Central funding for therapy as well as for Gaucher centres in UK


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The Dept of Health announced on 28 October 2004 that for two years, from April 2005 to March 2007, Cerezyme and Zavesca prescribed for patients with Gauchers disease will be centrally funded by the Dept of Health under the auspices of the National Specialised Commissioning Advisory Group (NSCAG). Previously the cost of the two therapies was paid for by patients' local health authority or Primary Care Trust.


In addition two more centres will be nationally designated and funded by the Dept of Health to provide a diagnostic and assessment service for patients with lysosomal storage disorders.

Patients with Gaucher disease will continue to attend their current centre and see their regular doctor.

The six NHS Trust hospitals concerned are: Great Ormond Street, Royal Manchester Children's, Royal Free, Addenbrooke's, University College London and Hope Hospital Manchester.

Aims of NSCAG

NSCAG said in its annual report for 2003-2004: 'Our aim is to help patients who need access to treatment or investigation of a very specialised nature, or who have a very rare condition, while seeking to ensure that the highest possible standards of care can be delivered within available resources.'

NSCAG was set up in 1996 to advise ministers on which NHS services are best commissioned centrally, rather than locally, for reasons of clinical effectiveness, economic viability and equity of access.

Designated services, identified and funded centrally by NSCAG, are generally those which:

The report states: 'When new services are designated, existing spend within the NHS is transferred and, where required, NSCAG bids for additional central funding to support needed service developments.'

In 1997 NSCAG designated central funding for three centres for the assessment and management of Gaucher disease: Addenbrooke's Hospital, Great Ormond Street Hospital for Children,; and the Royal Manchester Children's Hospital. A year later the Royal Free Hospital became the second centre for adults to be designated. Collaboration The Chairman and Executive Director of the Gauchers Association attend regular meetings held by NSCAG to discuss the Gaucher disease service.


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Source: Gauchers News May 2005.
Copyright © Gauchers Association 2005.