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Huntington’s disease care

Our care homes provide specialist nursing care for people affected by Huntington’s disease, and who have complex health needs and/or physical disabilities as a result of their condition.

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Male service user and carer gardening

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

We're proud that our Fairburn Mews care home in Castleford is the only care home in England to be quality assured by the Huntington’s Disease Association, as having the behaviours, cultures and specialist services required to specialise in caring for people affected by Huntington’s disease.

We share this expertise internally, and a number of our care homes are currently working towards accreditation to expand our expertise in Huntington’s disease care.

What is Huntington’s disease?

Huntington’s disease is an inherited condition that affects your body’s nervous system – the network of nerve tissues in the brain and spinal cord.

Huntington’s can cause changes with movement, learning, thinking and emotions. Once the symptoms begin, the disease gradually progresses, so living with it means having to adapt to change, taking one day at a time.

How we support people living with Huntington’s disease

Currently there is no cure for Huntington’s disease, but with expert nursing care at an Exemplar Health Care home, we help people to manage their symptoms and maximise their independence and quality of life.  

Our approach is personalised to the individuals that we support – we work with them, their loved ones and professionals to design a care plan that’s tailored to their needs and goals, and enhanced through meaningful activities that make daily life more fulfilling.

Specialist Huntington’s disease care in a community-based home

Our community-based care homes and OneCare services provide person-centred care that focuses on maximising independence and empowering people to live as fulfilled lives as possible.

Each of our care homes has an in-house Nursing Team which enables us to support people living with a range of complex care and medical needs that are associated with Huntington’s disease, including feeding and nutrition, behaviours of concern, and spasticity and posture management.

Our homes are all Nurse-led which means that we can support people who need high dependency nursing care, and support them to lead a fulfilling life with the dignity and respect that they deserve. Our teams are trained to support people who use PEG feeding or require Hickman/central line management.

Girl on a swing

Holistic care from an in-house Nurse-led team

Our homes are led by an experienced Nurse-led management team, and supported by a trained in-house team of Registered Nurses and Health Care Assistants.

Each of our homes has a Life Skills/Activities Team to support with holistic and therapeutic treatments, and many of them have in-house Physiotherapists and Occupational Therapists. Everyone who lives in our homes also has the support of Exemplar Health Care’s clinical experts, including our team of Behaviour Support Specialists.

This enables people to access holistic care and a range of services in a community-based home that’s closer to their friends and family, and supports them to manage their condition, which reduces unnecessary exacerbation of their symptoms and avoidable hospital admissions.

We also work closely with community teams and other professionals, where required, to ensure that people affected by Huntington’s disease receive the required support to meet all of their needs.

  • Life skills – our Life Skills Teams support people to maximise their independence by finding alternative ways of completing everyday tasks and making adaptation to their environment. They also support people to take part in meaningful activities, both inside and outside the home, to improve their wellbeing.   
  • Physiotherapy – our Physiotherapists support people to maintain optimal muscle function and limit/delay deterioration for as long as possible, and adapt to changes in function.  
  • Occupational therapy – our Occupational Therapists help people to overcome the effects of their disability or condition, by considering their physical, psychological, social and environmental needs.  
  • Behaviour support – our dedicated Behaviour Support Team work with individuals and care teams to understand the reasons for people’s behaviour, and implement strategies to reduce the frequency and duration of incidents of behaviours of concern. The team is supported by our Consultant Psychiatrist, Dr Akande. 
Male service user with HD

Behaviour support for those affected by Huntington's disease

People affected by Huntington’s disease can often display behaviours of concern.

Many of the people we support have been deemed to have behaviours that are considered ‘too complex’ for mainstream nursing and care services.

Our approach to behaviour support focuses on how we can prevent the need for restrictive practices and reduce the frequency and intensity of behaviours of concern.

All of our care and nursing colleagues complete our Exemplar Positive Behaviour Support (EPBS) training that’s been certificated by Bild ACT, and are supported by our central team of Behaviour Support Specialists through person-centred interventions, fortnightly clinics and regular advice forums.

High staffing levels to support person-centred outcomes

Our high staffing levels of Registered Nurses and trained Health Care Assistants are determined by each person’s individual needs, whether that be 2:1 or 1:1.

This enables us to work at their own pace and build trust, and provide support with all aspects of their life, leading to improved person-centred and longer-term outcomes for those affected by Huntington’s disease.