 
 Society for Mucopolysaccharide © 2009
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  Advocacy Support
Introduction to AdvocacyThe MPS Society provides, through a team of skilled staff, an individual advocacy support service to its members. The service is flexible and a wide range of support is offered, led by members’ requests. Individuals affected by and families caring for a child or adult with an MPS or related disease experience specific problems and difficulties arising from the rarity of this group of diseases. This rarity means that the vast majority of social care and health professionals know very little if anything about the diseases and without such knowledge are unable to make accurate assessments to include both short and long term needs. Specific needs of MPS Society members may also be neglected by policies, which do not uphold these. The rights of sufferers and their families may also be neglected or undermined through policies and practices which do not address the multi-systemic nature of these diseases, sufferers of whom are increasingly living into adulthood and for whom standard provision is often unsuitable. The requirement for social services provision to meet clinical needs such as gastrostomy feeding and transition from family-centred children’s palliative care services to those provided for adults are two examples, which demonstrate these challenges. Principles underpinning the advocacy support service Areas of support provided by the advocacy team Palliative care, pre/post bereavement support Advocacy Case Studies |
