Supporting people in the early stages of Huntington's disease: Emma's story

20 July 2022

Photo of care home resident with two carers stood on a beach

Emma lives at Kingfisher View care home in Castleford. She has a diagnosis of Huntington’s disease which impacts her daily living. With 1:1 support from the Nurse-led team and input from the Activities Team at Kingfisher View, Emma enjoys living a fulfilled life that’s full of meaningful activities. She’s the life of the party and has enjoyed a holiday with support from the team.

Living with Huntington’s disease

Emma has a diagnosis of Huntington’s disease which impacts her daily life in a huge way, including her cognition, mobility, speech and swallowing. She’s no longer able to remain at home with her two young sons.

Emma was hospitalised under a section after care in her own home failed. When at home, she spent long periods of time in her flat and had altercations with people in the community around her money and forgetting to purchase items.

After being in hospital for a short period of time, she was soon ready to return to the community.

However, she refused to accept that she required any assistance or support, and felt that her condition had been created in order to keep her in hospital. All Emma wanted was to move back to her flat - the hospital environment was too much for her as she didn’t feel there was anything wrong.

Emma is only 38 and has lots of life left to live. She didn’t want to move into a ‘traditional’ nursing home and needed something a bit different.

A community-based home

Kingfisher View was able to offer Emma a placement in a self-contained flat, sharing with another person with Huntington’s disease.

Here, she has a full kitchen, lounge, bedroom and en-suite wet room which allows Emma her own space.

When Emma arrived at Kingfisher View, she declined support, reporting that she didn’t need it.

The flat environment enabled staff to maintain a low profile, often offering her something to eat or drink with minimal engagement, at Emma’s choice.

This has allowed Emma to grow and build trust with the team in her own time.

Trained Nurse-led teams

Emma is supported by a skilled clinical team with knowledge of Huntington’s disease and the skills to treat her physical care needs.

The team includes trained Health Care Assistants and Registered Nurses who are able to meet her current needs, but also recognise any changes, introducing additional equipment or professionals as needed.

Person-centred care

The high staffing levels at Kingfisher View enable the team to build trust with Emma and support her holistic needs. 

Emma has a great sense of humour and enjoys a laugh with others. She likes to speak about her sons.

Emma’s communication is limited with can lead to frustration. Staff sometimes need to ask again what Emma wants - they turn this into humor so Emma doesn’t get frustrated, as they recognise she responds to this best.

Emma is not a morning person and staff allow time for Emma to wake and then engage with her when she’s ready.

Staff look at various options to work with Emma to maintain her fine motor skills. They make this fun by doing activities such as shooting a water pistol at staff, making a coffee or pot noodle, dancing to 80’s music and making homemade pizzas.

Meaningful activities

The Activities Team and Health Care Assistants support Emma to live a varied life that’s full of fun.

When Emma moved to Kingfisher View, she didn’t want to take part in group activities or access the community.

Over time, Emma started to trust the team and ask for support – now, they help her to clean her room, get dressed and make food.

A few months later, Emma’s favourite activities include visiting the local town centre to have her nails or hair done, clothes shopping, and day trips out to places such as The Deep and the local petting zoo. She often goes to the shops to complete her shopping list, which usually consists of ice cream and cigarettes!

Communal activities

Kingfisher View offers communal activities and spaces outside of the self-contained flats, through which Emma has built relationships with her peers.

When she first moved to Kingfisher View, Emma enjoyed spending time on her own in the garden or reading her book.

Over time, she started to build friendships with other service users and chatting to staff.

Now, Emma loves joining in group meals, having a boogie at the disco and attending our special ‘bar nights’ where her favorite tipple is a gin and tonic or a Prosecco! These events are tailored for our service users and allow them to enjoy a drink in a safe manner that still feels like a night drinking with friends.

Emma has established relationships with Health Care Assistants of a similar age who feel like friends to her. This means that she gets all of the joy of a day out with the girls, despite the ‘limitations’ of her diagnosis.

A fulfilling life

The bespoke set up at Kingfisher View has given Emma a unique experience - she has developed trusting and lasting relationships in a place of safety, despite her condition progressing. It has also allowed Emma to come to terms with the changes she’s experienced without having to observe others with a similar condition decline in front of her.

Emma has continued to be the life and soul of the party. Having Huntington’s disease has not slowed her down one bit. She’s the joker of our service, loving nothing more than a water fight, scaring staff or playing practical jokes.

Emma has come to accept her diagnosis, not necessarily that she has Huntington’s disease but that her body is changing, her movements are at times involuntary and that she’s not as steady on her feet.

She has begun to recognise that she needs support from staff and is unable to care for her sons like she wants to. 

Along with the changes of her body movements and health needs, Emma has liaised with the nursing staff and is now accepting of two health medications, which she consents to taking and which help to keep her condition as stable as possible.

Emma has regained some independence with her finances, being supported to use a contactless bank card so she can shop till she drops without ‘feeling like a baby’ (as she stated she felt like when staff used to handle her money).

Emma has a designated team of Family Liaison Workers who help her to maintain relationships with her family at her own pace.

Holidaying with the team

In June 2022, Emma enjoyed a holiday with two other service users. They enjoyed two nights in a lodge in Mablethorpe.

On arrival, Emma shared how ‘posh’ it was and presented as relaxed, chilling on the sofa with her leg crossed.

Whilst away, she went to the pub and enjoyed a meal out and a shandy with her peers. They visited the shop on site to choose ice cream, went for a walk on the beach and went shopping for a new handbag.

Whilst there, Emma said the only thing that she’d change is that she’d love for her sons to be there. The team supported Emma to write a letter to them to share her experiences, which she was happy with.

At the end of the holiday she said that she had a great time and the only thing she’d change is that she wanted to stay longer!

Find out more about our Huntington's disease care

Our specialist care homes provide specialist nursing care for people affected by Huntington’s disease who have complex physical disabilities and/or health needs.

If you're looking for support for someone living with Huntington's disease, contact our Referrals Team

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