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.

Highly Specialised Services 2017

The primary purpose of this document is to provide key information about highly specialised services. In summary, the information comprises:

  • A description of the service
  • A list of the expert centres that deliver the service
  • NHS England’s total expenditure on the service
  • A measure of the activity that the service undertakes (Patients numbers fewer than 10 are not included because of the risk of identifying individual patients).
  • In some cases, clinical outcomes from the service
  • Information about geographical equity of access to the service

In a small number of cases, some additional information is provided about the service.

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 (document is available on our archived website), 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.

This is the Implementation Plan setting out NHS England’s delivery contribution to the UK Strategy for Rare Diseases.

The Plan sets out NHS England’s proposed actions against all of the commitments in the Strategy for which it has a lead responsibility. In particular, the Plan aims to address the following three objectives:

  • Facilitating earlier diagnosis and intervention.
  • Improving care coordination.
  • Promoting research.

Of particular note are the following key actions:

  • The continuing progress of the 100,000 Genomes Project and the concurrent development of a genomic testing strategy that will underpin the development of a new genomic medicine services for the NHS
  • The development of a set of criteria that will allow NHS England to hold providers to account for the way in which they treat patients with rare diseases via a rare disease ‘insert’ to the standard NHS Contract
  • The development of Rare Disease Collaborative Networks. These will be groups of providers who have a demonstrable research-active interest in a rare/very rare disease, with the aim of improving patient outcomes

This Plan should be read in conjunction with the Department of Health’s overall plan, which sets out the broader set of actions being taken by other parts of the health and care system against the commitments in the Strategy.

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.