 
 Society for Mucopolysaccharide © 2009
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  MPS clinics
MPS regional clinic programmeThe MPS regional clinic programme involves centres including Manchester, Belfast, Birmingham, Bristol, Cardiff and Newcastle. The programme aims to enable individuals affected by MPS and Related Diseases to access a consultation with a tertiary centre consultant without having long distances to travel to the NCG (NSCAG) designated clinical centre of excellence. The clinics also aim to increase expertise in the regional centres on MPS and related diseases in the clinical management of those affected. The MPS Society facilitates and supports the regional clinic programme by arranging and co-ordinating dates of the annual programme and funding the NCG centre doctors' travel and subsistence costs to the regional centres. Specific arrangements for each clinic and for organising appointments differ for each of the centres. At least one member of the Society’s advocacy support team meets individuals and families face to face to offer individual advocacy support. Each individual regional clinic is evaluated through the sending and receiving of evaluation forms to each individual and family who attend. These are collected and the feedback taken into account. MPS Clinics 2010MPS I Bone Marrow Transplant clinic (under 6 years): 15 October MPS I Bone Marrow Transplant clinic (over 6 years): 22 October Birmingham clinic: 26 November Northern Ireland clinic: November (tbc) Cardiff clinic: December (tbc) Principles underpinning the advocacy support service Areas of support provided by the advocacy team Palliative care, pre/post bereavement support Advocacy Case Studies |
