Debra Robinson
Greater Manchester, Cheshire
Support in the North 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 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
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.
Manchester support group
The Huntington's Disease Association Manchester support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area. This includes individuals with the disease, family members, friends or carers.
The aim is to provide local families affected by Huntington's with a cuppa, chat and company. Everyone sits and chats about what is happening to them at the moment knowing that the others there know exactly what they are going through.
Visit our Greater Manchester and Chester Facebook page
Where we meet
Adswood Lodge
60 Adswood Lane West,
Stockport
SK3 8HZ
When we meet
We aim to vary the days and times we meet as a group, please see below for our upcoming group dates:
Saturday 16 August between 2pm - 4pm
Wednesday 15 October between 7pm - 8:30pm
Thursday 04 December between 7pm - 8:30pm
Key contact
Clare Braithwaite, Support Group Leader
Specialist Huntington's Disease Adviser
Debra Robinson
01477 534434
debra.robinson@hda.org.uk
Merseyside branch
All of our branch meetings are informal and provide a relaxed environment for people to talk if they wish. On occasion, we have health care professionals giving talks on many topics relating to Huntington's disease. Our local Specialist Huntington's Disease Adviser, Lucy Clarke, also attends meetings when available.
Where we meet
Kavanagh Place
1 Rumney Road
Kirkdale
Liverpool
L4 1UB
When we meet
We meet the last Wednesday of the month, except in August and December, between 7:30pm - 10.00pm.
Key contact
Contact our branch on merseysidehdabranch@gmail.comChair: Christine Clarke - 07789 484 429
Secretary: Shelagh Lucking
Treasurer: George Thorman
Specialist Huntington's Disease Adviser
Preston support group
The Preston Support Group have been together since 2009. We are there to support each other and offer advice. We meet regularly and outside speakers attend to provide free expert advice and information. People attend as and when they want or as and when they can.
We have seasonal themes; i.e. Easter and Christmas quizzes, cream tea in June and social events outside the meetings. Please come and join us for a brew and a chat and do not hesitate to contact us if you would like any further information.
Where we meet
Crystal Hall Care Home
Whittingham Hospital Grounds,
Whittingham,
Preston,
PR3 2JE
When we meet
We meet on the first Monday of the month, except January and February, between 6pm - 8pm.
Key Contact
Support Group Leader – Alison Ashton
prestonhdagroup@gmail.com
Specialist Huntington's Disease Adviser
Theresa Westhead
01942 864 645
theresa.westhead@hda.org.uk
Useful services
Merseyside and Cheshire
Neurogenetic disorder clinics: Walton Centre
The Walton Centre runs a clinic for patients with a range of neurogenetic disorders including Huntington’s disease.
Integrated Neurology Nurse Specialists (INNS)
These nurses cover the whole of Cheshire and Merseyside. Patients must have already been seen by a consultant from The Walton Centre before using the INNS service.
- Provide advice and support regarding long-term neurological conditions.
- Assess patients and work with them to manage their symptoms
- Arrange home visits for patients physically unable to attend clinic
- Provide education to patients and health care professionals about long-term neurological conditions
- Prescribe medication
- Provide a link between community care and specialist care so all services are working together to get the best care for the patient
- Signpost to other services e.g. help patients, carers and families get in touch with their local authority (council) for advice such as housing/benefits advice
- Hold telephone consultations with patients, carers and their families
Greater Manchester
North West Regional Huntington’s Disease Multi-Disciplinary Service
The Huntington’s Disease Multi-Disciplinary Team is focused on providing the best care possible to people who have or are at risk of developing Huntington’s Disease (HD), their families and carers.
They provide advice on genetic testing, the treatment and management of symptoms and access to support.
Greater Manchester Neuro-rehabilitation services
Provide a process of assessment, treatment and management.
Aim to help the patient achieve their maximum potential following a diagnosis of a neurological condition.
Support patients with neurological conditions through their rehabilitation journey.
North Cumbria
Community neuropsychiatry team
(plus access to specialist clinic, genetics service and inpatient beds)
The Neuropsychiatry Outpatient Team is a specialist, planned care service which offers assessment, signposting and short term interventions to people with a neuropsychiatric condition which may arise as a result of Huntington’s disease or other conditions.
16 bedded neuro-psychiatry unit for assessment and treatment of neuro-psychiatric consequences of brain injury acquired in adult life and regional service for the assessment, diagnosis and management of Huntington’s disease.
Cheshire and Wirral
Neurotherapy centre
The Neuro Therapy Centre is a charity that provides support to people with long-term neurological conditions and their Carers. They offer services such as physiotherapy, relaxation sessions, mental health support and talking sessions. They also offer specific support to carers.
The Wirral Memory Assessment Service
Provides assessment for people who have suspected or diagnosed cognitive impairment, including problems with forgetfulness, confusion, language and behaviour.
Manchester
Neuropsychology
The service:
- Provides a confidential and safe place to talk about your condition, how it feels, and how it affects your life
- Completes in-depth assessments of your thinking skills, to advise on cognitive strengths and weaknesses or to inform medical diagnoses and treatments
- Works together with you to develop strategies to help manage day-to-day life.
Merseyside
The Brain Charity
Provides practical help on all aspects of living with Huntington’s disease, emotional support such as counselling, phone befriending and group therapy and social activities to people with Huntington’s from all over the UK from their centre in Liverpool.
Liverpool Carers Centre
Liverpool Carers Centre undertakes carers assessments and offers a flexible support service that provides impartial advice and information.
