Highly specialised services

What are highly specialised services?

Highly specialised services are provided to a smaller number of patients compared to specialised services; usually no more than 500 patients per year. For this reason they are typically best delivered nationally through a very small number of centres of excellence. Examples of highly specialised services include liver transplant services, enzyme replacement therapy, and proton beam therapy for specific cancer treatments.

Rare Diseases Advisory Group (RDAG)

The Rare Diseases Advisory Group (RDAG) is responsible for making recommendations to NHS England and the devolved administrations of NHS Scotland, NHS Wales and NHS Northern Ireland on the development of services for people with rare diseases and highly specialised services.

RDAG makes recommendations to the Clinical Priorities Advisory Group (CPAG) about how highly specialised services should be commissioned. This includes recommending which expert centres should be nominated (or should no longer be nominated) to deliver highly specialised services.

A key focus for its work is the delivery of NHS England’s commitments as set out in the UK Strategy for Rare Diseases, which was published in November 2013.

Terms of reference

UK strategy for rare diseases

The UK strategy for rare diseases was published by the Department of Health in November 2013. The strategy contained a total of 51 commitments which all four countries have agreed to achieve by 2020. This is the first strategy of its kind, aiming to help build an understanding of rare diseases and boost research in this important area of healthcare.

The UK Strategy for Rare Diseases was published by the Department of Health in November 2013 and all four devolved nations responded with their plans for implementation.

The strategy contained a total of 51 commitments which all four countries have agreed to achieve by 2020.

This is the first strategy of its kind, aiming to help build an understanding of rare diseases and boost research in this important area of healthcare.

Details of how NHS England will plays its part in delivering commitments set out in the UK strategy for rare diseases can be found in the Statement of Intent.

Key elements of the strategy

  • Personal care plans for patients, bringing together health and care services, with more support for patients and their families
  • Support for specialist clinical centres offering better care and support
  • Better education and training for health professionals to help ensure earlier diagnosis and access to treatment
  • Promotion of the UK as a world leader in research and development in this field.

Rare Diseases Forum

The UK Rare Diseases Forum is tasked with monitoring the implementation of the UK Strategy for Rare Diseases. The first report on its progress was published in February 2016.