What is Specialised Healthcare?
SHCA members are charities and patient groups representing people in need of specialised services and care.
Specialised services support people with a wide range of rare or complex health conditions, for example rare cancers, genetic disorders or complex medical or surgical conditions. Hundreds of thousands of patients benefit from specialised services, and more than £20 billion is spent on specialised services every year in England (roughly 15% of the total NHS budget). Many people who access specialised services also require social care support.
There are around 150 specialised services. Some are relatively common, such as chemotherapy, radiotherapy and kidney dialysis; while others, for example services for rare neurodegenerative disorders or complex surgeries such as hand transplants, are provided only by one or a few hospitals across the country who have the right expertise and equipment.
Many specialised services are highly innovative and at the cutting edge of care in the NHS. For example, in 2019, NHS patients were among the first in the world to benefit from CAR-T, a new type of treatment for cancer.
Who is responsible for specialised services?
Currently, specialised services are commissioned (planned and paid for) by NHS England. This has been the case since the introduction of the Health and Social Care Act in 2012.
As part of the move to greater system working, NHS England is now developing plans for some specialised services to be commissioned at a more local level by Integrated Care Systems (ICSs) from April 2023. NHS England believes this will improve the quality of care that patients receive, help tackle health inequalities and make more effective use of NHS resources.
NHS England will still commission the most highly specialised services. Furthermore, all specialised services – whether commissioned nationally or locally – will continue to be subject to national standards developed by groups of clinicians, patients and other experts known as Clinical Reference Groups (CRGs).
NHS England published its Roadmap for integrating specialised services within Integrated Care Systems in May 2022. This document provides more detail on how specialised commissioning will evolve in the coming years and includes an initial list of services likely to be delegated to ICSs from April 2023. Further information on the delegation process is expected to be published later in 2022/23.
Patient engagement is vital in specialised services. Ensuring that the views of small numbers of patients living with a rare condition, who are often spread throughout the country, are heard and their views acted upon has been a longstanding challenge.
The SHCA continues to campaign for patient involvement in specialised services and commissioning, and actively engages with NHS England to ensure patient representation in decision making. The SHCA engages directly with NHS England on any issues arising. Patients and patient groups can also engage directly on service-specific policies through CRGs by registering as a stakeholder.