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 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) 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A key focus for its work is the delivery of NHS England’s commitments as set out in the Rare Diseases Framework, which superseded the UK strategy for rare diseases.
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.
You can read the full Framework on the GOV.UK website.
UK strategy for rare diseases
The UK strategy for rare diseases was published by the Department of Health in November 2013. The strategy expired at the end of 2020 and in January 2021 was replaced by the UK Rare Diseases Framework.
The strategy contained a total of 51 commitments which all four countries agreed to achieve by 2020. The strategy was the first of its kind, aiming to help build an understanding of rare diseases and boost research in this important area of healthcare.
All four devolved nations responded with their plans for implementation.
This is the Implementation Plan, which set out NHS England’s delivery contribution to the UK Strategy for Rare Diseases.
The Implementation Plan was developed in conjunction with the Department of Health’s overall plan, which set 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 outlined the headway made towards objectives.