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
  • coordinating support with medical, health and social care professionals
  • making referrals into 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
Carol - Huntington's Disease Association

Carol Dutton

Bristol, Gloucestershire

01451 861575

carol.dutton@hda.org.uk

Justine - Huntington's Disease Association

Justine Barkas

Cornwall, Devon, Guernsey, Isles of Scilly, Jersey

0139 2342502

justine.barkas@hda.org.uk

Tiffany - Huntington's Disease Association

Tiffany Stevenson

Bath, Somerset, Weston Super Mare, Wiltshire

0117 2449483

tiffany.stevenson@hda.org.uk

Jack - Huntington's Disease Association

Jack Crockford

Youth Worker (Cornwall, Devon, Dorset, Somerset, Wiltshire)

0117 2449487

jack.crockford@hda.org.uk


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.

  


 

Key contact

Chair: Heather Thomas
Secretary: Lesley Dufty

bristolhda@gmail.com

 


 

Specialist Huntington's Disease Adviser

Carol Dutton

01451 861 575

carol.dutton@hda.org.uk

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. 

Where we meet

We meet at various venues across the region.

 


 

 

When we meet

We meet on Saturday afternoons every other month, and sometimes on Sundays.

 


 

Key contact

Branch secretary: Emma Devekey

dorsethdabranch@gmail.com

 


 

 

Specialist Huntington's Disease Adviser

Eve Payler

023 8061 2218

eve.payler@hda.org.uk

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.

 


 

Where we meet

Prayer Room

The Local Care Centre

Mount Gould Road

Plymouth, PL4 7PY

 


 

 

When we meet

Every other Friday morning

10:30am - 12:00pm

 


 

Key contact

Chair: John Crosswaite

Andrew Parkinson, Plymouth Huntington's disease service Specialist Support Nurse.

 


 

 

Specialist Huntington's Disease Adviser

Justine Barkas

07749493566

justine.barkas@hda.org.uk

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.

000116720010Club Triumph

 

Key contact

Secretary: John Crosswaite

07902 291 180


Treasurer: Gillian Lomas
hdaswbranch@gmail.com


 

Specialist Huntington's Disease Adviser

Justine Barkas

07749493566

justine.barkas@hda.org.uk