Carol Davies
South Wales, Mid Wales
Support in Wales
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 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
Delia Roberts
North Wales (Anglesey, Conwy, Denbighshire, Flintshire, Wrexham, Gwynedd)
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.
North Wales branch
The North Wales Huntington's Disease Association branch is here to support people with or affected by Huntington's disease including carers, family members and those at risk.
This local branch was formed in 2010. Initially, the branch was formed with members from Anglesey and Gwynedd. During the past two years, we have raised a considerable amount of awareness of Huntington’s disease through the commitment and dedication of branch members and our Specialist Huntington's Disease Adviser. This has allowed the group to expand and welcome new members from the counties of Conwy and Denbighshire.
Where we meet
We meet at Table Table, Parc Menai, Bangor, Gwynedd, LL57 6BW, and we also have social events at the Premier Inn Restaurant/Pub on Parc Menai.
When we meet
Meetings held every three or four months. There are no meetings during July and August.
Key contact
Branch Secretary: Catrin Roberts
07746549123
Branch Treasurer: Trevor Jones
Specialist Huntington's Disease Adviser
Delia Roberts
0151 331 5444
South Wales support group
The South Wales Huntington’s disease support group is a small friendly group who get together once a month to chat, support each other and share helpful information. Whatever your connection to the disease, whether at risk, undergoing testing, tested, diagnosed positive or negative, symptomatic, carer, family member, friend or professional you are welcome to join us.
The group is focused on the needs of the members and between us we have a wealth of experience to share. So often people feel very alone with this disease and the aim of the group is to meet others in similar situations, feel listened to and supported.
We also have a facebook group where members can chat with each other between meetings. If you would like to speak to me directly then please contact me via email and I can arrange to contact you either on the phone, in person or electronically.
Where we meet
Fairwater Road
Llandaff
Cardiff, CF5 2LN
The site is fully accessible and has disabled parking as well as an on-site cafe and beautiful grounds to explore. If you need help with transport let me know and we can see if other members are able to help out.
When we meet
Generally the last Sunday of the month at 2:30 - 3:30pm.
Please contact the group before attending so we can plan accordingly.
Key contact
Support Group Facilitator: Steph Lynch
huntingtonscardiff.hda@gmail.com
Specialist Huntington's Disease Adviser
Carol Davies
01432 800869
carol.davies@hda.org.ukDearnevale
Services
Supporting people living with complex physical disabilities, neuro-disabilities, like Huntington's disease and Parkinson's disease, and long-term conditions.
Website
Address
Elizabeth Street
Grimethorpe
Barnsley
S72 7HZ
Quality Assured accredited care homes
We want to make choosing a care home more of a positive experience for families affected by Huntington's disease. The Quality Assured Mark will improve choice, and provide people with reassurance that core standards of care will be provided and more information to help them make a decision about the best care home for their needs. Below is a directory of care homes with current Huntington's Disease Association accreditation.
Cwm Gwendraeth
Services
Delivering high-quality care to individuals who with all types of dementia, acquired brain injuries, chronic neurological conditions such as Huntington's disease, and the mental health difficulties and the needs associated with palliative care at the end of life.
Website
Address
Llannon Road
Upper Tumble
Llanelli
Carmarthenshire, SA14 6BU
Cwmgelli Lodge
Services
Provides care for adults who suffer with all types of dementia, acquired brain injuries (through trauma, stroke or other neurological events), learning disability, complex behavioural needs, chronic neurological conditions such as Huntington’s disease, Parkinson’s disease, Motor Neurone Disease, plus support for people with serious and enduring mental health conditions.
Website
Address
Cwmgelli Lodge,
Lon Pennant,
Blackwood NP12 1BR
Pen Y Bont Court
Services
Provides high-quality services for people who have complex needs associated with mental illness, learning disabilities, challenging behaviour, dementia and long-term conditions such as Huntington’s disease.
Website
Yr Ysgol
Services
24-hour care home for adults with provision for learning disabilities, mental health and concurrent disorders/illnesses and behaviours.
