Areas of support provided by the advocacy team
At present the Society supports over 1200 individuals and families affected by MPS and related diseases. The amount of support and contact varies greatly and is dependent on the needs of the individual and their family. Below is a list of support provided by the advocacy team. Although this list is not exhaustive of the complex and continuing needs of our membership, it highlights the important role that advocacy still has in ensuring best practice and fair access to resources, support and information for all.
- Telephone Helpline – the Society provides an active listening service, information and support. This includes an out of hours service
- Disability Benefits – in understanding the complexities and difficulties individuals and families have in completing Disability Living Allowance claim forms, the Society continues to provide help and support in completing these forms and, where needed, will take a representative role in appeals and tribunals
- Housing and equipment – the Society continues to take a major role in supporting and advocating appropriate housing and home adaptations to enable the needs of an individual with an MPS or related disease to be met. Where requested, we can provide comprehensive and detailed housing reports based on individual need
- Education – the Society helps members to access appropriate education and adequate provision for its implementation. This is achieved through providing educational reports used to help inform and educate professionals, and in many instances, to inform Statements of Special Educational Need. Where requested, we also provide information days/talks to schools and relevant professionals
- Respite Care – the Society continues to work closely with a number of respite providers and, where appropriate can make individual referrals
- Independent Living/Transition – the Society provides advice, information and support through the transition from child to adult services. This could include access to independent living, learning to drive, further education, employment and relationships
- MPS Careplans – the Society undertakes a comprehensive assessment of the issues which need to be addressed when caring and providing support to a specific individual diagnosed with an MPS or related disease, as well as other family members through the writing of a careplan
- Befriender Service – the Society links individuals and families affected by MPS and related diseases for mutual benefit and support.
Key aims of support
Principles underpinning the advocacy support service
MPS regional clinic programme
Support following diagnosis
Clinical management
Palliative care, pre/post bereavement support
Advocacy Case Studies
