Highly specialised services

What are highly specialised services?

Within the list of approximately 150 specialised services, there are around 80 that are considered to be ‘highly’ specialised. In general, these services:

  • Are delivered in a small number of expert centres, usually no more than three, and which have been designated by NHS England
  • Have small caseloads of patients, usually no more than 500
  • Are clinically distinct
  • Benefit from national coordination.

See: list of NHS providers of highly specialised services.

Highly Specialised Services Report

This document provides key information about highly specialised services in 2020.

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) provides strategic clinical advice and clinical leadership 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 provides clinical advice to the Clinical Priorities Advisory Group (CPAG) on all proposed clinical commissioning policies for patients with rare diseases.

A key focus for its work is the delivery of NHS England’s commitments as set out in the Rare Diseases Framework, which superseded the UK strategy for rare diseases.

RDAG terms of reference

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 first England Rare Diseases Action Plan was published in 2022 and sets out how the priorities in the UK Rare Diseases Framework will be developed into tangible and concrete actions.

Building on the first set of actions, the second action plan was published in 2023 and outlines commitments for the coming year.

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