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LONG TERM CONDITION SUPPORT GROUPS ON IW
GENERAL SUPPORT
John Cheverton Information and Support Centre, Earl Mounbatten Hospice
Health conditions covered – all life limiting conditions
The centre is open to anyone and everyone affected in anyway by any potentially life limiting illness (this includes relatives, friends, carers and health care professionals). It is open Monday – Friday 10am-4pm on a drop in basis and has been designed to offer contact, support, information, direction and help. Someone will always be available to listen to you and discuss your needs. We warmly welcome everyone to the centre or alternatively please telephone
Contact Main reception 01983 535320 Information and Support 01983 535319
Carers Isle of Wight
Health conditions covered – Support and Advice for any unpaid Adult Carers of Adults
Contact Elizabeth Martin01983 533173 [email protected] www.carersiw.org.uk
ALCOHOL SUPPORTAl Anon, Isle of Wight family groups
Health conditions covered – Al Anon provide support to families surviving alcoholism.
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Contact through the central office on020 7403 0888 [email protected] http://www. al-anonuk.org.uk
Weekly Al Anon family meetings take place at IDAS, 102 Carisbrooke Road, Newport PO30 1DB at 7.30 pm on Mondays and 7.45 pm on Wednesdays at Arthur Webster Clinic, Landguard Manor Road, Shanklin PO37 7HZ. These meetings are drop in sessions and you can just turn up.
ARTHRITIS Isle of Wight Rheumatoid and Inflammatory Arthritis (NRAS) Group
Health conditions covered - Inflammatory Arthritis: Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis
Contact Hayley Bartlett07708469764 [email protected] www.iwrias.org.ukIsle of Wight Rheumatoid and Inflammatory Arthritis (NRAS) Group have a page and group set up on Facebook.
Young Arthritis Support (IW)
Health conditions covered - Arthritis
Contact Mark Earp521766 [email protected]
Not a support group but an outreach support service providing information, practical support; help with benefits applications and signposting. Support is offered on a 1:1 basis for people aged 1 – 55.
AUTISM
AIM
Health conditions covered - AIM is a group on the Isle of Wight for adults (over 18) who have Autism or Asperger’s, also known as an Autistic Spectrum
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Disorder (ASD) or Autistic Spectrum Condition (ASC). It is not a group for parents or carers, or professionals. AIM is a user lead group. This means that with support, people who have ASD will decide what happens in the group and help to run the group.
This social group is aimed at helping people who have ASD who may feel lonely, or find it difficult to meet people and make friends. The group will choose where to meet together and what activities to do. We will support members to find people who have shared interests, and build friendships. We hope to have a range of activities that are chosen by members.
We also have an advocacy group, to listen to what adults with ASD have to say about life on the Isle of Wight, and to make changes.
Contact 01983 523000 and ask to speak to the AIM coordinator. [email protected]
ASTHMA
Isle of Wight Asthma Swim group
Health conditions covered - Asthma
The Isle of Wight Asthma Swim group was formed in 1984 by the Isle of Wight Branch of what is now Asthma UK to encourage people with asthma to enjoy exercise. Swimming is known to be the least provocative exercise for asthmatics. Sunday swims are at Medina Pool every 2nd and 4th Sunday of the month 12.30 to 1.30pm.
Contact Liz Bell 01983 564356
CANCERPenny Brohn Cancer Care – Living Well with Cancer
A Penny Brohn Living Well Course can help you to gain a sense of control and make positive changes by finding your own way to live well with the impact of cancer. It has been designed to work alongside your medical treatment, providing you with support at any stage of your cancer journey; before, during and after treatment. It is offered free and is available to anyone and their close supporter whose life has been impacted by cancer.
Contact Penny Brohn Cancer Care: 01275 370 100 Helpline 0845 123 2310 www.pennybrohncancercare.org
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Email: [email protected] [email protected] (local contact)
Bowel cancer – Semi Colon Group
Health conditions covered – Bowel cancer support, including carersContact Mr A C Crowson [email protected] www.semicoloniow.org
Applegate Breast Care Support Group
Health conditions covered – Breast Cancer
Contact Mary Seymour 07814699470 or 290206 [email protected]
The group meets at the Riverside Centre, Newport on the first Thursday of every month between 10.30 – 12.30. The support group consists of a group of women in similar situations who meet on a regular basis to share their concerns. Refreshments are available. Different topic of interest discussed every month.
Apple Blossoms
Health conditions covered – All cancers
Apple Blossoms is a social group for women under 55 diagnosed with any type of cancer.
Contact: text Dawn 07792215150 text Julia 07533518210 [email protected]
Head and neck cancer support group
Health conditions covered – All head and neck related cancer patients and their carers, family and friends. Currently meeting at the John Cheverton Centre.
Contact Mrs June Ring 01983 761610Mrs Mary Seymour
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07814699470
Prostate & other Urology Cancer Support Group, IW
Health conditions covered – All patients, carers and friends of those with Urological cancers but predominately Prostate Cancer. Support Group meetings are held on the 3rd Thursday of every month (excepting December) 6 p.m. at Wessex Cancer Centre, Lugley St., Newport."
Contact Dave Kiely 01983 407662 [email protected] www.isleofwighturologycancersupportgroup.org.uk
Upper GI cancer Support Group
Health conditions covered – All those with upper gastrointestinal cancers, carers, friends and family. Currently meeting at the John Cheverton Centre.
Contact Mrs June RingUrsula Clark 01983 761610
Skin cancer support group
Health conditions covered – All those with skin cancers, their carers, family and friends. Currently meeting at the John Cheverton Centre
Contact Mrs June Ring 01983 761610Mrs Mary Seymour 07814699470
CARRIAGE RIDING FOR THE DISABLEDIOW Carriage Riding for the Disabled
Health conditions covered – Isle of Wight carriage driving for the disabled was formed in 1974 with the aim of offering the experience of carriage driving to any disabled adult who might get benefit in their health, happiness and well-being. The group meets on Wednesdays at Osborne House. The driving starts at 10.30 and finishes at 3 in the afternoon. There is a £10 membership fee and each session costs £2.
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Sue Martin 07788100687 www.iowrda.org [email protected]
DEMENTIAAlzheimer Café Isle of Wight
Health conditions covered - Dementia – all types
Contact Katy Peplow01983 220200 [email protected] www.alzheimercafeiow.org.uk Facebook – AlzheimerCafeIOW Twitter - @AzCafeIOW
An Alzheimer Café is a form of group support for people with Dementia, their families and friends.Its purpose is to provide psychological education about Dementia in a café style setting and create opportunities for people to ‘stay connected’ with each other.
There are six Cafes Island wide with a 7th due to open September 2015:
COWES- 2nd Wednesday monthly 2- 4.30pm The Masonic Centre, Castle Road, Cowes. PO31 7QY
NEWPORT- Last Thursday monthly 6pm-830pm St John’s Church Hall Nodehill Newport PO30 1EQ
RYDE- 1st Friday monthly 1130am-2pm All Saints Church, Queens Road, Ryde PO33 3BG
TOTLAND- 3rd Wednesday monthly 2-4.30pm St Saviour’s Holy Family Centre, Weston Lane PO39 0HE
SANDOWN- 2nd Tuesday monthly 6pm-8.30pm The Methodist Church York Road Sandown Po36 8ET
VENTNOR- 1st Wednesday monthly 2-4.30pm Baptist Church, Pier Street, Ventnor PO38 1SX
ACE 7 – An Alzheimer Café for younger people with early onset dementia and their carers meeting at Red Cross House, Hunnyhill, Newport. See Facebook page for details.
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DIABETESDiabetes UK Isle Of Wight Support Group
Health conditions covered - Diabetes
Contact Heather 07974246147 [email protected]
Local branch of Diabetes UK. The group meet on a monthly basis with informative lectures and to enable people to meet each other.
Diabetes X-pert Courses on the Isle of Wight
The Diabetes X-pert course runs over 6 weeks for 2.5 hours per week. You will elarn about up to ate treatmenst and the management of Diabetes, and you’ll have opportunities to explore and address issues that you may have with your diabetes. To book a place please call:
David and Sylvia Ray 01983 521017Or 0800 988 5560
DOWN’S SYNDROMERainbow Club
Contact Clare Williams 01983 568601 www.iowrainbowclub.com
EHLERS-DANLOS SYNDROMEEhlers-Danlos Support UK
Health conditions covered – Ehlers-Danlos syndrome (EDS) is a genetic disorder in which the structure of connective tissue is abnormal due to a gene mutation. This results in abnormally fragile and hyper-extensible tissues throughout the body which can lead to a range of multi-systemic symptoms. The effect of the body is widespread and not limited to one body system.
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Contact Local contact: Leigh Jackson 07780440459 [email protected] National Helpline 0800 907 8518 [email protected]
FIBROMYALGIA
Isle of Wight Fibromyalgia Support Group
Health conditions covered FibromyalgiaChronic Fatigue SyndromeME
The group meets on the 2nd Tuesday on the month (except August and December) at 1.30 until 4pm All Saints Church, Ryde. Cost is £3 per meeting which includes refreshments. Carers go free to first meeting, discounts apply for subsequent meetings. Lending library and Monthly newsletter available.
Contact Karen Smith 0844 887 2346 [email protected] www.isleofwightfibromyalgia.webs.comFacebook Fibromates-Isle of Wight Fibromyalgia Support GroupFacebook Friends of Fibromates IW for friends, or family of sufferers & non-members with FM, CFS and ME
HEARING IMPAIRMENTAction on Hearing Loss Sensory Service IOW
Health conditions covered Action on Hearing Loss Sensory Service Isle of Wight provides support services to adults living with hearing loss or dual hearing and sight loss on the Isle of Wight on behalf of the Isle of Wight Council.
Diagnosed hearing loss (either privately or through the NHS).8
Dual sensory loss (deafblind).
Contact Ann Emery, Service Manager 01983 529533, Textphone: 01983 529998 [email protected] www.actiononhearingloss.org.uk
Services include free home assessment and free equipment loan service based on the assessment of needs, mobility training, access to specialist advice and support for anyone with a sensory loss, befriending and coffee mornings and monthly drop in clinics across the Island for maintenance of NHS hearing aids.
HEART DISEASEIsle of Wight Heart Care Club
Health conditions covered - All heart conditions
Contact Mrs Lyn Smith 01983 296091 [email protected] www.islandheartcareclub.org.uk
Heart2Heart
Heart2Heart is for people who have heart failure and their carers. It meets on the second Thursday of the month at Wootton Methodist Church, Station Road, Wootton. There is some parking at the church and the car park opposite can be used. Costs are £2 per person and refreshments are available.
ContactMichael Jones [email protected] Brown 01983 289665.
KIDNEY PATIENTS The Isle of Wight Kidney Patients Association IWKPA
Health conditions covered – The Isle of Wight Kidney Patients Association (IWKPA) was formed in 1983. The association is run entirely on a voluntary
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basis and is open to all Island renal patients at any stage of treatment. There are social events and activities running regularly.
Contact Ann Daly 01983 611671Claire Allaway 01983 822351 [email protected] www.iwkpa.com
M.E. – MYALGIC ENCEPHALOPATHY/CHRONIC FATIGUE SYNDROME
Hampshire Friends with M.E./ CFS Support Group
Health conditions covered – Hampshire Friends with M.E. provides support to people living with ME/CFS, including relatives and carers. The Isle of Wight group meets on a monthly basis at the Lord Louis Library, Newport between 1.30 and 3.00pm. ContactVicky Mould0845 834 0325 www.friendswithme.org.uk [email protected] page: https://www.facebook/com/groups/6238483682/
NEUROLOGICAL CONDITIONS
Ataxia
Contact Alan Reed 01983 867946 [email protected]
Epilepsy Society (Isle of Wight)
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Health conditions covered – Epilepsy. Group meets the first Saturday of every month at the Riverside 10 – 12 o clock.
Contact Dave Piggott 01983 405825 [email protected] National Helpline 01494 601400
Headway Isle of Wight
Health conditions covered - Head injury. We support anyone who has suffered a brain injury, the families and carers. Meet first Saturday of the month at Riverside from 10 to 12 pm. They have an additional varied programme more details by contacting Joy on telephone below.
Contact Mrs Joy Cleightonhills 01983 874651 [email protected] Facebook - Headway IOW
Huntington’s disease Association
Health conditions covered - Huntington’s Disease. The local branch is an informal group which provides support to individuals, families and friends affected by HD through a variety of events including carers meetings, family days and social activities.
Contact Eve Payler 02380 612218 [email protected] www.hda.org.ukLocal contact – Annette Scivier [email protected]
Motor Neurone Disease Association, Isle of Wight branch11
Health conditions covered - Motor Neurone Disease
Contact Maureen Martinez 01983 615701 [email protected] www.mndiw..org.uk
Muscular Dystrophy Campaign, Isle of Wight Branch
Health Conditions Covered Becker muscular dystrophy Bethlem myopathy Central core disease Charcot-Marie-Tooth disease (CMT) Congenital muscular dystrophy (CMD) Congenital myasthenia syndromes Congenital myotonic dystrophy Duchenne muscular dystrophy Emery-Dreifuss muscular dystrophy Facioscapulohumeral muscular dystrophy (FSH) Fibre-type disproportion Fibrodysplasia ossificans progressiva (FOP) Inclusion body myositis (IBM) Juvenile dermatomyositis Limb girdle muscular dystrophies (LGMD) Limb girdle muscular dystrophy 1B (LGMD 1B) Limb girdle muscular dystrophy 1C (LGMD 1C) Limb girdle muscular dystrophy 2A (LGMD 2A) Limb girdle muscular dystrophy 2B (LGMD 2B) Limb-girdle muscular dystrophy 2I (LGMD 2I)Manifesting carriers of Duchenne muscular dystrophy McArdle disease Merosin-deficient congenital muscular dystrophy: MDC1A Metabolic disorders Minicore (multicore) myopathy Mitochondrial myopathies Myasthenia gravis Myopathy Myotonias Myotonic dystrophy Myotubular (centronuclear) myopathy Nemaline myopathy Oculopharyngeal muscular dystrophy (OPMD) Periodic paralyses Polymyositis, dermatomyositis and sarcoid myopathy Rigid spine syndrome Sarcoglycanopathies: LGMD2C, LGMD2D, LGMD2E and LGMD2F
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Spinal muscular atrophy (SMA) Ullrich congenital muscular dystrophy
Contact Mr Colin M Baker 01983 242961 [email protected] http://www.muscular-dystrophy.org/ https://www.facebook.com/musculardystrophycampaign
Multiple Sclerosis Society Isle of Wight Group
Health conditions coveredMultiple Sclerosis
Contact Jenny Harrod [email protected] Direct Dial 07976629012 www.facebook.com/MS-Society-Isle-of-Wight-Branch-154416151364531
Myaware Isle of Wight group
Health conditions coveredMyasthenia Gravis(MG)Ocular MyastheniaCongenital MyastheniaLambert Eaton Myasthenia Syndrome (LEMS)
Contact Mrs Lynne Pitcher01983 761265 National Helpline 0800 919922 [email protected] www.myaware.org
Parkinson’s UK, IOW Branch
Health conditions covered - Meetings take place around the Island. Other activities include exercise classes, curling and bowls, an art and social group and hydrotherapy sessions.
Contact Mr Ron Tweedie 01983 719389 [email protected] George Hanson 01983 740951Rosemary Smith (Local Advisor for the National Parkinson’s Society)
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0344 225 3678 [email protected] Parkinson’s Helpline 0808 800 0303
Isle of Wight Association for Spina Bifida & Hydrocephalus
Health conditions covered Spina BifidaHydrocephalus
Contact Freya Conway 07535 004502 [email protected] Axford [email protected] www.iwasbah.comwww.facebook/pages/Isle-of-Wight-Association-for-Spina-Bifida-and-Hydrocephalus/585664281508543
OBSESSIVE COMPULSIVE DISORDER (OCD)
Obsessive Compulsive Disorder (OCD) Support Group
This group has been running for about two years and provides a free, confidential, safe environment for people with OCD to discuss problems, worries, concerns and meet other people with the condition. The group is open to anyone aged 14+ (those under 18 need to attend with a parent/carer) and meets on the 2nd Tuesday of each month between 6.30 and 8.30 at the Age UK Offices in Newport.
ContactBrian Taylor07870 171990 [email protected]
OSTEOPOROSIS
Isle of Wight Osteoporosis Support Group
This group meets to support people with osteoporosis, their families and their carers on the Isle of Wight. Their meetings are held on Friday afternoon at Newport Methodist Church, Quay Street, Newport, There are speakers on osteoporosis related subjects and it’s a friendly sociable group.
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ContactSylvia Whalley 01983 524723Heather Woodfield01983 562642www.nos.org.uk/isleofwight
PITUITARY SUPPORT
Solent Pituitary Support Group
Meets once a year on the Isle of Wight but regularly in Portsmouth
ContactMellissa [email protected] www.pituitary.org.uk
RESPIRATORY DISEASEBreathe Easy Isle of Wight / BLF Active Isle of Wight
Health conditions covered - support for anyone managing and living with a Chronic Lung ConditionWe are a support group for anyone living and managing a Chronic Lung Condition and we meetevery 2nd Friday of the month from 2pm - 4pm in the Respiratory Department, St Mary's Hospital. (January, June and Sept Meetings are normally outings or meals held at other locations).
We are linked to the British Lung Foundation and are supported by the Respiratory Team. We have a BLF Active Network of weekly exercise classes that are held in the Respiratory Gym and various community centres and church halls across the Island. This is partly funded through the CCG, Community Action IW and the My Life a Full Life Program. Classes are led by a qualified Level 4 Chronic Respiratory and GP Referral Exercise specialist.
Contact Andy Savage Andy Savage 01983 810932 Respiratory Dept. 01983 552190 [email protected] British Lung Foundation www.lunguk.org Facebook: Breathe Easy IOW
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Cystic fibrosis Trust – Portsmouth and Isle of Wight branch
Health conditions covered – Cystic fibrosis
Contact Sue Kruk, Secretary Sue Kruk 023 92469104 CFT Helpline 0300 373 1000 [email protected] [email protected] www.f acebook.com/CFPortsmouth
SLEEP DISORDERSSleepwell
Health conditions covered – sleep disorders and CPAP treatment
ContactTracy Jones, Lead PhysiologistMike Douse - Chairman 01983 552114 [email protected] www.sleepwell-iow.org Facebook: a link to join the closed Facebook group is available via the website
SOCIAL GET TOGETHER
Tea and Chat
This is a social group for people who want to get together to meet others. The groups meets at St John’s Church Hall on Mondays 12 until 2pm.
Contact Marilyn 01983 559173
STROKEIsle of Wight Stroke Club
Health conditions covered - Stroke - CVA, TIA. This is a independent Island based charity with a social group that meets regularly on a Monday at Riverside and organises may other activities.
Contact Bob Stringer
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01983 402480 [email protected] www.wightfightingstroke.org https://www.facebook.com/home.php#!/groups/i.o.w.strokeclub/
Stroke Support, Isle of Wight – The Stroke Association
Health conditions covered - Stroke
Information, advice and support for stroke survivors and their close network to manage the impact of stroke
Contact Mary Barton and Maeve Fuller, Information Advice and Support Co-ordinators 01983 898301 National Helpline 0303 3033 100 [email protected] www.stroke.org
Contact Tina Cutting, Communication Support Co-ordinator 01983 612729 [email protected] www.stroke.org
Different Strokes, Isle of Wight
Health conditions covered - Younger survivors of Stroke
Exercise classes for younger stroke survivors held at Laidlaw Hospital, St Mary’s Hospital, and Newport. Classes are a great opportunity to meet and share experiences with other stroke survivors. Classes are designed to accommodate a wide range of abilities and medical conditions. You can join at any time and attend as many sessions as you like. You can bring a carer or partner with you. The group is run by stroke survivor volunteers.
Contact Sue Preater 01983 533236 [email protected]
TINNITUS
Tinnitus Support Group17
The Tinnitus Support Group meets 4 times a year at Riverside, Quay Street, Newport. They are a well-established group but are really very welcoming to new members.
ContactPete Coulson [email protected]
TOURETTES
Isle of Wight Tourette’s Group
On line support and group meetings available.
ContactJennifer Smallman [email protected] Tourette’s Support Group – Facebook page
VISUAL IMPAIRMENTIsle of Wight Society for the Blind
Health conditions covered Visual Impairment – all aspects.Support to families and friends of people with a visual impairment
Contact Estelle Thomas01983 522205 [email protected] www.iwsb.org.uk
The website is currently being re written to take into account new services
WORK OPPORTUNITIES
The Shaw Trust
Work and Choice Programme. Specialist Support for people with disabilities to find and stay in work.
Contact18
