The Specialised Endocrinology Clinical Reference Group (CRG) had a very useful meeting at the Society for Endocrinology BES conference in Harrogate. CRG members Neil Gittoes and John Newell-Price, as well as Fausto Palazzo (Endocrine Surgeon, Imperial College London), talked about what we have been doing in the CRG to try and improve endocrine care up and down the country.

One important role for the CRG is to keep our community of endocrinologists properly informed and to provide the opportunity for feedback.

PEGVISOMANT AND PASIREOTIDE

Our several achievements include improving access to pegvisomant. This is undertaken through BlueTeq technology, and there are now 25 centres which can, subject to multidisciplinary team (MDT) approval, complete a form to access the drug. Responsibility for prescribing remains with the chair of the MDT. This is not arduous. A similar system is in place for pasireotide, but fewer centres have needed this and consequently around 10 have access to the BlueTeq technology.

PARATHYROID HORMONE AND CINACALCET

There is on-going discussion within NHS England with regard to parathyroid hormone and cinacalcet, parathyroid hormone being used for the treatment of osteoporosis and cinacalcet for exploration-negative persistent hypercalcaemia in primary hyperparathyroidism. NHS England currently pays for these, and an IFR (individual funding request) needs to be made for parathyroid hormone. This is not particularly satisfactory, because of the prevalence of the need for these two drugs, and so the CRG is working to improve the situation.

These processes have highlighted the importance of MDTs and their function in taking decisions in a multidisciplinary quorate manner before and after operation to predicate ongoing treatment through NHS England. In this respect, carefully developed and functional networks need to be in place.

SURGICAL OUTCOMES

It is also important that endocrinologists know the outcome for highly specialised surgery. Cure rates according to the internationally accepted criteria should be known in terms of microadenomas and macroadenomas causing acromegaly and Cushing’s. Likewise, outcomes in the fi eld of thyroid and parathyroid surgery should be known; these can be accessed on the British Association of Endocrine and Thyroid Surgeons (BAETS) website. Thus hypocalcaemia rates after thyroid surgery and failed exploration rates after parathyroid surgery should be known by endocrinologists referring patients. They are quite variable.

THE DASHBOARD

John Newell-Price is currently masterminding the dashboard. Entering data into this is important from the point of view of specialised centres, and there will be reiterations in the next few months so that some new criteria are developed. Your input will be very gratefully received. Please contact your regional members of the CRG (listed below).

It is really important that coding is attended to, particularly regarding surgical operations, and we are keen to have consultant input. We are working with neurosurgeon Nick Phillips who is a member of the Stereotactic Radiosurgery CRG to optimise coding. If you have any queries or comments, please get in touch at [email protected].

John Wass, Professor of Endocrinology, University of Oxford Chair, Specialised Endocrinology CRG

ENDOCRINOLOGIST MEMBERS OF CRG

Chair

John Wass

London

Simon Aylwin

Kevin Shotliff

Midlands & East

Neil Gittoes

Miles Levy

North

John Newell-Price

Peter Selby

South

Daniel Flanagan

Tristan Richardson