Diana King
Nottinghamshire, Lincolnshire
Support in the East Midlands
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
Ian Wilkinson
Youth Worker (Derbyshire, Leicestershire, Lincolnshire, Nottinghamshire)
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.
Derbyshire support group - Treetops
The Huntington's Disease Association Derbyshire support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area. It's an opportunity to connect with your local adviser and meet other families living with Huntington’s disease for peer and professional support. Light refreshments and hot drinks will be available.
Northamptonshire support group
The Huntington's Disease Association Northamptonshire 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.
People need to know they are not alone and that there are others living with this. We meet on a monthly basis to bring people together in order to support each other. Empowering people to make choices, share stories and get the help and support they need. We usually enjoy tea and cake and we sometimes have speakers who are able to come along and tell us about areas of interest for group members.
Nottinghamshire branch
The Huntington's Disease Association Nottinghamshire branch is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area.This branch was set up over twenty years ago.
The group is open to anyone whose life has been affected by Huntington's disease. We're a sociable and friendly group who meet up regularly to provide support and friendship to each other. New members are always welcome.
North Lincolnshire support group
The Huntington's Disease Association North Lincolnshire support group was founded in 2018 and 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.
People need to know they are not alone and that there are others living with this. We meet on a monthly basis to bring people together in order to support each other. Empowering people to make choices, share stories and get the help and support they need.
A Facebook page was also set up so people can interact and keep in touch with each other and not just at the meetings.
Useful services
Nottinghamshire
Movement Disorder Service
The Movement Disorder Service operates at both QMC and City Hospital
Mid Notts Community Neurorehabilitation Service
Provide a period of rehabilitation at Mansfield Community Hospital for people who are medically stable and need support from a number of different professionals.
Bassetlaw Community Neurorehabilitation and Stroke Team
Provide assessment and rehabilitation services for adults who have a long-term neurological condition
Nottingham City Community Neurology Service
The Community Neurology Service provides support people to manage a long term neurological condition and to live as independently as possible. We aim to increase the number of people with a long-term neurological condition able to live independently, or with support such as with their carers.
Nottinghamshire Clinical Genetics Team
Lincolnshire
Rehabilitation Medicine: Community Neuro-Outreach Service
A county-wide Outreach Team working within the Rehabilitation Medicine Service in Lincolnshire. Provide a specialist interdisciplinary assessment for adults with a long-term Neurological condition.
- Lincoln Neuro Outreach Team – 01522 573698
- Boston Neuro Outreach Team – 01205 446411
- Grantham Neuro Outreach Team – 01476 464971
- Louth Neuro Outreach Team – 01507 631455
Rehabilitation Medicine Service
Navigo – NE Lincolnshire’s mental health services
- Community Mental health team
- Crisis team
- Neuropsychiatry
- Psychology
Leicestershire
Mill Lodge Huntington’s Disease Inpatient and Community Service
The Huntington’s Disease Community Nursing Team can see patients in their own homes or at a venue to suit the client. They also hold a multi-disciplinary clinic every month as well as a monthly research clinic.
Community inpatient unit
The unit is for people with Huntington’s disease. Patients have severe and enduring mental health needs and require complex care due to physical, psychiatric, behavioural and psychological needs or rehabilitation
Carers support – VASL
A local charity, offering support to carers, including:
- Telephone advice line
- Assistance in completing carers assessment
- Website and self help videos
- Information on carers support groups
Derbyshire
Speech and language therapy for adults
We work with adults who have: communication difficulties arising from neurological conditions or eating, drinking and swallowing difficulties arising from neurological conditions
Community occupational therapy and physiotherapy
We provide physiotherapy and occupational therapy assessment, treatment and advice for individuals in their own home, working jointly with patients and their carers to establish goals and priorities.
Integrated community service
An Integrated Community Team includes district nursing, community nursing, community therapy (physiotherapy and occupational therapy), community matrons, care co-ordinators, rapid response nurses, wound clinic nurses, end of life care nurses and in some areas specialist therapy (eg neurological physiotherapy) staff as well as healthcare support workers and administrators.
Continence services
Our service is open to adults registered with a GP in Derby City and Derbyshire County with clinics at various locations across the county. The service offers a home visiting service for those who are housebound or residing in residential care.
Team Up including Ageing Well
intensive support to people who require care in their own homes because they require support with daily living or are physically unable to get to their GP surgery. It involves advanced clinical practitioners, council social workers, district nurses, home carers and a local GP.
Derbyshire Law Centre
Access to justice, providing legal services in social welfare law in the Derbyshire area.
Ares of support include:
- Housing
- Debt
- Employment
Mental Health Helpline and Support Service
Derbyshire - South
Neurology
The Huntington’s disease clinic is run by Dr Phillips, Consultant in Specialist Rehabilitation Medicine at Florence Nightingale Community Hospital, Derby.
Referrals should be requested via the GP.
Derbyshire – North
Neurology
specialised multidisciplinary clinics for Huntington’s disease with input from Liaison Psychiatry, Clinical Genetics. Referral is requested via the GP.
Northamptonshire
Mill Lodge Huntington’s Disease Community Service
Our Huntington’s Disease Community Nursing Team can see patients in their own homes in Northamptonshire or at a venue to suit the client. We also hold a multi-disciplinary clinic every month as well as a monthly research clinic.
Community Therapy Service
This countywide service offers individual rehabilitation for adults with a long-term condition including neurological conditions.
Adults - Speech and Language Therapy
Specialist Dental Services: Adults
We provide support and treatment for adults who are unable to access the general dentist. For example, adults who may have special needs, learning disabilities, significant health problems or other issues.
Northamptonshire carers
Provide
- Carers support line
- Carers groups
- Young carers services
- Community Companions (volunteers to sit with a loved one)
The Mental Health Number (Integrated Mental Health Hub)
A 24 hour telephone support service for people in Northamptonshire experiencing mental health problems, their carers, families and friends. Their service helps when you feel unsafe, at risk, or unable to cope without support. Provides emotional support, accepts referrals and works with those also already open to mental health services.
0800 448 0828
Community Law Service Northampton and County
Community Law Service is a registered charity and an independent specialist social welfare advice provider. The aim of the organization is to improve the health and wellbeing of local residents through tackling social and financial exclusion, alleviating poverty and advancing education. This is achieved through the provision of specialist advice, casework and representation currently in fields of Welfare Benefits, Debt, Financial Capability, Energy Advice Housing and Immigration.
Clinical Genetics
Northampton Clinical Genetics is part of the Leicestershire-Northamptonshire-Rutland Clinical Genomics Service and serve the population of Northamptonshire. We offer a comprehensive service supporting individuals and families undergoing investigation for new and inherited genetic conditions.
Together for mental wellbeing
Northants Intermediate Mental Health Floating Support Service offers time limited support in the community. The service is for adults, with mental health needs, to enable individuals who have mental health needs to meet their identified goals. They also offer group sessions and peer support.
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.
Goodman House (Landermeads)
Services
Provides high-quality services for younger adults who have nursing and complex support needs to live well and live life to its fullest.
Greenside Court
Services
Greenside Court is a specialist care home in Greasbrough, Rotherham for adults living with complex and high acuity needs. Greenside Court specialises in supporting adults living with physical disabilities and neuro-disabilities including Huntington’s disease.
Website
Address
Greenside, Greasbrough, Rotherham S61 4PT
