 
 Society for Mucopolysaccharide © 2009
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  Clinical management
Clinical Management of MPS and related diseasesThe Society continues to work collaboratively with the lead specialist centres in MPS and LSD’s. Until 2004 Mucopolysaccharide and related diseases were managed at a variety of District General Hospitals as well as recognised specialist centres in England. This resulted in a significant variation in quality of care and considerable “postcode prescribing” for new therapies. In 2004 the MPS Society initiated the process that led to the 50 lysosomal storage diseases (LSDs), which includes the 23 MPS and related diseases, being managed nationally in England by the National Specialist Commissioning Group (NCG). This designation changed almost overnight the patient’s right to be assessed and managed clinically at a recognised LSD specialist centre for children or adults and, where therapy is available to treat their disease, to be assessed against appropriate clinical guidelines. These guidelines are available on the NCG website. The NCG LSD specialist centres are: Paediatric Great Ormond Street Hospital, London Birmingham Children’s Hospital Manchester Children’s Hospital Addenbrookes Hospital, Cambridge Adult London National Hospital, London Addenbrookes Hospital, Cambridge Wales, Scotland and Northern Ireland have designated specialist hospitals for managing metabolic diseases but MPS patients do not have the benefits of the NCG model and access to treatment in the same way as England. This does mean some of our members in these countries are denied treatment or have suffered delays even when they meet the NCG treatment guidelines. The designated specialist hospitals are: Principles underpinning the advocacy support service Areas of support provided by the advocacy team Palliative care, pre/post bereavement support Advocacy Case Studies |
