This Respond and Advise Clinical Reference Group (CRG) services relate to the treatment of patients with rare diseases or patients with specific common diseases who have complex needs or severe forms of the disease.

It is estimated that around 10% of patients requiring dermatology services (about 10,000 each year) need care from specialised dermatology centres.

Both adult and paediatric dermatology services are provided in local hospitals and deal with a wide range of conditions. Specialist adult dermatology services include the diagnosis, investigation and treatment of rare diseases and the management of severe diseases not suitable for, or not responding to, conventional treatment available in local dermatology departments. All dermatologists are trained in both adult and paediatric dermatology.

Paediatric dermatology services are usually provided by dermatologists in local hospitals often with support from paediatricians. Specialist paediatric dermatology services incorporate any skin condition affecting a child which a general dermatologist or paediatrician has been unable to diagnose or manage because it is atypical, severe, or complicated by other paediatric, medical or social factors.

Scope

This clinical reference group covers a wide range of services including:

• Services for people with severe forms of a disease including severe psoriasis and severe eczema
• Services for people with severe connective tissue disease
• Services for people with severe immune system related skin disease
• Services for people with severe genital skin disease
• Services for people with severe vasculitis
• Services for people with skin cancers
• Defined highly specialised services for very rare skin diseases.

Membership

• Chair: Tanya Bleiker
• Ian Wren, Lead Commissioner
• Stephen Keohane, Cancer Lead
• Lindsay Shaw, Paediatric Liaison
• Mandy Aldwin, Patient and Public Voice representative
• Brenda Allan, Patient and Public Voice representative

Affiliates

• Nick Levell, GIRFT lead
• Tania Von Hospenthal, British Association of Dermatologists

Products

A key part of the CRG’s work is the delivery of the ‘products’ of commissioning. These are the tools used by the 10 Hub Commissioning Teams to contract services on an annual basis.

Service specifications

Service specifications are important in clearly defining the standards of care expected from organisations funded by NHS England to provide specialised care. The specifications have been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe both core and developmental service standards. Core standards are those that all funded providers should be able to demonstrate, with developmental standards being those which may require further changes in practice over time to provide excellence in the field.

The following service specifications fall within the scope of this CRG:

• Epidermolysis bullosa service (all ages)
• Specialised dermatology services (adults and children)
• Stevens-Johnson syndrome and toxic epidermal necrolysis (all ages)

Policies

The following policies fall within the scope of this CRG.

Commissioned

• Rituximab for immunobullous disease
• Human normal immunoglobulin for treatment of scleromyxedema (adults)

Not routinely commissioned

• Infliximab for the treatment of hidradenitis suppurativa

Policy statements

• Allogenic Mesenchymal Stromal Cell Infusion Therapy for Children with Severe Generalised Recessive Dystrophic Epidermolysis Bullosa

Get involved

If you are interested in the work of the internal medicine NPOC or its CRGs, you can register as a stakeholder. For details on our latest consultations please visit NHS England » Consultations

Get in contact

For any questions or queries relating to the work of the internal medicine NPOC or any or its CRGs, please contact: england.npoc-internalmedicine@nhs.net