Rare diseases

  • Quality standard
  • QS214
  • Published: 

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Quality statement 5: Named healthcare professional

Quality statement

People diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations have a named healthcare professional who coordinates their care.

Rationale

Rare diseases often affect multiple parts of the body and involve multiple specialities and multidisciplinary teams. Having a named healthcare professional can help ensure care and support is coordinated and that the person can access relevant healthcare professionals, as needed.

Quality measures

The following measures may be useful to support assurance and improvement. They are examples of how the statement could be measured but may require adaption depending on local, regional and national commissioning arrangements.

Structure

Evidence of agreed specifications of the role and functions of named healthcare professionals for people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations.

Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.

Process

a) Proportion of people diagnosed with a rare disease who have a named healthcare professional.

Numerator – the number in the denominator who have a named healthcare professional.

Denominator – the number of people diagnosed with a rare disease.

Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.

b) Proportion of people with a suspected rare disease that remains undiagnosed after diagnostic investigations who have a named healthcare professional.

Numerator – the number in the denominator who have a named healthcare professional.

Denominator – the number of people with a suspected rare disease that remains undiagnosed after diagnostic investigations.

Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.

What the quality statement means for different audiences

Service providers (such as specialist centres) agree a specification for the role and function of named healthcare professionals to coordinate care for people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations.

Healthcare professionals (such as GPs, specialists and allied health professionals) ensure that they know who the named healthcare professional is for people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations and share information with them. If they are assigned as a named healthcare professional, they ensure that they carry out the role in accordance with the locally agreed specification.

Commissioners ensure that the services they commission to support people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations have local agreement on the role and responsibilities of named healthcare professionals to coordinate care.

People diagnosed with a rare disease or with a suspected rare disease that has not yet been formally diagnosed are assigned a named healthcare professional. This person will support them to manage their condition, coordinate care, navigate the various services and ensure regular reviews of their care take place. Family members and carers are also provided with the contact details as appropriate.

Definitions of terms used in this quality statement

Named healthcare professional

A named professional with appropriate skills and knowledge who becomes familiar with the person and coordinates care and 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 the person's support network to contribute, including family, carers, independent advocates and practitioners from all services that support the person

  • 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.

[Adapted from NICE's quality standard on learning disability: behaviour that challenges (2015, updated 2019), statement 4]