Carol Dutton
Bristol, Gloucestershire
Support in the South West of England
We are here to support you whether you are looking for peer support or advice from a professional. Below you can find out more about our Specialist Huntington's Disease Advisers and local branch and support groups.
Specialist Huntington's Disease Advisers
Our specialist advisers are experienced and compassionate care management professionals.
They support anyone who needs their help at any stage of the Huntington’s journey. They can help people living with the disease, people at risk of inheriting the disease, family members and carers, and children or young people. They can even advise friends, neighbours, employers and your medical team.
Our Specialist Huntington’s Disease Advisers can help by:
- providing a listening ear, advice and emotional support
- delivering our confidential telephone helpline service
- communicating support with medical, health and social care professionals
- working with specialist Huntington’s disease clinics
- advocating for the person with Huntington’s disease to get the best support
- organising and attending local support networks and carers’ group meetings
- providing information resources on symptoms and how to manage them
- connecting younger family members with our Youth Engagement Service - HDYES
- giving support for sensitive end-of-life care
- educating medical, health and social care professionals
Justine Barkas
Cornwall, Devon, Guernsey, Isles of Scilly, Jersey
Tiffany Stevenson
Bath, Somerset, Weston Super Mare, Wiltshire
Jack Crockford
Youth Worker (Cornwall, Devon, Dorset, Somerset, Wiltshire)
Branch and support groups
You can click on each branch and support group to find out more about the groups and where they meet. If you can't see one in your area and you are thinking about setting one up, please email branch@hda.org.uk and we can support you in doing this.
Bristol branch
The Huntington's Disease Association Bristol branch is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area. We are a friendly social group who meet a few times during the year. We meet in different venues throughout Bristol, so please get in touch to find out when and where our next meeting is.
Dorset branch
The Huntington's Disease Association Dorset branch is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area for the past 20 years. We offer support and friendship via social events in Dorset to local families. We also fundraise to support local families.
Plymouth support group
The Huntington's Disease Association Plymouth support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area.
The Plymouth support group meet under the umbrella of the Livewell Southwest health care service provider, providing for patients living within the Plymouth area, although we do have visitors from further afield looking for more general support in the Huntington's family, from time to time.
We also invite health and social care professionals to our meetings to give occasional talks about various topics around Huntington's disease and usually welcome our local Specialist Huntington's Disease Adviser.
South West branch - Devon and Cornwall
Welcome to the South West branch of the Huntington’s Disease Association. We have been supporting families affected by Huntington's disease across Devon and Cornwall for 19 years.
Branch highlights
This year we have attended the Club Triumph Race Round Britain Rally. Our adviser for Devon and Cornwall met drivers and their support teams in Bude. The event itself raised over £70,000 for the Huntington's disease community.
Plym PieceMakers have nominated the Huntington's Disease Association as their chosen charity for the next two years. A member of the group is gene-positive and her husband helps run the South West branch. Plym PieceMakers are a group of quilters who meet once a month at Yealmpton Community Centre in Devon.
Our Adviser gave an informal information session to the group in June. We have also been actively supporting several small grants across the region and groups of volunteers have kindly forwarded donations to the branch.
The highlight of 2022 was attending the VW camper van rally near Crewkerne with our Specialist Huntington's Disease Adviser, Tiffany. Over £300 was raised in donations over the weekend and a considerable sum was kindly forwarded to the Association by the Club from the event proceeds.
We will update you two or three times a year with what's going on in the region and would love to hear from you about local events where possible. We are here to listen, help with problems and find the right people to give advice if needed.
Key contact
Secretary: John Crosswaite
07902 291 180
Treasurer: Gillian Lomas
hdaswbranch@gmail.com
Specialist Huntington's Disease Adviser
Justine Barkas
07749493566
Wiltshire support group
Welcome to the Wiltshire Support Group of the Huntington’s Disease Association. We have been offering support and advice to local people for many years. Initially, we started as a support group, developed into a branch between 2016 and 2024, and now we have become a support group again. We welcome the local Specialist Huntington’s Disease Adviser to our meetings. We are a volunteer-led group and we welcome anyone affected in any way by Huntington’s disease to our meetings. Our happy crowd have all sorts of connections to Huntington's, pre-symptomatic, symptomatic, families and carers.
When we meet
The first Saturday of odd months of the year between 2pm and 4pm. In even months of the year, we meet at various venues around Wiltshire, generally on the first Friday of the month between 1pm and 3pm.
Our tea and chat sessions are helpful to many. Quite often it's a small comment about how someone else deals with something can be almost a light bulb moment. You will also find that it is comforting to know that you are not alone as we do understand the effects of this devastating disease.
Where we meet
Yatesbury Village Hall
Yatesbury
Calne
Wiltshire, SN11 8YG
Upcoming events
Friday 4 October
1.00pm to 3.00pm
The Pewsham, London Road, SN15 3RU (on the A4 between Chippenham and Calne at the bottom of Derry Hill)
Saturday 2 November
2.00pm to 4.00pm
Yatesbury Village Hall, SN11 8YG
Christmas Buffet Lunch Saturday 14 December
2.30pm to 2.30pm
Yatesbury Village Hall, SN11 8YG
Key Contacts
Jenny Parrish 07749774882
Sue Calleya 07878711633
Sue Griffin 07706908674
Arline Stovell 07716394754
Email: wiltshirehda@gmail.com
Specialist Adviser
Tiffany Stevenson
tiffany.stevenson@hda.org.uk
01172 449 483
Useful services
Plymouth
Plymouth Huntington’s Service
The Plymouth Huntington’s Service is a community service that supports individuals with a diagnosis of Huntington’s disease, and their families, to adapt to the changes in their Huntington’s disease.
The service operates Monday – Friday, 9am – 5pm, and assesses and coordinates healthcare for people with Huntington's disease. This includes a regular review by a specialist consultant psychiatrist and referral onwards to appropriate disciplines such as speech and language, occupational therapy and physiotherapy.
Referral is via your GP.
Wessex
Huntington's Disease Management Clinic (Southampton Neurology Department)
The neurology department provides services for most of central southern England including Southampton, Winchester, Portsmouth, Basingstoke, Salisbury, Isle of Wight, Chichester and the Channel Islands.
Fiona Chaȃbane, Consultant Admiral Nurse / Clinical Nurse Specialist is part of this team.
Contact
Email: Fiona.chaabane@uhs.nhs.uk
Phone: 07824 607242 (Tues,Wed,Thur)
Gloucestershire
Integrated Community Teams (ICTs)
The integrated community teams bring together community nurses, occupational therapists, physiotherapists, social workers and reablement workers to work as one team to serve a local area.
Clinical Health Psychology - Neurology
The psychology service to neurology aims to promote the psychological well-being of adults living with chronic neurological conditions and their families. Inpatients and outpatients are seen for assessment and therapeutic intervention.
Gloucestershire Royal Hospital Huntington's Clinic
This clinic is with Dr Sian Alexander Consultant Neurologist and Dr Aileen Thomson Clinical Psychologist.
Somerset
The neurology service provides specialist care to patients across Somerset. This provides general neurology clinics for assessment and treatment
The Community Rehabilitation Service (CRS)
Formerly known as the Integrated Rehab Teams (IRT), is a county-wide service. It is available to all adults who are having problems carrying out everyday activities due to a medical condition. CRS will aim to help people increase their level of independence by helping them regain or adapt their functional abilities to manage the impact of their condition. They will be supported to work towards improving their ability to do the things that matter most to them.
Bristol
Huntington's Disease Clinic
Brain Centre,
Southmead Hospital, Bristol
Specialist Community Neurology Service
The Bristol Specialist Community Neurology Service is led by a range of healthcare professionals who support patients with neurological impairments.
The service offers an assessment and discussion of your current needs, and will work with you to provide goal-led treatment using shared decision-making principles.
Bath
Bath and North East Somerset
Community Health and Care Services - Planned Rehabilitation (Neuro Team)
The Neuro Team provides rehabilitation and condition management for adults who are affected by complex, long-term, deteriorating neurological conditions.
Contact: 01225 831 544
Cornwall
Liskeard Huntington’s Disease Clinic
The clinic is held bi-monthly and led by Dr Stephen Pearson (Consultant in Older Adult Psychiatry), Dr Rupert Noad (Consultant Neuropsychologist) and Dr Simon Edwards (Consultant Neurologist) alongside genetic counsellors.
Neuro-Rehabilitation Therapy Service
The neuro-rehabilitation and stroke therapy team is a community-based service for people with complex neurological symptoms, diagnosed neurological conditions and stroke. The integrated service is led by a consultant therapist in neurology and provided by clinical specialist physiotherapists, and occupational therapists and neurology care advisors.
The team is made up of four services:
- neurological rehabilitation
- stroke specialist therapy
- neuromuscular
- neurology care advice
Contact: 01209 318101
Neurology Care Advisors
The neurology care advisors give advice, information, signposting and support and can provide a single point of contact to guide you through the range of services available in Cornwall and the Isles of Scilly. As a patient, relative or carer there will be times when you need to turn to someone for help, advice or support. You may need help sorting out a problem or just the telephone number of someone that can help. The neurology care advisors will work closely with health and social care professionals and other organisations ensuring continuity of care and support.
Contact: 01209 318 106
Devon
Exeter Huntington's Disease Clinic
The clinic is held once a month, led by consultant neurologist Dr Tim Harrower, with a research nurse and genetic counsellor.
Huntington’s Disease Mental Health Support
This webpage gives an overview of services available in Devon (including Plymouth) and links to:
- Psychology and psychological therapies
- Community mental health services for adults
- Older people’s mental health
- Community physical health care
- Community neuro rehab teams
Torbay and South Devon Community Neurological Rehabilitation Team
Northern Devon Community Rehabilitation Team
Eastern Devon Community Neurological Rehabilitation
