What are specialised services?

Specialised services support people with a range of rare and complex conditions. They often involve treatments provided to patients with rare cancers, genetic disorders or who require complex medical or surgical conditions. They deliver cutting-edge care and can act as a catalyst for innovation, supporting pioneering clinical practice in the NHS. There are currently 150 specialised services commissioned by NHS England covering a diverse range of distinct and complex conditions. In 2022/23 the planned spend for specialised services is £22.9 billion. 

Specialised services are not available in every local hospital because they are often required to be delivered by specialist teams of doctors, nurses and other health professionals who have the necessary skills and experience. 

Most specialised services only form part of a patient’s care and treatment pathway. For example, chemotherapy is a specialised service which is provided by most acute hospitals, but patients will also access care from other health services. Some highly specialised services, such as those for very rare diseases, are only provided at a few expert centres across the country, these services will deliver most of their patients’ care. Find out more about specialised services.

How are specialised services commissioned?

The Health and Care Act 2022, established 42 integrated care boards (ICBs) in England in July 2022. These are statutory bodies bringing together local health and care organisations to improve population health by taking on the responsibility for the design and delivery of health and care services across their geographical footprint.

In May 2022, a roadmap set out how the commissioning model for specialised services will evolve over the coming years and to see which services are suitable and ready to be delegated to ICBs. This commissioning model provides ICBs with flexibility to meet the needs of local people who use specialised services, whilst keeping the quality improvement and reduced variation from NHS England’s commissioning model.

• The plans set out in the roadmap were approved by the NHS England Board in February 2023. These are summarised in the February 2023 Board paper 7, annex A. As a result, from April 2023, 59 specialised services which were deemed ready and suitable for greater integrated care system (ICS) leadership are now being commissioned jointly by NHS England and ICBs across nine regional groupings. The intention is that subject to further Board approval during 2023, these services will then be fully delegated to ICBs to commission from April 2024. You can read more about this in the Board paper above.
• A number of specialised services, including all highly specialised services were deemed to be not suitable or ready for delegation by the Board at this time.

All specialised services, whether delegated or not, will continue to be subject to consistent national service specifications and evidence-based policies, so that patients have the same access to services wherever they live. NHS England will maintain, monitor, and assure these standards and remain accountable for all delegated specialised services as the national commissioner.

How are clinical policies and service specifications developed?

NHS England develops clinical policies, which define who will receive access to a service, drug or technology and service specifications, which define the core requirements of that service and the quality standards expected.

Service development has three phases:

1. Clinical build – specialised commissioning clinical reference groups (CRGs), formed of specialised clinicians, commissioners, patients who are experts by experience and public health representatives, oversee the development of new or updated clinical commissioning policies and services specifications.
2. Impact analysis – the financial and operational impacts of what is set out in the policy or specification are identified and tested by stakeholders such as patients, specialists and voluntary sector organisations, and sometimes by public consultation.
3. Decision – The decision on policies and service specifications is based on clinical benefit if the policy/service specification proposition is cost-neutral or cost-saving. For those that require additional funding, policy propositions are assessed on their likely relative clinical benefit and value for money by the Clinical Priorities Advisory Group (CPAG). Once a year, NHS England carry out a relative prioritisation process to determine which services will be routinely commissioned.

Find out more about our service development process.

How we involve patients and the public

Under Section 13Q of the National Health Service Act 2006, the NHS has a duty to involve patients and the public. Our Patient and public participation policy outlines how we involve patients and the public at each stage of the commissioning process and how this is embedded at each layer of the governance for specialised commissioning. Our process for assessing whether the legal duty to involve applies is covered by our Statutory guidance

Equality and health inequalities

When designing and commissioning services, NHS England has a duty to ensure that all people are treated fairly and that as an organisation we are meeting the legal duties around equalities and health inequalities under the Equality Act 2010 and the Health and Social Care Act 2012.

We do this by making sure a diverse range of people are involved in our commissioning activities. Actively seeking and understanding the views of individuals with lived experience helps us to address health inequalities.

Commissioners must complete an equality and health inequalities impact assessment when clinical policies and service specifications are developed and revised. This helps us identify people who experience the greatest health inequalities, including socio-economic groups and those people with protected characteristics under the Equality Act 2010 who may be affected by a particular plan or decision.   When we update our clinical policies and service specifications, we carry out stakeholder engagement and share these equality and health inequalities impact assessments so that patients and the public can feedback to us.

The Equality Act 2010 prohibits unlawful discrimination in the provision of services on the grounds of protected characteristics and requires public sector organisations to have ‘due regard’ to the need to:    

• eliminate unlawful discrimination, harassment and victimisation and other conduct prohibited by the Act 
• advance equality of opportunity between people who share a protected characteristic and those who do not 
• and foster good relations between people who share a protected characteristic and those who do not. 

Adherence to the Working in partnership with people and communities statutory guidance will be an important part of meeting the equality duty. Annex B.1 contains further information and guidance on our legal involvement duties. 

Specialised commissioning governance

Public and patient voices are at the centre of shaping our healthcare services and are now included at almost every level of governance for specialised commissioning. Patient and public voice partners (PPVs) and people with lived experience play a crucial role in the governance of specialised services. People are recruited to defined PPV roles throughout our boards, committees and groups to ensure that the views of patients, carers and the public are at the heart of all we do and that our decisions are informed by those that use and care about our services.

PPV Partner roles are advertised on our involvement webpage.

Please register as a stakeholder on NHS England – Citizen Space if you’d like to receive updates on any areas these areas of our work.

We have a dedicated Engagement team in specialised commissioning who oversee the recruitment, training and development of PPV partners involved in these boards, groups and committees, as follows:

Specialised commissioning, Health and Justice, Armed Forces Clinical Reference Group (CRG)

Delegated and national commissioning groups have two PPV partners.

Patient and Public Voice Assurance Group (PPVAG)

The PPVAG provides assurance on the overall approach to engagement for specialised services and its members act as a ‘critical friend’ to NHS England. They play an important role in escalating concerns and issues from PPV partners involved in specialised commissioning. PPVAG has an independent chair, six independent members and 12 representatives from specialised commissioning programmes of care and from key groups and committees within the specialised commissioning governance structure.

Rare Diseases Advisory Group (RDAG)

The RDAG makes recommendations on developing and implementing the strategy for rare diseases and highly specialised services and to make recommendations to Clinical Priorities Advisory Group (CPAG)  about how highly specialised services should be commissioned. There are four PPV partners, who have an advisory role and constructively challenge, influence and help RDAG develop strategies in respect of complex clinical prioritisations. This includes recommending which expert centres should be nominated (or should no longer be nominated) to deliver highly specialised services.

Clinical Priorities Advisory Group (CPAG) 

The CPAG makes recommendations on NHS England’s approach to commissioning services, treatments and technologies, and considers which of these should be prioritised for investment. CPAG has an independent chair and four independent members who have an advisory role and constructively challenge, influence and help CPAG to make decisions that reflect the patient and public perspective.

Individual Funding Request Panel

Where a treatment or service is not routinely offered by the NHS, a healthcare professional may submit an individual funding request (IFR) to NHS England, and decisions on the requests are made by an expert IFR panel. The IFR Panel has an independent chair and up to four independent PPV members who champion a public, service user, patient, carer or family viewpoint, ensuring that patient and public needs are considered when decisions are made.

Future commissioning model programme (FCMP) oversight group

This group oversees the development and implementation of the new model of commissioning specialised services, detailing how and when the commissioning responsibility of specialised services could be delegated to local systems. There is one independent PPV, who is the Chair of PPVAG, and ensures that these plans consider the patient and public viewpoint as well as ensuring that the programme clearly communicates plans and involves the public where necessary.

Specialised commissioning, health and justice, and armed forces

Quality and governance group

The specialised commissioning, Health and Justice, and Armed Forces (SCHJAF) Quality and Governance Group provides a forum for bringing together both national and regional quality representatives to share insight and intelligence in relation to quality concerns and risks.

The SCHJAF Quality and Governance Group provide assurance to National Commissioned Group (NCG), Delegated Commissioning Group (DCG) and Executive Quality Group (EQG) that there is an effective system of quality governance and internal control across nationally and regionally commissioned specialised services that enables the delivery of sustainable, high quality of care. There are two PPV partners offering patient and public perspective and oversight to the group.

National Programmes of Care

There are national National Programmes of Care (PoC) for cancer, mental health, internal medicine, blood and infection, trauma, women and children. Each PoC has a Board that oversees the commissioning of specialised services to provide leadership and oversight of the development and delivery of a comprehensive work programme. The board is responsible for ensuring the programme demonstrates improvements in quality, equity, value and outcomes. There are two PPV partners on each of these PoC who champion a public, patient, carer or family viewpoint, ensuring patient and public needs are met through the outcomes of the programme.

Genomics Clinical Programme

This clinical reference group (CRG) supports implementation of the NHS Genomic Medicine Service. There are two PPV partners on the Genomics CRG who champion a public, patient, carer or family viewpoint, ensuring patient and public needs are met through the outcomes of the programme.

Gender Dysphoria Clinical Programme

The Gender Dysphoria Clinical Programme Board is responsible for leading the future delivery and configuration of specialised services for people with gender dysphoria across England.

Our 5 PPV partners bring important views, perspective and challenge to the Board. This role is essential in championing a service user, patient, carer or family viewpoint, ensuring that their needs are met through the outcomes of the programme.  

Clinical reference groups

Clinical reference groups (CRGs) provide expert clinical advice and leadership on specialised services for a group of conditions or treatments. CRGs with the support of working groups lead on the development of clinical policies, service specifications and many other aspects of the clinical commissioning of services. 

There are 38 CRGs across specialised commissioning, these are split into 3 categories:

• Transform – where the service is a major priority area with a transformation programme in place. There are 26 PPV partners across these programmes.
• Lead and inform – where the national service agenda requires it to be more active, with a full work programme agreed via the PoC. There are 20 PPV partners across these programmes.
• Respond and advise – no agreed active programme of work for the CRG. These CRGs will be led by a national clinical lead who will be responsive to requests from expert advice and will support delivery of the PoC work programme. There are 45 PPV partners across all these areas.

PPV partners provide a crucial advisory role and help to constructively challenge, influence and help the CRG develop strategies in respect of the CRGs work programme.

Formal PPV partner roles are not the only way in which people can become involved in our work. All change programmes or transformation work will be supported by the Engagement team in developing a plan to look at how people can shape our plans and influence recommendations and decision making.

Patient and public involvement in the development of clinical policies and service specifications

Working groups

Clinical reference groups (CRGs) have dedicated working groups that will inform clinical commissioning policy and service specification development. These groups may have patient and public voice (PPV) representation to ensure that patient insight and experiences relevant to the clinical policy area are represented. The PPV representation could be either from people with lived experience of the condition or treatment or people from a patient group who can bring a wider patient perspective and help identify relevant stakeholder groups for further patient and public engagement.

Working groups may also consider any direct engagement that would benefit the policy or service specification during its early development, to ensure relevant patient insight informs the work at this stage. This may include working with charities and patient groups to access and involve a wider range of people with relevant lived experience.

Specialised commissioning registered stakeholder lists

PPV partners involved in our governance is complemented by engagement with wider stakeholders for each CRG, using stakeholder lists. These lists are compiled through a stakeholder registration process that is open to all interested stakeholders so they can be kept informed of relevant news and opportunities to be involved, for example, notification of public consultation, invitation to events. Stakeholders on these lists include patients, carers, clinicians, charities, patient groups, professional bodies, providers, industry and members of the public.

The registered stakeholder lists are central in the development of clinical policies and service specifications, as they are all required to undergo a minimum of two weeks of stakeholder testing. Commissioners and working group members review the stakeholder lists to identify any gaps before polices and specifications are shared. Missing organisations can then be invited to join the registered stakeholder lists and give feedback on draft clinical policies and service specifications.

Stakeholder testing of clinical policies and service specifications

Stakeholder testing is led by the commissioning managers, with support and guidance from the specialised commissioning engagement team. Testing draft clinical policies and service specifications with stakeholders is particularly important when there may be contentious issues and differences of opinion which need to be explored further with a range of stakeholders. This stage is also used to explore whether there are any perceived negative impacts, or equalities considerations that might not have been take into account.

The findings from stakeholder testing are analysed and a report is then shared with the relevant working group and clinical reference group. The next stage will be to decide if any further patient and public engagement is needed. A 13Q assessment – explained below – will help support this decision.

Assurance process for patient and public involvement

Specialised commissioning 13Q assessment process

NHS England, as accountable commissioners, have a legal duty to involve patients and the public in service development (section 13Q of the Health and Care Act, 2006 section 13Q of the Health and Care Act, 2006). A 13Q assessment helps commissioners identify if there is a need for patient and public participation, and if it is required, help them to plan a level of participation which is ‘fair and proportionate’ to the circumstances.

Commissioners complete a 13Q assessment form, with the support of the specialised commissioning engagement team. The form requests commissioners to state if a proposal presents a material change in how services could be delivered or accessed and how these changes might impact patients. It also requires commissioners to detail any stakeholder engagement that has taken place and how equality issues have or will be addressed.

The 13Q is assessed to decide there is a need for further patient and public involvement. For example:

• 30-day public consultation – this would occur if there are significant changes proposed to services which are broadly supported by stakeholders through prior engagement.
• 60-day public consultation – this would occur if there are significant changes with some contentious aspects.
• 90-day consultation – this would occur if the proposed activity is highly contentious, impacting on several stakeholders, is causing high levels of dissent, has financial implications or has a high media or political profile.

For clinical policies, there are three likely outcomes when considering further need for patient and public involvement:

• No further involvement required – when a proposal offers a clear and positive impact on patient treatment, for example, making a new treatment available, widening the range of treatment without impacting current care/patient choice.
• Further involvement needed – when there are complications or concerns raised about the potential impact on patients, for example, current care/patient choice.
• Further involvement needed – when there is a proposal to not routinely commission or to decommission a current treatment.

For each of these outcomes, assurance is provided by the specialised commissioning engagement team and the Patient and Public Voice Assurance Group.

For clinical polices that offer a clear and positive impact on patient treatment, and it is felt no further public consultation is required, this decision is approved by the Engagement team and Chair of PPVAG.

For clinical policies that need further patient and public involvement, PPVAG members will assure whether plans for this are fair and proportionate:

• Fully assure – the plan is of a high quality and considers the specific needs of the target group.
• Assure with recommendations – there are suggested areas for improvement or other areas for consideration which should be implemented prior to the work taking place.
• Not assure – the plan is not ‘fit for purpose’ and requires further review and revision before being re-presented at a future Assurance Group for further consideration.

The specialised commissioning communications and engagement team lead on strategic communications and stakeholder engagement within specialised commissioning, and provide support and advice to commissioners on how to involve patients and the public in their work – for example, helping colleagues plan and deliver engagement and consultation, events, stakeholder briefings.

Reporting of patient and public involvement

Patient and Public Involvement is monitored and recorded centrally by NHS England through the 13Q reporting system with engagement leads in NHS regions providing a six monthly 13Q report to the central public participation team. Within integrated care boards (ICB), patient and public involvement activity is reported to and via the engagement lead within that ICB.

For members of the public who work with the NHS in patient and public voice (PPV) partner roles, their involvement is reported through an annual PPV partners and PPV chairs survey which is also led by the Public Participation team who can be contacted at engagement.england@nhs.net  

Publication reference: PRN00428

Version 2 – October 2023