Sue’s story, living with Huntingdon’s

We were first approached to assess Sue by Oxfordshire Clinical Commissioning Group in September 2013, after it became apparent that her existing care plan was not sufficient to cope with the demands that were being presented as a result of her Huntington’s disease and diverticulitis. Helping Hands were approached given our history of supporting and enabling those with complex Neurological conditions to remain in their preferred home environment.

Sue is 65 and lives with her husband John and dog Bella in Abingdon, Oxfordshire. Our initial solution was to start with a single live in carer, however we quickly transitioned to a two live in carers as a response to her progressive decline and in order to take the pressure off John who is recovering after major surgery. Helping Hands also provides domiciliary care every day to support with carer breaks and work alongside a Young Dementia UK Support Worker once a week.

Delivering outcome based care to The Hannaby family relies on her carers recognising and managing her changing physical, emotional and cognitive needs. Although her ability to transfer independently is good the extent of her Choreic movement’s means there is a heightened risk of falls. Her mobility is therefore continually assessed by her care team with any transfers and movement requiring close supervision and gentle guidance. HH liaise directly with her Occupational Therapist to ensure we have the correct equipment and processes in place, currently Sue has been issued a supportive symmetrikit chair, walking belt, shower chair, grab rails ,bed lever as well as a wheelchair for when she is too tired or weak to stand.

Sue’s choreic movement affects her ability to swallow , therefore Helping Hands follow the recommendations of her Speech & Language Therapist and work with Sue and John to plan a soft diet with bite sized foods accompanied with normal fluids and some supplement drinks . Her complex medication is administered through yoghurt as recommended by her Neurology Nurse and the SALT.

The key outcome achieved is enabling Sue to remain at home for as long as is physically possible where she can interact with her extended family and be with her dog, Bella. We understand that we can alleviate her anxiety by enabling her routine, this includes full personal care with a key focus on her hair, make up and nails, interacting with her favourite programmes on TV, going to the gym and using the motoped, going into town and sometimes to the park with the dog. Our live in care also enables regular respite for John, who now is able to take extended breaks away to be with his own family and know that his wife is safe, comfortable and cared for.

Helping Hands continue to directly manage Sue’s care, Head of Clinical Care Melanie Dawson continues to regularly reassess needs and the care plan in place and works closely with the Health Care Manager from the commissioning CHC. The extended team includes Louise Williams (LCSM for Oxfordshire), Jayne Vale (Dementia Lead) and Kay Patrick, the Helping Hands Registered Manager for the additional domiciliary support in place.

Contact our team of experts today if you like Sue are living with Huntingdon’s and would like some additional support.

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