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Huntington’s Disease: Compassionate Care and Treatment

Alison King

As we mark Huntington’s Awareness Month at Cygnet, Alison King, Hospital Manager at Cygnet St William’s in Darlington, takes time to reflect on the support, care and treatment we provide to those more severely affected by this life changing condition.

Huntington’s Disease can manifest in several different ways but the core symptoms fit broadly into three categories: motor, cognitive and psychiatric.

  • Motor symptoms are most often large involuntary jerking-type movements of the limbs (chorea) although they can also affect the movements associated with speech and swallowing.
  • Cognitive symptoms commonly include difficulty organising thoughts, controlling impulses or outbursts of anger and memory lapses.
  • Psychiatric symptoms such as depression, obsessions, psychosis and aggressive behaviour can occur and they can be some of the earliest signs of the disorder. Our Neuropsychiatric services provide a setting where the complex care needed for these individuals can be provided.

While it is not common for an individual with Huntington’s Disease to need that level of care, if this is necessary, it can be a scary time for their family. Their loved ones can behave so differently – they can swear or hit out when they didn’t before the disease progressed; they can make accusations against family members or take a sudden dislike to a son or daughter which can be very distressing for everyone involved. Some of these patients will require detention under the Mental Health Act and their relatives may not understand why it’s needed. The Mental Health Act provides a framework to keep individuals safe either from self-neglect or a tendency to aggression towards others and it is not at all like the archaic mental health hospitals seen in films! Loved ones are not locked away in handcuffs or chemically restrained but approached with care and compassion.

Our specialist knowledge and skills can walk alongside a person’s journey through this tough part of the disease progression for the individual and the family members involved. Cygnet’s Neuropsychiatric services offer specialised environments which are welcoming and designed to maximise a person’s abilities. Individuals have their own bedrooms and meals cooked in-house which can be tailored to a person’s needs.

Input from our occupational therapists and staff will support daily living skills and structured community activities. Speech and language therapists’ work towards improved abilities in communication and eating as often swallowing becomes difficult, and our physiotherapist will look at gait and muscular discomfort, for example. Medications for the symptoms as described above will be considered by the neuropsychiatrists and, if prescribed, closely monitored in conjunction with regular physical health reviews. Psychologists will assess cognition and aim to improve deficits with bespoke 1:1 therapy so that mental health and cognition is approached holistically. Our nurses will support skills in washing, dressing and healthy life choices, and care for the individual with empathy and kindness.

Rehabilitative approaches are key in a hospital setting and are needed for a period of time only, working towards discharge. We understand that the families involved are likely to be having their own struggles with the disease and this adds another dimension to the care that is offered. Regular face-to-face meetings with family help to address these as well as interim discussions as needed. Our focus is on excellent communication with best interests of the patient at heart.

Mike* is one such individual receiving a quality of life he and people in his life didn’t think would be possible. He knew that Huntington’s was in his family tree and that was hard for him to come to terms with. He also knew that he may be developing symptoms and his siblings weren’t which was just too hard for him to initially comprehend. Suicide seemed a way out and he made several attempts on his life; he began self-medicating with illicit drugs and alcohol.

Times were really hard for him for the next 15 years or so and life seemed to spiral out of control for him. He didn’t have a home to call his own; he refused to work with health and social care workers and his mental and physical health significantly deteriorated until eventually it became so bad that it he was admitted to a hospital and was detained under the Mental Health Act. With this support he would finally be able to receive treatment and medication that helped him with the symptoms he now faced as well as the opportunity to address years of self-neglect.

Mike found this change hard and didn’t make it easy for any of the staff team to support him. Those responsible for his care and treatment found him challenging to support – he wasn’t used to being in one place for any length of time and certainly didn’t trust that they were trying to do to help him. He found any staff team intrusive, irritating and frustrating. It seemed that a diagnosis of Huntington’s Disease made him feel like he couldn’t have a life and didn’t want to make any attempt to be part of any aspect. A different approach was needed which could still provide the level of care and treatment needed but maybe a smaller more homely environment would be an option for him?

Referred into Cygnet St William’s, Mike’s journey to the service wasn’t straight forward and it took time for the staff team to find a way to offer Mike a solution that he could engage with. But it happened and he was transferred to St William’s where daily life changed within hours of him arriving. Sitting outside eating a snack just after he arrived – taking in the fresh air and new surroundings with a degree of contentment. Whilst he hasn’t always been the model service user at St William’s as he himself would note; the small positive steps resulted in little changes each day enabling him to improve his quality of life and take part in social and therapeutic activities taking place each day.

And now…the staff team at St William’s have seen a change in what Mike can do and this is sadly due to the disease progression. However, every day he can be heard properly belly laughing with the staff team and every day he brings a smile to the team’s faces. They cannot mention his name without smiling – his personality is infectious!

Whilst not everyone’s experience of Huntington’s is the same or will ever mirror Mike’s, it’s important to realise that specialist teams and knowledgeable care is key to providing compassionate care and treatment for individuals with Huntington’s Disease when they suffer from high levels of distress. Through a hospital stay, our objective is for improved quality of life and to empower the individual to make decisions about their own treatment in the future.

*Name has been changed to protect his identity

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