What recent advances in Huntington’s disease mean for patients today
Recent developments in Huntington’s disease research, including progress in gene therapy, have brought renewed optimism to the field.
While these advances mark an important step forward, the reality for many people living with Huntington’s disease today remains complex. For patients and families, the focus is not only on future treatments, but on the care and support available now.
At the Royal Hospital for Neuro-disability, our role is to ensure that progress in research is matched by high-quality, specialist care that supports people to live as well as possible.
Understanding Huntington’s disease
Huntington’s disease is a progressive neurological condition that affects movement, cognition and behaviour.
Common signs can include:
- changes in mood and behaviour
• difficulties with communication
• cognitive decline
• movement disorders
Specialist support at RHN
While developments in treatment are encouraging, many people living with Huntington’s disease continue to require specialist support.
The condition often presents with a combination of behavioural, cognitive and physical challenges, which can make day-to-day life and engagement in rehabilitation more difficult without the right care in place.
Our Neuro-behavioural Service provides tailored, transdisciplinary support for individuals with complex needs.
Each patient undergoes a comprehensive transdisciplinary assessment to understand the underlying causes and functions of behaviour. Through the use of Positive Behaviour Support (PBS) and continuous 24-hour monitoring, we support patients to develop adaptive communication strategies while regularly reviewing behavioural presentation.
This enables us to implement proactive, evidence-based interventions that reduce risk and promote positive change.
A holistic approach to care
Alongside behavioural and cognitive support, our teams manage the wider health needs that often accompany neurological conditions.
Care is delivered through a coordinated approach across nursing, therapy and medical teams ensuring that physical and medical needs are consistently monitored and managed.
This includes support with:
- mobility and physical health
• communication and swallowing
• continence and tissue viability
• enteral feeding and nutritional needs
Where additional specialist input is required, we coordinate access to external services, including diagnostic investigations and specialist consultations such as dental, orthopaedic, cardiac, urology, neurosurgery and mental health services.
By managing these wider healthcare needs, we support more effective care pathways and help prevent avoidable hospital admissions or prolonged placements.
Turning progress into care
As Neuro-behavioural Matron Lizel Muyo explains:
“At RHN, we understand how significant new developments in treatment are for our patients living with Huntington’s disease. Our role is to turn hope into practical, compassionate care — supporting people to live with dignity, connection and purpose, even as the condition progresses.”
Looking ahead
As research continues to evolve, specialist services will remain essential in bridging the gap between scientific progress and everyday care.
Ensuring that individuals living with Huntington’s disease receive the right support, at the right time, remains at the heart of what we do
Contact
If you would like to speak to a member of our team:
Admissions team
020 8780 4513
[email protected]
Coordinator team
020 8780 5101
[email protected]