Registered Nurses play a vital role in the specialist care for those living with Huntington’s, particularly those in the later stages of the disease.
Huntington’s disease is an inherited condition that affects the body’s nervous system. It can cause changes with movement, learning, thinking and emotions. Once the symptoms begin, the disease gradually progresses, so living with it means adapting to change, taking one day at a time.
Because there’s no cure for Huntington’s disease, treatment is aimed at managing people’s symptoms and supporting them to adapt to change, so they can maintain their independence for as long as possible.
As advances in technology and medical care result in more effective treatments and greater longevity, the number of people living for longer, and the complexity of their conditions, are increasing all the time.
Here, we take a look at a day in the life of a Registered Nurse on a specialist Huntington’s disease unit.
Julie Schofield works on the Lowrie Unit at Fairburn Mews care home in Castleford. The home is part of Exemplar Health Care, a provider of specialist nursing care.
The Lowrie Unit is the only unit in England that’s accredited by the Huntington’s Disease Association, an achievement that Julie has seen through as she’s progressed in her career in the home.
Here, she shares how she became a Nurse, what a typical day looks like and what she enjoys about the role.
“I started working at Fairburn Mews in 2006 when the home first opened.
“Previously, I had been working in retail as a manager of a shop, but was craving something different. When the home opened, I applied for a role as a Health Care Assistant and have since retrained as a Registered Nurse (RGN) and am now a Unit Manager.
“The unit I work on is called the Lowrie Unit and it specialises in supporting up to ten adults with neuro-disabilities and who have complex care needs, eight of whom have Huntington’s disease.”
Day to day responsibilities
“I work on the unit and have direct contact with our service users to ensure that their needs are met.
“Some of my key responsibilities are administering medication and managing the medication cycle, planning and reviewing people’s care, referring service users to other services to meet their holistic needs and managing stock of PPE and clinical equipment.
“There are also some regular audits that I do to ensure that we’re always delivering high-quality care, including medication and care profile audits, as well as clinical and environmental checks.
Supervising my team
“As Unit Manager, I supervise the team of Registered Nurses and Health Care Assistants on the unit, monitoring staffing levels and delegating tasks.
“We have a great in-house team that supports people affected by Huntington’s disease with all aspects of their care. Our Life Skills Team supports people to maximise their independence by finding alternative ways of doing things and making adaptations to their environment.
“We also have Physiotherapist who supports people to maintain optimal muscle function and limit/delay deterioration for as long as possible.
“I like promote a positive and fun culture at work, supporting everyone to work as a team and making every day the best it can be.”
Developing and delivering training
“Some of the people we support with Huntington’s disease display behaviours of concern. We take a positive approach to supporting them which involves understanding the reasons for people’s behaviour, and implementing strategies to reduce the frequency and duration of incidents.
“Everyone who works with Exemplar Health Care completed Exemplar Positive Behaviour Support training, that’s been certificated by Bild ACT. And I develop and deliver training for my team that’s bespoke to our service users – it’s really helpful that, together, we can discuss how we can best deliver person-centred care to meet people’s unique needs and challenges.
“I also deliver other training sessions such as PEG feed care and management, IDDSI, dysphagia, and React to Red for management of healthy skin and reducing pressure risks.”
A typical day shift
“My day can change quite quickly depending on service user and colleague need. My typical day usually starts with a handover with the team to discuss any updates or changes. I check the diary to see what’s happening that day and prioritise my own and 
my team’s work.
“Around 08.30 I start the morning medication round and do clinical and spot checks on all of our service users, as well as supporting the team if they need it. We also do a medication round at lunch and tea time. Throughout the day, I ensure that all documentation, including our electronic medication records and body maps, are up-to-date.
“In the afternoon, I usually allocate two hours to complete any diary actions or personal tasks, such as audits, medication stock management, marketing for the home and doing supervisions with the team.
“After tea, I do environment and equipment checks on the unit. The night shift starts at 20.00 so we do a handover from 19.45.”
Challenges of the role
“The biggest challenge is having time to do everything that I’d like to do. I have a planner with how I’d like my shift to go, but this can change quickly depending on the needs of our service users and colleagues.
“Some of the people we support can display unpredictable behaviours and people’s needs can change quickly, so it can be challenging to keep on top of changing all of the relevant documentation to reflect this.
“However, I take great joy from working with our service users and they make me giggle. I consider their loss of independent living and this brings me back to why I work so hard to make life the best it can be for them.
“I’m so proud that the unit has achieved accreditation from the Huntington’s Disease Association and is the first and only home in England to have achieved this status.”
Nursing careers with Exemplar Health Care
Exemplar Health Care has 35 specialist nursing homes across England that support adults living with complex and high acuity needs.
As a Nurse with Exemplar Health Care, you’ll work with like-minded colleagues, as part of a multi-disciplinary team, to provide the highest standards of nursing care for the service users on your unit.
The company’s Nurse to Health Care Assistant ratio is amongst the best in the UK, with on average six Health Care Assistants for every Nurse. This enables you to support people with their holistic needs and deliver truly person-centred care.
If you’re looking for a nursing role, visit the Exemplar Health Care website.
