Support Groups (P21)
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Support Groups (P21) Torbay Disability Information Service Torbay and South Devon NHS Foundation Trust 4th Floor, Union House Union Street Torquay TQ1 3YA Tel: 0300 456 8373 Email: [email protected] 0 P21 – April 2017 This is a controlled document. It should not be altered in any way without the express permission of the author or their representative. On receipt of a new version, please destroy all previous versions. Document Information Date of Issue: 9 November 2020 Next Review April 2021 Date: Version: 20 Last Review April 2017 Date: Author: Christine Evenden, Disability Information Service Directorate: Operations Important: Please ensure that you are using the latest version of this information sheet. To check this, go to our information sheets page on the Trust website at www.torbayandsouthdevon.nhs.uk/disinfosheets or call the Disability Information Service on 0300 456 8373. 1 P21 – April 2017 Contents Subject Page About this sheet 3 Who is this information sheet for? 4 Disability and long-term condition groups 6 Carer support groups 23 Patient support groups at GP surgeries 32 User involvement groups 33 Other titles in this series 35 Further information and advice 36 Feedback sheet 37 2 P21 – April 2017 About this information sheet This is one of a series of regularly updated local information sheets that aim to meet the most common information needs of people with disabilities and carers in Torbay. Where possible, we try to keep our information up to date. However, we cannot guarantee that all of our information is constantly up to date - details change often and there may be changes to services of which we are not aware. If you know of a change to any of the services listed please advise us of this so that we can amend the details. The information should be used as a guide only, as it may not cover all the organisations that can help with your needs. Torbay Disability Information Service (part of Torbay and South Devon NHS Foundation Trust) cannot guarantee the accuracy of the information or the quality of service provided by the organisations. No liability can be accepted for loss, damage, or injury arising out of any contract made by a private individual with any of the organisations listed. Details change often, so please make sure you are using the current edition. Latest copies of the sheets are published on the following website page: www.torbayandsouthdevon.nhs.uk/disinfosheets If you do not have Internet access, you can ask for single copies from our office. A full list of our other information sheet titles can be found at the end of this sheet. Information can be made available in other formats and languages. Please let us know what your needs are. Torbay Disability Information Service 4th Floor, Union House Union Street Torquay TQ1 3YA Telephone: 0300 456 8373 Email: [email protected] 3 P21 – April 2017 Who is this information sheet for? This information sheet is for anyone who wishes to find out about groups in Torbay that provide support to: • People with specific disabilities and /or long-term health conditions • Patients of GP surgeries, that provide practical voluntary services • Unpaid carers looking after adults (or children) with disabilities The information sheet also provides details of local user involvement groups. What do support groups do? Disability support groups There are a number of helpful organisations, both in Torbay and beyond, that support people with disabilities, but the focus of this section is support for specific conditions. An effective support group should be easily contactable and offer the following: • A membership willing to participate in the group’s administration • A welcome for anyone with an interest in the condition supported • Meetings within reasonable travelling distance • Self-help and peer group support • Accurate and current information (leaflets, booklets, etc.) • Speakers • Newsletters • A social element Most groups offer refreshments and you can normally expect to pay a membership fee to cover expenses. Some groups will be linked to national organisations and some may also be involved with local health and social care services to develop self-management approaches to long-term conditions. If you cannot find a local group, why not start your own? There are local meeting venues for hire, free publicity channels (including this information sheet) and other support. If you need advice please contact us at Torbay Disability Information Service on 0300 456 8373. If you do not wish to get involved with a local group, you will find good advice and information is available from national organisations. The website, www.patient.co.uk provides full listings. Contact us for details if you do not have internet access. Patient Support groups These groups, attached to some GP surgeries, offer practical services to patients of the practice who find it difficult to undertake everyday tasks. Some 4 P21 – April 2017 may also include a social element. They are normally reliant on volunteers to keep the group going and cannot help everyone. Carer Support Groups These groups exist to provide an opportunity for unpaid carers to get together to chat about how they are managing, benefit from the experience of other members and find out about appropriate services and support. They generally only cater for carers, as part of their remit is to offer a break from caring. Please note that specific condition support groups for children and young people are also included in this section, including those that provide activities for children/ young people. Do you organise a group? If your group supports people in Torbay and is not listed here, we would be interested in hearing from you so that it can be included in the next update. Symbols For ease of reading, the sheet includes the symbols below: = telephone = web address = email address 5 P21 – April 2017 Disability and long-term condition groups The following alphabetical index indicates if a local group exists. Condition Supported Local Organisation Acquired Brain Injury Headway. See also Carer Support section ADHD See Carer Support section Autism See Carer Support section Alzheimer’s Disease Alzheimer’s Disease Society, Devon and Torbay Arthritis Arthritis Care, Torbay Dimensions for Autism. See also Carer Support section Asperger’s Syndrome and information sheet P33. Lodge Cancer Support Centre, Marie Curie Devon Cancer Helper Service, Prostate Support Association Cardiac Happy Hearts and Heartbeaters Support Groups Child conditions See Carer Support section Crohn’s and Colitis Torbay Crohn’s and Colitis UK Alzheimer’s Disease Society, Memory Cafes, Singing for Dementia the Brain, Filo Project. See also Carer Support section. Diabetes Diabetes UK, South Devon Voluntary Group Parents of Deaf Children Deafness Also see ‘Leisure’ information sheet (P28) Down’s Syndrome Down South Dyslexia See Carer Support section Dystonia Dystonia Society – Torbay and Exeter Support Group Eating Disorders Torbay Eating Disorder Support Group Eczema Eczema Support - Torbay Epilepsy Epilepsy Action - Torbay Coffee and Chat Group Huntington’s Disease Huntington’s Disease Association – Devon Laryngectomee South Devon Laryngectomee Club Learning Disabilities Mencap Society, Torbay See also Carer Support section Lung Disease Breathe Easy Marfan Syndrome Marfan Association UK ME/CFS ME, CFS and Fibromyalgia Support Group, Torbay Memory Cafés (Alzheimer’s Society and Torbay Memory Problems Dementia Action Alliance ) Bravo Café, Fresh Hope, Torbay Bipolar Group, Torbay Bravo Help and Hope Groups, Triumph over Phobia Mental Health See also Carer Support section and Torbay Mental Health Directory Motor Neurone Disease Motor Neurone Disease Association Multiple Sclerosis (MS) Multiple Sclerosis Society, South Devon Myasthenia Gravis Myasthenia Gravis Association – South Devon Parkinson's Disease Parkinson's UK – Local Support Groups & Information Pituitary Disorders The Pituitary Foundation – Plymouth, Exeter and Truro Pre & Postnatal Illnesses Torbay PANDAS Sight Loss VisualEyes Torbay (Macular Society), Devon in Sight Stoma Devon Ileostomy Association Different Strokes, Torbay Stroke Support Stroke Stroke Association: Torbay Stroke Recovery Service Tourette Syndrome Tourettes Action. 6 P21 – April 2017 A - Z of Groups Please note that this section does not include: • Groups for people with disabilities that meet primarily for social purposes, e.g. social clubs for deaf or visually impaired people. See ‘Leisure and Day Opportunities’ sheet (P28) • Fitness support for people with disabilities. See ‘Gentle Exercise’ sheet (P22) • General disability or age-related groups • Telephone helplines Contact our office if you are not sure what you are looking for. Group details can change frequently so please confirm details with organisers before attending an initial meeting. NB. Due to coronavirus, many groups are not meeting or may be meeting online only – please contact the organisers direct for latest details. Addiction Support For details of support for people with alcohol and drug addictions and those who support them, please refer to our information sheet ‘Caring for Someone with an Alcohol or Drug Problem’ (P31). Alzheimer’s and Dementia Support Alzheimer’s Society - Devon and Torbay Dementia Adviser Service Provides information, advice and support, including a Dementia Adviser Service, to people with Alzheimer’s disease and other forms of dementia, their carers and families. Offers personal one-to-one emotional, telephone and peer support, including regular drop-in Memory Cafes around Torbay and a regular Singing for the Brain session (see below). The Alzheimer’s Society also provides a range of education packages for carers and for people living with a dementia. Dementia Adviser Service, 0300 123 2029 (Monday to Friday, 9.00 am - 5.00 pm). [email protected] NB. Due to coronavirus, this phone line won’t be staffed until further notice. Please contact the Dementia Connect Support Line on 0333 150 3456 for advice or to be referred to local advice and services. Alzheimer’s Society Memory Cafés in Torbay and Singing for the Brain Alzheimer’s Society Memory Cafés Free drop-in services for people with dementia, their carers, family and friends.