Huntington’s

Supporting individuals with Huntington’s Disease is a key part of our service portfolio. Care is provided from one of our 24 homes, located across the UK. Each home offering a warm and welcoming environment, alongside specialist staff and equipment, ensuring we meet the physical, emotional and practical needs of every resident.

Bespoke to the individual: No one diagnosis is the same, therefore we ensure all our services offer support built around the unique needs of each individual. Developed during the referral phase, and continually enhanced as we get to the know the person, the approach ensures we maximise quality of life at every step of their journey with us.

Working in partnership: A key element in this learning is our Multi-Disciplinary Team approach. We bring our expertise, alongside that of subject matter experts from local Community Neurology Teams, to continually review and monitoring progress. This work includes:

• Liaison with Speech and Language Therapists in support of ……
• Psychology input around resident behaviours and best-practice support approach
• Physio involvement in supporting ongoing mobility needs
• Involvement of Occupational Therapists
• Dietician advice and guidance around nutrition

Sitting alongside this is regular dialogue and communication with the individual Social Worker and family. This ongoing engagement ensuring all parties have a voice into the care and support provided and that the needs and interests of the resident are at the centre of every decision made.

Recognising the impact on families: We never lose sight of the impact Huntingdon’s has on the wider family. The degenerative nature of the disease, can place a huge burden on the individual’s loved ones and we recognise and understand our role in supporting people through this. The support itself is, like everything we do, unique to each family unit, but is likely to include:

• Taking the time to listen to their anxieties and emotions
• Enabling opportunities for ‘normal’ interaction e.g. trips out to places with sentimental value, so they can relive shared memories.
• Making sure they are fully updated with every aspect of the residents care and support.
• Working alongside their Social Worker to help families in understanding the difficult choices they may have to make. For example, Do Not Resuscitate (DNR) decisions.