LONG TERM CONDITION SUPPORT GROUPS ON IW
AMPUTEES
IOW Amputee Group
Health conditions covered - Congenital or acquired limbloss, all persons on the IOW
Contact
Sue Moody
07786653808
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
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
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:
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:
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
ailto:
Applegate Breast Care Support Group
Health conditions covered – Breast Cancer
Contact
Mary Seymour
07814699470 or Breast Care Nurses 534562
mailto:
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
ailto:
Lung cancer support group
Health conditions covered – Lung cancer patients, carers, family and friends
Contact
Mrs June Ring
Mrs Mary Seymour
01983 524186
ailto:
Prostate & other Urology Cancer Support Group, IW
Health conditions covered - Urological cancers but predominately prostate cancer
Contact
Dave Kiely
01983 407662
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
ailto:
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
ailto:
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
ailto:
CARERS
Carers UK IW & Quay Carers
Health conditions covered - Unpaid Adult Carers of Adults
Contact
Elizabeth Martin/Soo Scott
01983 533173
DEMENTIA
Alzheimer Café UK IOW Branch
Health conditions covered - Dementia – all types
Contact
Maggie Bennett
01983 220200
Facebook – AlzheimerCafeIOW
Twitter - @AzCafeIOW
DIABETES
Diabetes UK Isle Of Wight Voluntary Group
Health conditions covered - Diabetes
Contact
Richard Newnham
01983 290168
FIBROMYALGIA
Isle of Wight Fibromyalgia Support Group
Health conditions covered
Fibromyalgia
Chronic Fatigue Syndrome
ME
Contact
Karen Smith
0844 887 2346
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
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
NEUROLOGICAL CONDITIONS
Epilepsy Society (Isle of Wight)
Health conditions covered - Epilepsy
Contact
Dave Piggott
01983405825
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
Facebook - Headway IOW
Huntington’s Disease Association
Health conditions covered - Huntington’s Disease
Contact
Eve Payler
02380 612218
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
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
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
Parkinson’s UK, IOW Branch
Health conditions covered - Parkinson’s disease
Contact
Mr Ron Tweedie
884913
Isle of Wight Association for Spina Bifida & Hydrocephalus
Health conditions covered
Spina Bifida
Hydrocephalus
Contact
Sylvia Griffiths
01983 863658
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
British Lung Foundation
Facebook: Breathe Easy IOW
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
STROKE
Isle of Wight Stroke Club
Health conditions covered - Stroke - CVA, TIA
Contact
Carole Greenham
Bob Stringer
01 983 869 100
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
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
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
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
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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