Unique Advocacy Service

The advocacy support service is flexible and a wide range of support is provided, led by members’ requests.

Disability Benefits – support completing Disability Living Allowance claim forms and with appeals and tribunals
Housing – achieving appropriate housing and home adaptations to enable the needs of an individual with an MPS and related disease to be met at home.
Education – reports written to inform statements of special educational needs. Upholding rights by attending reviews and transition meetings. Presentations to school staff and pupils on MPS diseases
Grants – completing application forms to trusts for specific items or holidays to benefit an MPS sufferer
Equipment – Information on equipment and support achieving appropriate equipment which meets the needs of individuals with an MPS or related disease
MPS Individual Careplans – These comprehensive documents written in partnership with the individual affected, their family, expert doctor and as appropriate local support staff, detail the needs of an individual diagnosed with an MPS disease.
Respite Care – Upholding rights to adequate respite care which meets the needs of all members of the family
Independent Living – Advice, information and support to both adults striving to or living independently as well as to other family members.
Access to Clinical Management and Treatment – General information on clinical management and treatment of MPS diseases. Information on NCG (NSCAG) designated centres for MPS and related diseases. Support at doctors appointments and to access a treatment if prescribed by an NCG centre doctor, but denied for other reasons such as PCT funding. Click here to find out more about MPS regional clinics.
Befriending Scheme – Links individuals and families, whether by diagnosis, age, geographical area, culture, etc., for mutual sharing and support. The scheme upholds data protection and confidentiality
Bereavement Support – Listening support, information and attendance at funerals. Support extends for as long as a family needs it.
For links to hospices click here.