South Wales Huntington's Disease Service
The South Wales Huntington's Disease service offers an essential lifeline to patients who carry the HD gene and their families.
The service, led by Professor Anne Rosser, aims to:
- deliver a multidisciplinary service for people who are affected by Huntington’s Disease across South Wales
- liaise with local services for patients
- inform and support HD patients and their families, ensuring effective coordination of care
- educate and advise professionals caring for HD families
- provide ongoing support regarding advanced care planning and to meet palliative care needs.
Patients using the service range from those who are gene positive and asymptomatic to patients with advanced and end-stage disease, and those cared for in a nursing home setting.
Collaborative working
The service is currently supported by a collaborative arrangement between Cardiff and Vale University Health Board, Cardiff University and the Huntington’s Disease Association (HDA).
The following staff are regularly engaged in the service:
- Professor Anne Rosser (Consultant Neurologist)
- Dr Thomas Massey (Neurology Specialist Registrar)
- Rebecca Cousins (Research Nurse)
- Catherine Clenaghan (HD Nurse Specialist)
- Professor Monica Busse (Senior Lecturer and Physiotherapist)
- Kay Holmes (Huntington’s Disease Association Advisor).