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Developing a specialist programme for Huntington’s disease

This article has been developed by members of Priory Burton Park’s transdisciplinary team, including Martine Blowfield, Director of Clinical Services; Dr Danielle Desperles-Hughes, Consultant Clinical Psychologist; Victoria Jackson, Warwick Ward Manager; and Jocelyn Plante-Bekenn, Senior Occupational Therapist.

Huntington’s disease (HD) is a hereditary disease of the central nervous system caused by a faulty gene on chromosome 4, whereby the fault results in individuals producing excessive amounts of the protein ‘Huntingtin’.

Latest research shows that approximately 12 in 100,000 people are affected by HD. As it is a genetic disease, individuals whose parents have HD have approximately 50% chance of also inheriting the disease, which normally develops during adulthood, around the age of 35 - 40 years. It is possible for HD to develop earlier in life, during adolescence, although this is rare. As a consequence, HD often has a profound impact, not just on families in terms of their relationships and family dynamics, but also in terms of the psychological impact of this condition on each family member, who may experience feelings such as guilt and loss.

HD affects all aspects of an individual’s life, beginning with subtle changes in personality, developing to more pronounced changes in conjunction with deterioration in cognitive functioning. The nature of HD means that it can present very differently in each individual and presentations can change within an individual as the disease progresses. Therefore, no two treatment approaches are the same; each person requires full and comprehensive assessments on a regular basis so that bespoke packages of care can be tailored to meet specific and changing needs.

About Warwick Lodge

In preparation for the development of a bespoke service to support patients with HD, clinicians with significant expertise in the field of HD were consulted to consider all aspects of ward specification. This was done to ensure needs could be met for patients who are in earlier stages of the disease right through to those requiring end-of-life care, thus maintaining continuity of care for people throughout these stages. Consequently, the historic building of Warwick Lodge was refurbished with this care pathway in mind. It offers state-of-the-art equipment to support these individuals.

The 15-bedded unit includes:

  • Hydraulic baths and tracking systems
  • Specialist kitchens
  • Recreation and lounge areas

Our Burton Park video showcases the new unit and its facilities.

Our therapeutic programme

There has been exciting research into HD, with researchers exploring ways of slowing down the condition. It’s up to our HD specialists, such as the team here at Burton Park, to ensure that those who are currently living with the disease are best supported to flourish and enjoy happier and more fulfilling lives.

Our specialised therapeutic programme was developed to support those at varying stages of the disease, with specialist support available for the physical, cognitive, behavioural and emotional challenges that those living with HD face. Our therapy programmes aim to treat and manage the symptoms of HD, which include:

  • Mood changes such as depression, anxiety, poor coping, loss, and psychosocial adjustment
  • Difficulty concentrating and memory lapses
  • Impairments in planning, problem solving and impulse control
  • Difficulty moving, including involuntary jerking or fidgety movement of the limbs and body
  • Personality changes
  • Problems swallowing, speaking and breathing

Individualised activity programmes are used to complement therapeutic interventions, and focus on supporting and enhancing quality of life to support individual patient goals and to meet their specific needs. In practice, this forms a comprehensive and individualised HD care plan.

Important to the delivery of exceptional care is the team. Warwick Lodge is a consultant-led service, which is headed by Consultant Psychiatrist, Dr Martine Stoffels, who specialises in old age psychiatry, HD and progressive neurological conditions (PNCs). Working with Dr Stoffels and also leading the service is Consultant Clinical Psychologist, Dr Danielle Desperles-Hughes. Both Dr Stoffels and Dr Desperles-Hughes have more than 10 years’ experience in acquired brain injury (ABI), HD and PNC, and work full-time on site. Burton Park have also employed a new Director of Clinical Services, Martine Blowfield, who has extensive experience in HD and who will lead the transdisciplinary team, which consists of:

  • Huntington’s Disease Association (HDA) approved trained general and mental health nurses
  • Occupational therapists
  • Speech and language therapists
  • Physiotherapists

Working in a true transdisciplinary approach, the team also work closely with external dietitians, GPs and end-of-life and palliative care teams, to ensure that care is supported holistically and respectfully across an individual’s entire journey.

To find out more about Priory Burton Park’s new Huntington’s disease unit, please contact the hospital directly on 01664 484 190.

As it can be a very difficult time for those in the initial stages of the disease and for their loved ones, additional resources on HD can be found on the HDA website:

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