Eve Payler
Hampshire, Isle of Wight
Support in the South East 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
Jack Crockford
Youth Worker (Berkshire, Hampshire, Oxfordshire
Sirumpa Waranon
Youth Worker (Buckinghamshire, Kent, Surrey, Sussex)
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.
Berkshire support group
The Huntington's Disease Association Berkshire support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area.
We are a small group spread over Berkshire Including Reading, Maidenhead, High Wycombe. We also cover Camberley in Surrey.
Colchester and District support group
Welcome to the Colchester and District support group of the Huntington’s Disease Association. We have been offering support and advice to local people affected by Huntington’s disease for a number of years.
The meetings are attended by anybody affected by Huntington's disease or wanting to find out more information.
Hampshire and the Isle of Wight branch
Since 1994 our aim is to provide local families affected by Huntington's with a cuppa, chat and company. People can talk about what is happening to their families knowing that the others there know what they are going through.
The local Specialist Huntington's Disease Adviser, Eve Payler, also attends meetings when she can.
Before Covid, we held monthly carers meetings and bi-monthly branch meetings which have been replaced by online Zoom meetings. We also have social events such as BBQs, pub meals, picnics, and boat and theatre trips some of which are subsidised. We also organise subsidised events to get young people together such as activity days and spa days.
Our past secretary, the late Hugh Marriott wrote: “The Selfish Pigs Guide to Caring” recommended for all carers.
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. 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. The group is focused on the needs of the members and between us we have a wealth of experience to share. No one needs to feel alone.
We are able to offer welfare grants for household items, school uniforms, starting university, and also grants to enable families to ‘make memories’ e.g. by having a special day out. To find out more please download the grant information sheet.
Keep up to date with news and events:
Where we meet
TBC
Key contact
Specialist Huntington's Disease Adviser
Eve Payler
02380 612 218
Hertfordshire support group
This is a pop-up group which takes place approximately three or four times a year. It is an informal get-together for anyone affected by Huntington's disease, offering opportunities for peer support and friendly chat. Light refreshments are included. The specialist adviser for the area attends.
This varies, but meetings usually take place on a Saturday. If you would like to be added to the mailing list, please email Rachel Boothman.
Key contact
Specialist Huntington's Disease Adviser
Rachel Boothman
01536 211496
Milton Keynes support group
The Huntington's Disease Association Milton Keyne support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area.
We meet for monthly Sunday pub lunches, these are informal meet ups for people with Huntington's disease and their families. It’s very informal and you don’t have to get lunch, you can just come for a coffee/drink if you want.
There are people from Milton Keynes, Bedford and Luton areas attending and about 35 people in the group, normally 10 – 15 attend each month.
North Kent support group
The Huntington's Disease Association North Kent support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area.
We are occasionally joined by guest speakers. Join them for light refreshments, hot drinks and a chat.
If you are interested in attending, please email Maura on northkenthdagroup@gmail.com so that she knows how many number to expect.
The church is situated on the junction with Updale Road. Parking is available on-site with the entrance on Updale Road.
Orchard House Herne Bay support group
Where we meet
When we meet
Key contact
Linda Ironside
07713322604
Specialist Huntington's Disease Adviser
Tracey Hole
07900922527
tracey.hole@hda.org.uk
South End branch
Where we meet
When we meet
Key contact
Specialist Huntington's Disease Adviser
Dawn Stilwell
07900922528
dawn.stilwell@hda.org.uk
Useful services
Milton Keynes (Buckinghamshire)
The Neuro Clinical Specialist Team (NCST)
- A team of specialist nurses, Allied Health Professionals and an assistant, who support adults
diagnosed with a neurological condition including Huntington’s disease. - Educate patients and their families about their condition, to support self-management
- Regular reviews (including medication)
- Appropriate signposting and referral
- Carer support
- Telephone advice
Contact
Phone: 01908 724633
Email: cnw-tr.mkneuro@nhs.net
Website: cnwl.nhs.uk
Oxfordshire
Community Neurology Specialist Nurse Team
- A team of Community Neurology Specialist Nurses, each one leading on a particular neurological
condition. - Provide advice, guidance and support for people and their families living with long-term
neurological conditions, locally, when and where it is needed. - Nurse-led clinics around Oxfordshire and South Northamptonshire - to provide sensitive
assessment, problem-solving and support. This may include referrals to other services where
required. - Home visits (where appropriate).
- Free support, advice and education to community healthcare professionals and other
residential and social care providers in the community.
Contact
Phone: 01865 737465
Email: ouh.cnsns@nhs.net
Website: ouh.nhs.uk
Surrey
Huntington’s Disease Multidisciplinary Clinic
A specialist clinic for people who live in South West London, Surrey or West Sussex who either have, or are at risk of developing, Huntington’s disease, and their families and carers.
People are seen for the following reasons:
- To give advice, information, social and emotional support
- For genetic counselling (people at risk of Huntington's)
- For prenatal genetic testing/referral for Preimplantation Genetic Diagnosis
- For management of symptoms
- To give information and the opportunity to take part in current research projects in
Huntington’s disease, if appropriate
Contact
Phone: 0208 725 3343 / Patricia Ribeiro 07824 583384
Email: hdclinic@stgeorges.nhs.uk
Website: stgeorges.nhs.uk
West Sussex
Huntington’s Disease Multidisciplinary Clinic
A specialist clinic for people who live in South West London, Surrey or West Sussex who either have, or are at risk of developing, Huntington’s disease, and their families and carers.
People are seen for the following reasons:
- To give advice, information, social and emotional support
- For genetic counselling (people at risk of Huntington's)
- For prenatal genetic testing/referral for Preimplantation Genetic Diagnosis
- For management of symptoms
- To give information and the opportunity to take part in current research projects in Huntington’s disease, if appropriate
Contact
Phone: 0208 725 3343 / Patricia Ribeiro 07824 583384
Email: hdclinic@stgeorges.nhs.uk
Website: stgeorges.nhs.uk
West Berkshire
Clinical Nurse Specialist for rare neurological illness including Huntington's disease
- Information about your illness.
- Advice and support for you, your relatives, carers and friends.
- Advice on your continued care at home.
- Help with physical symptoms.
- Refer you to other services that may be able to help you, such as occupational therapy,
physiotherapy, speech and language therapy, wheelchair clinic and more. - Advice and support when making decisions about specific interventions.
- Signposting to services that can help to apply for benefits.
- Liaison with charitable organisations, especially those pertinent to your illness.
Contact
Phone: 0118 322 8707
Email: caroline.crowley@royalberkshire.nhs.uk
Website: royalberkshire.nhs.uk
Wessex
Southhampton 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.
Contact
Phone: 07824 607242 (Tues/Wed/Thurs)
Email: fiona.chaabane@uhs.nhs.uk
Website: uhs.nhs.uk
