LONG TERM CONDITION SUPPORT GROUPS ON IW
AMPUTEES
IOW Amputee Group
Health conditions covered - Congenital or acquired limb loss, all persons on the IOW
Contact
Sue Moody
 07786653808
 iowampsug@googlemail.com
 http://iowampgroup.org.uk/
ARTHRITIS - INFLAMMATORY
Isle of Wight Rheumatoid and Inflammatory Arthritis (NRAS) Group
Health conditions covered - Inflammatory Arthritis: Rheumatoid Arthritis, Psoriatic Arthritis,
Ankylosing Spondylitis
Contact
Hayley Bartlett
07708469764
 hayley@iwrias.org.uk
 http://www.iwrias.org.uk/
Isle of Wight Rheumatoid and Inflammatory Arthritis (NRAS) Group have a page and
group set up on Facebook.
ASTHMA
Isle of Wight Asthma Swimgroup
Health conditions covered - asthma
The Isle of Wight Asthma Swimgroup 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.
Contact
Liz Bell
 01983 564356
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CANCER
John Cheverton Information and Support Centre, Earl Mounbatten Hospice
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
 01983 535319
 email: infosupport@iwhospice.org
Living Well On Wight
Cancer changes everything….. A 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
 Helpline 0845 123 2310
 Penny Brohn Cancer Care: 01275 370 100
 Email: info@pennybrohn.org
Bowel cancer – Semi Colon Group, supported by Macmillan Cancer Care
Health conditions covered – Bowel cancer support, including carers
Contact
Mr A C Crowson
 01983 528642
 cjtinson@gmail.commailto:davekielyiow@aol.com
 www.semicoloniow.org
Applegate Breast Care Support Group
Health conditions covered – Breast Cancer
Contact
Mary Seymour
 07814699470 or Breast Care Nurses 534562
 mailto:mary_tutuila@uwclub.net
Head and neck cancer support group
Health conditions covered – All head and neck related cancer patients and their carers, family
and friends
Contact
Mrs June Ring
Mrs Mary Seymour
 01983 524186
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 isleofwight@wessexcancer.org mailto:davekielyiow@aol.com
 www.wessexcancer.org
Lung cancer support group
Health conditions covered – Lung cancer patients, carers, family and friends
Contact
Mrs June Ring
Mrs Mary Seymour
 01983 524186
 isleofwight@wessexcancer.org mailto:davekielyiow@aol.com
 www.wessexcancer.org
Prostate & other Urology Cancer Support Group, IW
Health conditions covered - Urological cancers but predominately prostate cancer
Contact
Dave Kiely
 01983 407662
 davekielyiow@aol.com
 www.isleofwighturologycancersupportgroup.org.uk
Radiotherapy Reunion Group
Health conditions covered – All patients, carers and friends of those who have received
radiotherapy
Contact
Mrs June Ring
Mrs Mary Seymour
 01983 524186
 isleofwight@wessexcancer.org mailto:davekielyiow@aol.com
 www.wessexcancer.org
Upper GI cancer Support Group
Health conditions covered – All those with upper gastrointestinal cancers, carers, friends and
family
Contact
Mrs June Ring
Mrs Mary Seymour
 01983 524186
 isleofwight@wessexcancer.org mailto:davekielyiow@aol.com
 www.wessexcancer.org
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Skin cancer support group
Health conditions covered – All those with skin cancers, their carers, family and friends
Contact
Mrs June Ring
Mrs Mary Seymour
 01983 524186
 isleofwight@wessexcancer.org mailto:davekielyiow@aol.com
 www.wessexcancer.org
CARERS
Carers UK IW & Quay Carers
Health conditions covered - Unpaid Adult Carers of Adults
Contact
Elizabeth Martin/Soo Scott
01983 533173
 carersiw@btconnect.com
 http://carersukiwbranch.wordpress.com
DEMENTIA
Alzheimer Café UK IOW Branch
Health conditions covered - Dementia – all types
Contact
Maggie Bennett
01983 220200
 alzheimercafeiow@btconnect.com
 www.alzheimercafeiow.org.uk
 Facebook – AlzheimerCafeIOW
 Twitter - @AzCafeIOW
DIABETES
Diabetes UK Isle Of Wight Voluntary Group
Health conditions covered - Diabetes
Contact
Richard Newnham
 01983 290168
 ricnewnham@onwight.net
 http://isle-of-wight.diabetesukgroup.org/home/iow---home.asp
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FIBROMYALGIA
Isle of Wight Fibromyalgia Support Group
Health conditions covered
Fibromyalgia
Chronic Fatigue Syndrome
ME
Contact
Karen Smith
 0844 887 2346
 iwfmsg.fibromates@gmail.com
www.isleofwightfibromyalgia.webs.com
Facebook Fibromates-Isle of Wight Fibromyalgia Support Group
HEARING IMPAIRMENT
Action 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).
Dual sensory loss (deafblind).
Contact
Ann Emery, Service Manager
 01983 529533 , Textphone: 01983 529998
 IOW@hearingloss.org.uk
 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 any one with a sensory loss,
befriending and coffee mornings and monthly drop in clinics across the Island for maintenance of
NHS hearing aids.
HEART DISEASE
Isle of Wight Heart Care Club
Health conditions covered - All heart conditions
Contact
Mrs Lyn Smith
 01983 296091
5
 lynsmith250@hotmail.co.uk
 www.islandheartcareclub.org.uk
NEUROLOGICAL CONDITIONS
Epilepsy Society (Isle of Wight)
Health conditions covered - Epilepsy
Contact
Dave Piggott
 01983405825
 davidpiggott@yahoo.co.uk
Headway Isle of Wight
Health conditions covered - Head injury. We support anyone who has suffered a brain injury, the
families and carers.
Contact
Mrs Joy Cleightonhills
 01983 874651
 joy.headwayiow@gmail.com
 Facebook - Headway IOW
Huntington’s Disease Association
Health conditions covered - Huntington’s Disease
Contact
Eve Payler
 02380 612218
 eve.payler@hda.org.uk
 www.hda.org.uk
Motor Neurone Disease Association, Isle of Wight branch
Health conditions covered
Motor Neurone Disease
Contact
Maureen Martinez / Ann Marchant
 01983 615 701 or 07922 12 34 16
 mam_nfm@yahoo.co.uk
 www.mndiw.btck.co.uk
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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 myasthenic 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
Spinal muscular atrophy (SMA)
Ullrich congenital muscular dystrophy
Contact
Mr Colin M Baker
 01983 242961
 feathers455@hotmail.co.uk
 http://www.muscular-dystrophy.org/
 https://www.facebook.com/musculardystrophycampaign
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Myasthenia Gravis Association (MGA) Isle of Wight branch
Health conditions covered
Myasthenia Gravis(MG)
Ocular Myasthenia
Congenital Myasthenia
Lambert Eaton Myasthenia Syndrome (LEMS)
Contact
Mrs Lynne Pitcher
01983 761265
 piglettina@btopenworld.com
 www.mga-charity.org
Parkinson’s UK, IOW Branch
Health conditions covered - Parkinson’s disease
Contact
Mr Ron Tweedie
884913
 tweediern@onwight.net
Isle of Wight Association for Spina Bifida & Hydrocephalus
Health conditions covered
Spina Bifida
Hydrocephalus
Contact
Sylvia Griffiths
 01983 863658
 adrian.axford@gmail.com
 www.iwasbah.com
 https://www.facebook.com/pages/Isle-of-Wight-Association-for-Spina-Bifida-andHydrocephalus/585664281508543
RESPIRATORY DISEASE
Breathe Easy Isle of Wight / BLF Active Isle of Wight
Health conditions covered - support for anyone managing and living with a Chronic Lung Condition
Contact
Andy Savage
 Andy Savage 01983 810932
 Respiratory Dept. 01983 552190
 ajsavage67@yahoo.co.uk
 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 Krug, Secretary
 Sue Krug 023 92469104
 CFT Helpline 0300 373 1000
 enquiries@cysticfibrosis.org.uk
 zlkruk@waitrose.com
 www.facebook.com/CFPortsmouth
STROKE
Isle of Wight Stroke Club
Health conditions covered - Stroke - CVA, TIA
Contact
Carole Greenham
Bob Stringer
 01 983 869 100
 enquiries@wightfightingstroke.org
 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, Information, Advice and Support Co-ordinator
Maeve Fuller, Information, Advice and Support Co-ordinator
 01983 898301
 iow@stroke.org.uk
 www.stroke.org
Communication Support, IW - The Stroke Association
Health conditions covered - Stroke –Support for those whose communication has been
affected by stroke
Contact
Tina Cutting, Communication Support Co-ordinator
 01983 612729
 iow@stroke.org.uk
 www.stroke.org
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VISUAL IMPAIRMENT
Isle 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 Thomas
01983 522205
 enquiries@iwsb.org.uk
 www.iwsb.org.uk
The website is currently being re written to take into account new services
Action 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 slight loss or dual hearing and sight loss on the Isle of Wight on behalf of the Isle of Wight
Council.
Diagnosed Sight loss (usually by a consultant ophthalmologist) Dual sensory loss (deafblind).
Contact
Ann Emery, Service Manager
 01983 529533 , Textphone: 01983 529998
 IOW@hearingloss.org.uk
 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 any one with a sensory loss,
befriending and coffee mornings and monthly drop in clinics across the Island for maintenance of
NHS hearing aids.
6 May 2014
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