• 1: Home
• 2: MPS Diseases
• 3: Fabry Disease
• 4: Advocacy Support
  • 4.1: Aims
  • 4.2: Principles
  • 4.3: Areas of Support
  • 4.4: MPS clinics
  • 4.5: Support after diagnosis
  • 4.6: Clinical management
  • 4.7: Bereavement
  • 4.8: Case Studies
• 6: Fundraising
• 7: How Your Money Helps
• 8: Research
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• 10: Kids Section
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• 12: Childhood Wood
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• 30: Terms and Conditions

Palliative care, pre/post bereavement support

Services for children and young people with life-limiting conditions and who require palliative care varies from locality to locality. Although much has been done to educate service providers there are areas which are still considerably lacking the knowledge, expertise and resources required to carry out the services needed.

Having a dedicated worker with the specialised knowledge and understanding of these complex needs has allowed the Society to respond effectively to the needs of individuals and families.

Through our work it is evident that individuals and families feel confident knowing that they have a dedicated worker who can support them from diagnosis to bereavement. This is a critical area of work as these diseases are degenerative, complex and multi-organ in nature, causing continual changes to the affected individual’s physical and mental condition.

The Society continues to develop and review this service and is in the process of producing some fact sheets in this area of work. The MPS Society also offers bereaved families the opportunity to plant a tree in the Childhood Wood.

Key aims of support

Principles underpinning the advocacy support service

Areas of support provided by the advocacy team

MPS regional clinic programme

Support following diagnosis

Clinical management

Advocacy Case Studies