Huntington’s Disease Awareness Month: Arlene’s journey

May is Huntington’s Disease Awareness Month – which is run by the Huntington’s Disease Association (HDA) to raise awareness of the disease and the effect that it has on people’s lives. This year’s focus is on the amazing work that Huntington’s disease carers do every day to empower people to live as fulfilled lives as possible.

This #HDAwarenessMonth, we’ve teamed up with resident, Arlene, who’s kindly shared her journey with us and is helping us to celebrate the wonderful work of her care team at Fairburn Mews, the only HDA Quality Assured care home in England. 

Arlene has lived at Fairburn Mews for three years, and, with the support of the fantastic care team, has tackled the challenges that her condition has brought so that she can continue to do the things that she loves.

Before moving into the Exemplar Health Care home, Arlene lived in her own flat and was supported by carers who came into her home. As her condition progressed, this placement broke down and that’s when Arlene got in touch with Fairburn Mews. Naturally, Arlene was reluctant about making the move from her own place to a nursing home, but with the kindness and support of our colleagues, she now feels right at home and is enjoying living a fulfilling life.

Arlene used to work as a Rape Crisis Counsellor with vulnerable women and uses her experience and knowledge to get involved in lots of aspects of the home. She’s an Infection Prevention and Control Champion for the home and attends networks, events and forums run by the local authority, and delivers training to our colleagues and other residents. She’s also involved in the activities programme at Fairburn Mews – and even has her own Activities Team t-shirt. Arlene loves talking to people about what they enjoy doing and works with the Activities Team to plan and run a meaningful activities programme for the home.

Arlene also has an active social life outside of the home. She’s a keen music fan and regularly attends concerts with our support staff, as well as holding record sessions in the home, and runs regular fundraising events for The Donkey Sanctuary, a charity close to her heart.

Getting involved in the home and maintaining an active social life has helped Arlene to adapt to the changes that Huntington’s Disease has brought to her life. She says: “Life is different now but I can still do the things that I want to do. I’m happy at Fairburn Mews now, I’m settled and it feels like home, the staff are brilliant.”

And Arlene’s Mum, Eileen, can see the difference that having a supportive environment has had: “Before Arlene came to Fairburn Mews she was emotionally distressed - but Arlene is in a much better place now. The staff at Fairburn Mews are very supportive to Arlene and myself, and have gone above and their duty - they are amazing.”

We’d like to say a big thank you to Arlene for sharing her story with us this #HDAwarenessMonth.

About Fairburn Mews and HDA Quality Assurance

In September 2019, Fairburn Mews received the very first certificate of quality assurance by the HDA and continues to be the only HDA quality assured care home in England. This mark of quality demonstrates that the home has achieved and maintained best practice standards in Hungtington’s disease care as set by the HDA. Read more about HDA Quality Assurance here.

Our 2.6 fundraising challenge for the Huntington’s Disease Association

Residents and colleagues at Fairburn Mews are taking part in a 2.6 challenge to fundraise for the HDA, a charity that’s close to their heart. They’re challenging themselves to walk 2.6km during #HDAwarenessMonth by doing laps of the care home – that’s 46 laps each!

The HDA has supported lots of our residents, families and colleagues, but like many charities, is facing challenges due to Coronavirus (COVID-19). If you’d like to make a donation, please visit our Go Fund Me page.

Supporting people with Huntington’s disease at Exemplar Health Care

Huntington’s disease is a complex illness that requires specialist support. That’s why our approach to care is truly person-centred – we work with people and their loved ones, across multi-disciplinary teams, to understand their needs and likes, and co-design a care plan to empower them to live their life how they choose. 

At Exemplar Health Care, our nurse-led teams support people to manage the symptoms of Huntington’s disease and empower them to live a fulfilling life with regular social activities and hobbies. We work closely with the Huntington’s Disease Association to ensure that our specialist teams have the right skills and knowledge to support people to have the best quality of life possible.

Making a referral

Read more about how our homes support people who are living with Huntington’s disease here. If you want to speak to someone about making a referral to one of our homes, please contact our friendly Referrals Team on 01709 565777 or email referrals@exemplarhc.com. 

Careers at Exemplar Health Care

If you or someone you know is interested in working with people who are living with Huntington’s disease, Exemplar Health Care offers a range of rewarding careers. Find out more about your career opportunities and our vacancies here.