We would love to chat so please request a callback from our expert team.  Alternatively, our lines are open Mon-Fri 8am-7pm, Sat-Sun 9am-5.30pm.

Helping Hands Logo
Find your branch
CQC & CIW Regulated
Receive care in 24 hours
4.5 Star Rating
Rated Excellent on
Trustpilot
Industry leading carer training

Huntington’s: meet Sue

Huntington’s: meet Sue

How we're supporting Sue with outcome-based care at home

Sue is from Abingdon in Oxfordshire and is living with Huntington’s disease and diverticulitis. Oxfordshire Clinical Commissioning Group (CCG) contacted us back in 2013 to see if we could support Sue to continue living at home. We’ve been supporting her with both live-in and domiciliary care ever since.

Before coming to Helping Hands, it was becoming apparent that Sue’s existing care plan was not sufficient to cope with the demands that were being presented. Given our history of supporting and enabling those with complex neurological conditions to remain in their preferred home environment, Oxfordshire CCG contacted us to manage Sue’s care plan.

A carer in a purple uniform smiles whilst making a bed, as an older woman in a dressing gown stands nearby watching and smiling in a cosy, warmly lit room.

Flexible solutions for Huntington's care at home

Our initial solution was to start with a single live-in carer. However, we quickly transitioned to two live-in carers in response to Sue’s progressive decline and in order to take the pressure off her family.

Today, one of Sue’s original carers is still working alongside an exceptional rotation of permanent carers who provide Sue with the support she needs as her condition has declined.

Delivering outcome-based care to Sue and her family relies on her carers recognising and managing her changing physical, emotional and cognitive needs.

Although her ability to transfer independently was initially good, the extent of her choreic movements meant there was a heightened risk of falls. Coupled with a deterioration of her condition, this has led to a regular review of Sue’s mobility and she is now transferred using full equipment that is required for safe transfers.

A smiling woman with curly hair, wearing a white shirt, stands in a kitchen slicing vegetables. Carrots, peppers, and greens are arranged on the counter in front of her.

Extra equipment and adaptations

We liaise directly with Sue’s occupational therapist to ensure we have the correct equipment and processes in place. Sue has so far been issued with a supportive symmetrikit chair and shower chair.

Sue’s choreic movement affects her ability to swallow. Therefore we have followed the recommendations of her speech and language therapist and work with Sue to plan a diet with the correct foods accompanied with thickened fluids and some supplement drinks. Her complex medication is administered through yoghurt.

A smiling man in a light purple uniform holds a milk bottle while opening a kitchen cupboard. A shopping bag sits on the counter behind him.

The importance of continuing to stay at home

By continuing to stay at home for as long as is physically possible, Sue is able to interact with her extended family. A regular routine is helping to alleviate her anxiety. This includes full personal care with a key focus on Sue’s hair, make-up and nails, and interacting with her favourite TV programmes.

We continue to directly manage Sue’s care. Our Regional Clinical team regularly reassesses her needs and the care plan in place, working closely with the health care manager from the commissioning continuing healthcare (CHC) team.

Huntington's care
A woman in a purple uniform hoovers a light-coloured carpet while an older woman sits on a beige sofa, smiling and knitting. The lounge has decorative cushions and framed wall art.

Other people are interested in…

We’re here seven days a week to talk through your home care needs and find the best option for you. Call 0333 060 5358 or request a callback and we will call you.

Two women stand by an open car boot, smiling as they hold reusable shopping bags filled with groceries, including flowers and a carton.
Live in care older version

Quality live in care at home, across England and Wales

Find out more
An elderly woman and a carer in a purple uniform walk arm-in-arm through a grassy field with dandelions. Both are smiling, and the background features a wooden fence and a cloudy sky.
Dementia care

Familiarity and a friendly face with dementia care

Find out more
A woman wearing glasses and a light purple uniform smiles whilst washing dishes in a bright kitchen.
Our carers

What makes our carers and support workers so special

Find out more