It was with enormous relief and gratitude that the Department of Health have received Ministerial approval for an extension of the designation of the Lysosomal Storage Disease service as a national service to be commissioned by NCG for a further four years from April 2008 to March 2012 in England.

What does this mean to MPS Society members?

England
This means that every child or adult affected by a Mucopolysaccharide or related disease, including Fabry, continues to have a right to access their clinical care at an NCG centre of their choice. This does not mean you have to receive your care from the NCG centre nearest to your home or the one you were diagnosed at, if that is not your choice.

Scotland, Wales and Northern Ireland
In these countries of the United Kingdom there are differing arrangements for accessing expert clinical management for our members as well as local clinical management and shared care. In respect of accessing new therapies, at present Enzyme Replacement Therapy (ERT) funding is devolved to the individual countries.

If any member or their child finds themselves being denied access to ERT for Fabry, MPS I, MPS VI, or MPS II, please let us know. Please keep good records of communications, including a diary of hospital visits, meetings, email, telephone calls or letters, in relation to you or your child being denied access to ERT. The MPS Society will do all it can to support you in this matter and remember you have a right to a second opinion by a consultant experienced in MPS and related diseases.

Where are the NCG centres in England?
Paediatric: Great Ormond Street Children’s Hospital, London; Royal Manchester Children’s Hospital; Birmingham Children’s Hospital, Addenbrooke’s Hospital, Cambridge

Adult: National Hospital, Queen’s Square; Royal Free Hospital, London; Addenbrooke’s Hospital, Cambridge, Hope Hospital, Manchester

Click here for further information about NCG designated centres.

NCG contact details are as follows:
National Commissioning Group
Southside
105 Victoria Street
SW1E 6QT
Tel: 020 7932 3939