MEDIA RELEASE Wednesday May 26, 2021

Lindsay Wilson is a Huntington’s Disease (HD) Specialist with Scottish Huntington’s Association who regularly works with the team at Balhousie Rumbling Bridge in the Perthshire home’s specialist HD unit.  To mark Huntington’s Awareness Month, Lindsay shares her career path, experiences of working with people living with HD, why she’s passionate about raising awareness of the disease and her advice for those interested in working in this field of specialist care.

Huntington’s Disease is a rare, hereditary, degenerative disorder of the brain with symptoms including movement, behavioural and cognitive disturbances. Lindsay first learned about the disease while on a 12-week placement in a specialist HD unit in her second year studying nursing at the University of Dundee.

“I really enjoyed working with the patients and families and was offered a job as a carer at the end of my placement,” says Lindsay. “This allowed me to continue to develop my skills and knowledge about HD during my studies.”

Once Lindsay qualified in 2012, she became a Staff Nurse in the HD unit, then Senior Staff Nurse two years later. Her next step was to join the Scottish Huntington’s Association as an HD Specialist and she’s been with the charity ever since. “In this role I can take a more holistic approach to the care and support of people with HD and their families while always building my skills and experience,” Lindsay explains.

As part of her work with Scottish Huntington’s Association (SHA), Lindsay works with clients at Balhousie Rumbling Bridge in the home’s HD specialist care unit, which she thoroughly enjoys.  “I have a great balance as a SHA HD Specialist working in the community and at Rumbling Bridge. With a younger resident group than some other homes, the staff team work well in creating a person-centred environment and ensuring activities reflect the residents’ interests and hobbies.”

Lindsay is proud of her work with families at Rumbling Bridge and in the wider community living with HD every day. “The families I work with inspire me to make sure they have the support that’s right for them when they need it.  I see families showing great resilience despite the many challenges they face. Being able to provide support, and being there for all families living with HD, is so important to me.”

Lindsay is passionate about raising awareness of the disease. “When I was studying, my student placement really opened my eyes to the symptoms of HD and how it affects individuals and their families. I wanted to find out more about it and the specialist care that is needed, especially as it is a rare disease that even today is not well known or understood by the wider public and, in some cases, by health and social care professionals.”

As someone who was inspired by her experiences of HD nursing during her university years, Lindsay has sage yet simple advice for anyone interested in becoming an HD Specialist. “Find out as much as you can about Huntington’s Disease before you make your mind,” shares Lindsay. “Working with HD families is incredibly rewarding, but you have to be ready to step out of your comfort zone and go that extra mile for people. If you’re looking for advice, you can get in touch with me or anyone at SHA and we’ll be happy to help you.”

Scottish Huntington’s Association provides lifeline support for families across Scotland through its network of HD Specialists, youth advisors and financial wellbeing officers. Committed to driving up the standard of care for people impacted by Huntington’s, the charity led the development of the world’s first National Care Framework for Huntington’s Disease, which has been followed by a rollout of local versions across Scotland.

“Through our partnership with Rumbling Bridge, Lindsay brings extensive insight into how Huntington’s impacts individuals and the people who love them,” said Alistair Haw, CEO of Scottish Huntington’s Association.

“This role extends beyond providing 1-2-1 support to residents; having a dedicated HD Specialist such as Lindsay helps clients and their families to feel connected to the Huntington’s community. It also gives them the confidence that staff in the unit have access to SHA’s expertise in the delivery of the high quality, personalised care that is needed.”

Lynne McMurtrie, Home Manager at Balhousie Rumbling Bridge, adds: “The knowledge and experience Lindsay brings to our dedicated Huntington’s Disease specialist care unit at Balhousie Rumbling Bridge is second to none. HD is a very complex and challenging disease and the support offered by Lindsay and the wider team at Scottish Huntington’s Association has a real, positive impact on our HD families.”

For more information about Huntington’s Disease visit https://hdscotland.org/

To find out more about joining our team at Balhousie Rumbling Bridge and for all roles visit www.balhousiecare.co.uk/careers

ENDS

For media enquiries please contact Anna Gunn on 07492 163614 or email anna.gunn@balhousiecare.co.uk

About Balhousie Care Group

Balhousie Care Group was formed 30 years ago to fill a gap in quality residential care in North East Scotland. Today, with 26 homes in the area, it is one of the leading providers of care for the elderly in Scotland, providing care to over 900 residents.

Balhousie Care prides itself on its person-centred approach to care. Putting people right at the forefront of everything they do; it’s inclusive of everyone. They capture this philosophy through the roll out of ‘Together We’re Great’, an initiative which recognises the skills, talents, attributes and support areas for each and every person involved in the organisation. Together We’re Great aims to value individuality and promote excellence across the organisation.

A Participation Charter – a first-of-its-kind in the care home sector – commits to residents getting a bigger say than ever in the care they receive, from writing care home policies to recruiting staff.

Balhousie Care Group is the recipient of numerous awards. These include three Scottish Care Awards, 2019 Growth Business and 2018 Service Business of the Year at The Courier Business Awards, 2019 Growth Business of the Year Perthshire Chamber of Commerce STAR Award, and SME Scotland Business Man of the Year 2019 for Chairman Tony Banks.

About Huntington’s disease (HD) 

Huntington’s disease is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. It is hereditary, meaning that it impacts upon entire families over generations rather than on individuals alone, with each child of a person who has Huntington’s disease at 50% risk of inheriting the condition. As Huntington’s disease progresses it can impact a person’s:

  • Movement (or motor skills): People with HD can suffer from repetitive involuntary movements resulting in mobility, balance and coordination problems as well as difficulties with speech and swallowing.
  • Thinking processes (or cognition): People with HD can develop a type of early onset dementia, which affects their ability to process information, make decisions, solve problems, plan and organise.
  • Mental health: People with HD can also experience a decline in mental health. Depression, anxiety, irritability, obsessive pre-occupations and apathy are amongst the most common mental health problems experienced. Psychosis may also occur.

Around 1 in 5000 people in Scotland have HD. 1100 people have been diagnosed with the disease with an estimated 4000 – 6000 at risk of inheriting it from their parents.

Symptoms generally progress slowly over a long period time. Those who have the disease may eventually lose the ability to walk, talk, eat, drink, make decisions or care for themselves. It typically takes between 10 and 25 years from a person developing HD symptoms until the end of life.

Although worldwide research is taking place there is, at present, no cure for Huntington’s disease. However, many of its symptoms can be managed with a combination of medication, alternative therapies and appropriate support from specialist services delivered by Scottish Huntington’s Association (SHA) and medical, health, social care providers.

About Scottish Huntington’s Association (SHA)

Scottish Huntington’s Association is the only charity in the country exclusively dedicated to supporting families impacted by HD.

SHA does this through a network of HD Specialists, Specialist Youth Advisors and a Financial Wellbeing Service. The lifeline services SHA provides make the difference between families coping and not coping.