The medical care of people living with rare or complex rheumatic diseases is an important integral component of all rheumatology services, which NHS England has had responsibility for commissioning since April 2013. This work is overseen by the Clinical Reference Group (CRG), which is currently chaired by Dr Bridget Griffiths and covers:
services for people with autoimmune connective tissue diseases and vasculitis
- services for people with inherited disorders of connective tissue
- services for people with rare metabolic sclerosing and dysplastic bone diseases
- services for people with defined highly specialised services including Ehlers Danlos syndrome
There are a number of approved policies in place for the routine commissioning of drugs. Each policy has specific criteria which include requirements for the patient to be managed at, or in conjunction with, a specialised rheumatology centre and, where indicated in each policy, a requirement for enrolment (subject to consent) in the appropriate registry:
The use of biologics in SLE
There is an interim statement in place for the routine commissioning of rituximab in SLE, which was published in 2013 and remains current pending the analysis and publication of the BILAG Biologics Register data.
This highlights the essential importance of the rheumatology community enrolling patients in this register, as these data will be required to justify on going access to treatments, particularly outwith their licensed indications.
In June 2016, NICE published guidance for the use of belimumab for treating active autoantibody-positive SLE. It has taken extensive negotiation and discussion to reach this position, which the CRG has been very closely involved with. It is a significant success for patient care that we now have access to both biologic drugs. Please note the pathway which must be followed when considering the use of either belimumab or rituximab in SLE.
Future work of the Specialised Rheumatology CRG
The work of NHS England’s specialised services is becoming more focussed on patient outcomes, value for money and ‘getting it right first time’. The group will continue to develop commissioning policies for the use of drugs in patient cohorts that are included within the specialised rheumatology service specification, which is also currently being revised. The need for policies is informed from multiple sources including horizon scanning and individual funding requests (IFR) requests. If you have any suggestions for new policies that you think are required, please contact your regional CRG member or Bridget Griffiths.
The mandatory engagement by specialised centres with the specialised rheumatology quality dashboard is increasing. If your centre needs advice about how to register to do this, please contact Bridget Griffiths for an information pack.
Regional networks are key to facilitating the delivery of specialised service for our patients, including the implementation of commissioning policies. The CRG has worked hard over the last 3 years to try and create the commissioning opportunities and levers to enable this network development. A national CQUIN to support specialised rheumatology networks was designed and proposed to NHS England in 2015. This submission was successful, and is one of only a small number of Internal Medicine schemes that were approved for national adoption by NHS England from April 2016 onwards. This 3 year CQUIN is designed to provide support for network administration, data collection and specialised MDTs. Many centres are participating in this, with uptake increasing from April 2017. Network development is ongoing in many regions; please contact your regional member if you require an update on local progress.