The Importance of Specialist Care

Including specialists in care planning from an early stage can be the difference between a good or a compromised quality of life for someone with HD

The effects of HD can be broadly grouped into three areas and influence how we should consider a person's needs. CLICK ON each circle to view key elements of St Andrew's HD care approach.

MDT

Cognitive

the processes that manage how people think, plan and interact

A Psychosocial approach

Maximising the preservation of function

  • make baseline assessments of cognitive function
  • create bespoke strategies for care
  • plan wrap-around specialist therapies and treatment
  • support daily living with occupational therapy
  • develop formulation- guided interventions
  • plan graded access to the community
  • undertake assessment of personal safety awarenesss
  • establish guidelines for continuing support as ability decreases

Emotional

the mood and behavioural changes that affect/reflect how people feel

Neuropsychiatry and Clinical Psychology

Supporting emotional and behavioural issues

  • identify, assess and manage HD symptoms
  • tailor nursing and specialist care to each individual
  • create a timetable of activities and outings to support treatment
  • support emotional needs as the disease progresses
  • enhance skills and relaxation with art and music therapy
  • use ‘Life Story’ work to truly understand the person’s likes and dislikes
  • encourage Mindfulness and integrate Acceptance and Commitment Therapy (ACT)
  • tailor emotional management guidelines for patients and staff
  • provide enhanced opportunities for family engagement
  • support interpersonal skills and relationships

Physical

the motor functions, particularly those controlling movement and eating

OT, Physiotherapy and Speech & Language Therapy

Optimising health and quality of life

  • manage dysphagia with individual dietary assessments
  • support speech and communication with dysarthria therapy
  • provide access to complex medical investigations such as videofluoroscopy or PEG fitting
  • review equipment and seating
  • provide access to specialist equipment and assistive technology
  • involve community specialists such as GPs and podiatry services
  • focus around movement, mobility and posture
  • support daily living
“Provide a comprehensive assessment of cognitive function to help understand the limits of a person’s ability to think, plan or remember.”
Inga, Clinical Psychologist.
“Because balance becomes impaired the risk of falls is much greater. Consider how best to safely transfer patients in and out of beds, chairs etc, and pay close attention to walking.”
Carer
“Regular swallowing assessment can guide the grade of diet and consistency of fluids that can be safely managed to reduce risks of choking and aspiration.”
Speech & Language Therapist
“The risk of choking is very high, particularly as some people eat too fast and forget to chew. Find a quiet area for them to eat in and always keep an eye on them.”
Carer
“Make sure that nutritional needs are met and a high calorie diet is maintained. Think of people with HD as always being hungry, so don’t be afraid to offer double portions! The prescription of specialist supplements can also help to slow weight loss and prevent malnutrition.”
Dietician
“I used to have a great job and an active lifestyle. Just because I have HD doesn't mean I have forgotten how to have fun.”
Ian, living with HD
“Expert medication management will help the symptoms of mental illness that frequently occur alongside the movement disorder.”
Neuropsychiatrist

HD symptoms can sometimes present in ways which are not immediatley clear to the healthcare professional, and can also vary widely between individuals. Our specialists are expert in the management of the physical, emotional and thinking deficits that distinguish HD from other progressive neurological conditions, and understand the best way to support each patient.

"Life story books are an on-going journal of a person's life, which puts the personal history, interests, likes and dislikes of our patients at the heart of their care. One advantage of using a life story book is that it helps aid communication and encourages interaction"

Vincent Harding, Assistant Psychologist

Chloe's story

On her arrival at St Andrew's, Chloe, a 28 year old with Huntington's disease, was visibly overwhelmed and anxious at being in yet another hospital after a string of unsuccessful placements.

She presented with verbal and physical aggression and was at risk of self-harm, requiring enhanced nursing observations. She would refuse to engage with staff in her planned occupational therapies and routinely refused meals.

From an early point staff aimed to reduce Chloe's frequent withdrawal to her own bedroom, and to understand the causes of escalating behaviour that would result in her slamming doors and throwing property. Getting to know Chloe was therefore a primary objective and staff worked with her to start building her 'Life Story' book - an on-going journal providing the opportunity for Chloe to reminisce about her past and for staff to gain a fuller understanding about her life.

Staff also incorporated RAID® principles and agreed with Chloe a goal of being calm and motivated during her engagement in activites. The multi-disciplinary team provided an activity timetable that promoted positive actions and gave Chloe a schedule to work towards. Key to helping her to achieve her goals was the use of distraction techniques to pre-empt disruptive behaviour, using her Life Story book to understand what she liked and disliked.

 

"Because balance becomes impaired the risk of falls is much greater. Consider how best to safely transfer patients in and out of beds and chairs, and pay close attention when they are walking."

Carer

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"We're off to see Cliff Richard on Friday night as one of our patients is a big fan"

Sandy, Lead Nurse