Key aims of support
The key aims of the Individual Advocacy Support Service are:
- To ensure the assessment and provision of services by other agencies are informed by a needs-led approach, based on an accurate understanding of the needs of individuals diagnosed with an MPS or related disease, their families and carers. This involves when required undertaking a full needs assessment, which includes, as appropriate, working in partnership with the individual and their family.
- To ensure that the assessment and provision of services uphold the rights of MPS Society members and their families. This includes rights to needs-led support as detailed in all current relevant legislation, including that delivered by health and social services.
- To provide expert information and advice to MPS sufferers, their families and carers on issues relating to the non-clinical management of individuals affected by MPS and related diseases.
- To provide an active listening service to enable individual sufferers, their families and carers to speak about, reflect on and make fully informed decisions in respect of the meeting of their needs. This service includes an out of hours service, which operates every day of the year.
- By working in partnership with individuals and families and imparting skills and knowledge to promote self advocacy.
Principles underpinning the advocacy support service
Areas of support provided by the advocacy team
MPS regional clinic programme
Support following diagnosis
Clinical management
Palliative care, pre/post bereavement support
Advocacy Case Studies
