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 2019

This document provides key information about highly specialised services in 2019.

In summary, the information comprises:

  • a description of each service
  • a list of the expert centres that deliver the service
  • NHS England’s total expenditure for each service
  • a measure of the activity that each service undertakes (patient numbers fewer than 30 are not included because of the risk of identifying individual patients)
  • 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 in relation to service innovation, improvement and listening to and acting on patient feedback.

Access previous year’s editions below:

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.

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.

This Progress Report on the Implementation Plan outlines the headway made towards our objectives so far.

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 Policy Board is tasked with monitoring the implementation of the UK Strategy for Rare Diseases and the two reports of its progress can on the GOV.UK website.

UK Rare Diseases Framework

The UK Rare Diseases Framework was published by the Department of Health and Social Care in January 2021 with the aim of delivering improved care and support for people living with a rare disease, their families and carers.

The Framework involves all four of the UK Nations developing their own Action Plan to deliver on four key priorities using five underlying themes:

The four priorities are:

  • Helping patients get a final diagnosis faster
  • Increasing awareness of rare diseases among healthcare professionals
  • Better coordination of care
  • Improving access to specialist care, treatments and drugs

The five underpinning themes being considered when delivering on the four priorities are:

  • Patient voice – placing this at the heart of everything
  • National and international collaboration
  • Pioneering research
  • Digital, data and technology – harnessing this to help deliver on the four priorities
  • Wider policy alignment – ensuring mental health support, social care and other services are there to support patients

The Action Plans will be shared later this year.

You can read the full Framework on the GOV.UK website.