Future NHS Funding for Gaucher Disease

The Future of the Advisory Group for national Specialised Services (AGNSS)

Future NHS Funding for Gaucher Disease and other Lysosomal Storage Disorders (LSDs) is unclear from April 2013 following the Secretary of State for Health, through the Health and Social Care Act 2012, plans to abolish AGNSS and transfer the commissioning of the LSD service to the NHS Commissioning Board.

Currently services in England for Lysosomal Storage Disorders (LSDs), of which Gauchers Disease is one, are funded centrally by the NHS and managed through an expert group, the Advisory Group for National Specialised Services (AGNSS). This ensures that all patients are treated at expert centres and funding for treatment is provided centrally wherever a patient lives in England, ensuring equal access to expert care and treatment for all.

The end of AGNSS from April 2013 will mean that there will no longer be ring fenced funding for the cost of Enzyme Replacement Therapy and funding for the clinical management and treatment of LSDs will need to be met from the £80 billion NHS Commissioning Board budget. Without ring fenced funding, LSDs will have to compete with other specialised services for funding.

The Gauchers Association, together with the patient organisations in England that represent patients with other LSDs, have been working together with doctors and the pharmaceutical companies to raise our concerns to Members of Parliament, the House of Lords, NHS staff and the media regarding the disbandment of AGNSS and stressing how important it is that the NHS Commissioning Board applies the same approach to the management of LSDs as AGNSS has done so successfully since 2005.

It is imperative that as much pressure is put on the Secretary of State for Health to review his plans and transfer the current AGNSS model and expertise into the new NHS Commissioning Board from April 2013.

During the week of the 13th August, the Association wrote to all its members who live in England urging them to write to their local MP asking for a meeting to discuss their worries, members were also encouraged to send copies of these letters to the Prime Minister and the Deputy Prime Minister.

If you would like more information on this please call us in the office in: 01453 549231