someone to get back to them.

Source guidance

Parkinson's disease in adults (2017) NICE guideline NG71, recommendation 1.1.6

Definitions of terms used in this quality statement

A point of contact with specialist services

A point of contact with specialist services that adults with Parkinson's disease can access between scheduled reviews. This could be a Parkinson's disease nurse specialist. The point of contact should provide access to:

  • clinical monitoring and medicines adjustment

  • ongoing support, including home visits when appropriate

  • information about clinical and social matters of concern to people with Parkinson's disease and their family and carers (as appropriate).

[Adapted from NICE's guideline on Parkinson's disease in adults, recommendations 1.1.6 and 1.7.1]