1. Commissioning of Metabolic Services in England and the Role of the Metabolic Clinical Reference Group Joan Ward, Commissioning Manager, NHS England
12th October 2019

2. Content
Background to the commissioning of metabolic services in England
Role of the Clinical Reference group
CRG work programme
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3. Background to the commissioning of metabolic services in England
From 1991 Commissioner/ provider relationship came into being
Commissioning is the continual process of planning, agreeing and monitoring services. Commissioning is not one action but many, ranging from the health-needs assessment for a population, through the clinically based design of patient pathways, to service specification and contract negotiation or procurement, with continuous quality assessment.
There is no single geography across which all services should be commissioned: some local services can be designed and secured for a population of a few thousand, while for rare disorders, services need to be considered and secured nationally

4. Previous organisational structure
Primary Care Trusts were the main commissioning organisations. Some services were commissioned nationally, including some metabolic services for people with lysosomal storage disorders PCTs commissioned for geographical areas and for some less common and rare disease they combined commissioning leading to the development of Specialised Commissioning groups. What they commissioned varied across the country, some SCGs commissioned metabolic services, mainly for children. All the funding was the responsibility of PCTs
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5. 2013, last set of major NHS reforms in England
New arrangements
Clinical Commissioning Groups, commission 80% of NHS budget
NHS England, commissioning lead for England for all services, took on the responsibility of direct commissioning of specialised services.
Based on four principles
The number of individuals who require the provision of the service or facility;
The cost of providing the service or facility;
The number of persons able to provide the service or facility; and
The financial implications for Clinical Commissioning Groups (CCGs) if they were required to arrange for the provision of the service or facility
In practical terms, what was commissioned by Specialised Commissioning Groups transferred to NHS England
NHS England commissions about 150 services
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6. NHS England Specialised Commissioning
Separate directorate in NHS England, sits within the commercial team.
Organised into seven regions and a national team
Current structures
Specialised Commissioning and Health & Justice Strategy Group and Specialised Commissioning and Health & Justice Delivery Group (these groups have just been established following a reorganisation)
Clinical Priorities Advisory Group
Six National Programme of Care Boards
Each has an NPoC Board which coordinates and prioritises work across the services in that programme of care.
The six NPoCs are:
Internal medicine – digestion, renal, hepatobiliary and circulatory system
Cancer
Mental health
Trauma – traumatic injury, orthopaedics, head and neck and rehabilitation
Women and children – women and children, congenital and inherited diseases
Blood and infection – infection, immunity and haematology
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7. Women and Children Programme of Care
The role of the NPoC is to provide leadership and oversight of the development and delivery of a comprehensive work programme that achieves demonstrable improvements in the quality, equity, value and outcomes of commissioned specialised services.
The Women and Children NPoC covers services in women and children, congenital and inherited diseases. It consists of an NPoC Board , (currently under review) and Clinical Reference Groups (CRGs) as follows:
Specialised Surgery in Children (E02)
Paediatric Medicine (E03)
Paediatric Neurosciences (E04)
Congenital Heart Services (E05)
Metabolic Disorders (E06)
Paediatric Intensive Care (E07)
Neonatal Critical Care (E08)
Specialised Women’s Services (E09)
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8. Role of Clinical Reference Groups
CRGs provide clinical advice and leadership on the specialised services in the Women and Children’s NPoC. These groups of clinicians, commissioners, public health experts, patients and carers use their specific knowledge and expertise to advise NHS England on the best ways that specialised services should be provided.
CRGs lead on the development of clinical commissioning policies, service specifications and quality standards. They also provide advice on innovation, horizon scanning, service reviews and guide work to reduce variation and deliver increased value. CRGs, through their Patient and Public Voice (PPV) members, also help ensure that any changes to the commissioning of specialised services involve patients and the public.
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9. Metabolic Clinical Reference Group
Membership refreshed this year,
Work programme
Metabolic services in England Examination of Issues
Metabolic services drug formulary
Peer review Highly Specialised Services
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10. Metabolic Services Examination of Issues
Different commissioning arrangements for metabolic services across England
Some areas have more limited provision,
Particular challenges in relation to adult services
Transition is difficult
Ongoing problems with prescribing
Not all patients are seen in specialist centres
NHS England is looking into these issues, to try and decide the best way of addressing them
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11. National Drug Formulary for Inherited Metabolic Diseases (IMDs)
Major problem for a lot of people
Historically hospitals have started patients on treatment and GP’s have taken on the prescribing responsibility with advice from the specialist centres
These arrangements are under pressure
Reluctance of GP’s to prescribe for conditions they don’t fully understand
(Responsibility for prescribing between Primary & Secondary/Tertiary Care)
Hospitals are often far away making accessing prescription difficult
Hospitals aren’t funded to provide the medication long term
The CRG, with the British Inherited Disease Group (BIMDG) are developing a formulary which will set out the prescribing responsibilities of hospitals and GPs
NHS England will be asked to support this
CCGs will be asked to adopt this
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12. Any Questions
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