Useful contacts
If you cannot find a contact below or need a more local contact then please visit www.carenorthants.co.uk
An award winning site containing a host of information and resources for people living with MS and professionals alike. You can access all of the information leaflets produced by the MS Society via the website and download or order copies of them; they also have an excellent Links section.
MS Society
MS National Centre
372 Edgware Road
London
NW2 6ND
Telephone: 020 8438 0700
Fax: 020 8438 0701
National Helpline 0808 800 8000 (Mon-Fri 9am - 9pm)
Website:
http://www.mssociety.org.uk
There is now also a new facility by which you can e-mail the helpline - all
E-mails will be responded to within 3 days helpline@mssociety.org.uk
East Midlands region http://www.mssociety.org.uk/regions/east_midlands/index.html
An excellent source of information and resources for people living with MS and for professionals looking for educational courses and opportunities in MS. Their website includes an excellent Links section and also enables access to their list of information leaflets.
Spirella Building
Bridge Road
Letchworth Garden City
Hertfordshire
SG6 4ET
Telephone: 01462 476700
Fax: 01462 476710
Email:
info@mstrust.org.uk
Website: http://www.mstrust.org.uk
A national charity helping disabled adults and children use computers and the internet by adapting and adjusting technology to suit individual needs
Website: www.abilitynet.org.uk
The Asian MS support group is our national support group for people affected by MS from the Asian community.
Our group's aims are:
Call 0208 438 0856 - Monday, Wednesday, Friday 9am-5pm
Send an e-mail to asian@mssociety.org.uk
Write to:
Asian MS c/o
MS Society, MS National Centre
372 Edgware Road,
London NW2 6ND
This is the Trade Association for Pharmaceutical companies in the UK manufacturing prescription medications. They produce a very interesting publication entitled Targeting MS which will be of interest to Health Professionals as well as people living with MS as it contains a wealth of information about current research into new treatments as well as a comprehensive overview of MS and is free to download or order direct from their site.
Website: http://www.abpi.org.uk You can find Targeting MS in the 'Publications: Patients and their carers' section.
A non-profit organisation providing support to professionally qualified practitioners
Association of reflexologists
5 Fore Street, Taunton, Somerset, TA1 1HX
Telephone 01823 336646
Website: http://www.aor.org.uk
Advice regarding Disability Living Allowance and Attendance Allowance.
Website: http://www.direct.gov.uk/disabledpeople/financialsupport
The Bladder and Bowel Foundation (B&BF) is the UK’s largest, non-profit making, advocacy charity providing help, information and support for all types of bladder and bowel related problems, for patients, carers and healthcare professionals.
Bladder & Bowel Foundation
SATRA Innovation Park
Rockingham Road
Kettering, Northants, NN16 9JH
Helpline: 0845 345 0165
General enquiries: 01536 533255
Fax: 01536 533240
Or please send an email to: info@bladderandbowelfoundation.org
Website http://bladderandbowelfoundation.org/
Provides information and services for people with neurological conditions and includes an 'Access Information Toolkit' which helps you find the information you need about your MS.
Website:
http://www.brainandspine.org.uk
Provides advice on a range of services to help meet the needs of anyone seeking information about counselling and psychotherapy.
BACP House
15 St John's Business Park
Lutterworth
Leics LE17 4HB
Website: http://www.bacp.co.uk
BCMA, PO Box 5122, Bournemouth, BH8 0WG
Telephone: 0845 354 5977
Website: http://www.bcma.co.uk
Brings together all those interested in the oral care of people with disabilities.
Website: http://www.bsdh.org.uk
The myelin projects purpose is to find therapies for demyelinating diseases, both acquired (such as MS) and hereditary neurodegenerative disorders (the leukodystrophies). They also provide information and support for people with myelin related conditions.
139 Hulme Hall Road, Cheadle Hulme, Stockport, SK8 6LQ
Website: www.myelinproject.co.uk
A free nationwide postal library of unabridged recorded books for people with sight problems or other disabilities. You do not have to be registered as having a visual impairment to be able to use this facility.
Phone: 01296 432339
Website:
http://www.calibre.org.uk
A new website and forum has been developed for Carers and those working in the care sector providing access to forums, live online chat and private messaging
Website: www.carersconnect.com
Website: http://www.direct.gov.uk/en/CaringForSomeone/index.htm
This is a website which gives details of hoist friendly hotels and B&Bs and contains a wealth of information
Website: www.chuc.org.uk
A self help group that supports people who have to live with chronic pain.
Telephone 01158545242 Janis Powell Monday- Sunday, 10:00am-7:00pm
Telephone 01159878842 Fernando Stravino, Monday- Sunday, 10:00am-7:00pm
Telephone 01159161492 David O'Sullivan Monday- Sunday, 10:00am-7:00pm
Email smiler2@ntlworld.com
The home page for this national organisation which contains large amounts of information and advice and incorporates a search facility to find details of your nearest bureau.
Website: http://www.citizensadvice.org.uk
Website www.adviceguide.org.uk
A website designed to help people who have any problem with their bladder or bowels and the professionals who provide services.
Website: http://www.continence-foundation.org.uk
What is the service?
Specialist Service providing treatment and advice for adults and children (over 3) with bladder and bowel problems. Advice, education and support for health, social, independent care and the voluntary sector.
What does the service do?
Patients can expect an individual assessment of their bladder and or bowel problem by a specialist continence nurse/physiotherapist and treatment tailored to their specific needs.
Type of staff
- Specialist Nurses ( For adults and children)
- Specialist Physiotherapists
- Continence Support Workers
Access to service/referral
You may refer yourself by telephoning the department or referrals can be made in writing by GP’s, consultants and all other health and social care staff.
Why might I need the service?
If you answer yes to any of the following questions you may benefit from our advice.
Do you:
- have existing bladder or bowel problems?
- have to go to the toilet more than seven times during the day?
- have to go to the toilet more than twice a night?
- wet the bed?
- have to rush to the toilet with your bladder or bowel?
- leak urine and or faeces at anytime?
- have problems opening your bowels?
Continence Advisory Service
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Telephone:
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01604 883860
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Fax:
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01604 883869
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An independent charity aimed at improving the lives of carers by giving them time to be themselves and have a break from their caring responsibilities. Our aim is to provide a reliable service, tailored to meet the individual needs of each carer and the person they are caring for. We have schemes in most parts of England and Wales, which provide a range of services to meet local needs.
Telephone: 0845 450 0350
Website:
http://www.crossroads.org.uk
Telephone 01159628920, support service team Monday- Friday 8:30am-5:00pm
Email call@emcrossroads.co.uk
Website www.emcrossroads.co.uk
Promoting mobility for people with a disability
Telephone: 01508 489 449
Website:
http://www.dda.org.uk
Offers a comprehensive range of services to improve quality of life for disabled people including supply and advice about equipment and adaptations.
Telephone: 0870 7601580
Website:
http://www.disabledliving.co.uk
Information about holidays for people with disabilities including wheelchair accessible visitor attractions, activities and accommodation is contained within this site.
Website: http://www.disabledholidayinfo.org.uk
Solecast House, 13-27 Brunswick Place, London, N1 6DX
Website: http://www.euroyellowpages.com/dse/dispengl.html
Generic courses for people who live with long term health conditions
Website: http://www.expertpatients.co.uk
Full of useful information to help epople with disabilities enjoy gardening again.
Website: www.gardeningfordisabledtrust.org.uk
Gay men and Lesbians Affected by MS
GLAMS is a national self-help support group for lesbians, gay men, bisexual and trans (LGBT) people affected by MS.
GLAMS can help you meet other gay people in the same situation, offer support, provides an opportunity to share experiences and tackle any feelings of isolation.
“When I found out I had MS I didn't know who to speak to. GLAMS has helped me meet other people with MS who respected my sexuality and recognised it as an important part of my life.”
GLAMS offers our members:
- A quarterly newsletter including a mix of national news about MS as well as news about the LGBT community.
- Facilitates social events where LGBT people affected by MS can meet.
- Aims to run Information events with MS specialist nurses, neurologists and other health professionals as speakers.
- Runs a website and an active and supportive online discussion board.
“When I was told I had MS I had a lot of questions. Because GLAMS works closely with the MS Society they were able to send me a lot of information and I started to realise that my life wasn't over.”
Call 0208 438 0959 Monday to Friday 10-3pm
Send an email to glams.uk@googlemail.com
Write to GLAMS c/o MS Society, MS National Centre, 372 Edgware Road, London, NW2 6ND
If you think you meet the eligibility criteria you will need to contact the transport booking office at the hospital.
Telephone 01604 545858
A useful resource for anyone looking for support or general advice about hypnotherapy
E-mail: www.hypnotherapy-directory.org.uk
JEMS is a Jewish Care support group for people in their 20’s to 40’s with Multiple Sclerosis and their partners. JEMS has been running since May 2008 and meets monthly in the Edgware area to offer support, to share knowledge and offer friendship to each other on an informal basis.
Guest speakers often come to meetings to provide up to date advice and guidance on Multiple Sclerosis. The average number of people attending each meeting is around 10 – 15. JEMS would welcome other Jewish people with MS in order to reach as many people as possible.
For more information, please contact David Brodtman on Telephone 020 8922 2832 or
msgroup@jcare.org
Supports people of working age to move into paid work. Access to work is specifically to help overcome the problems resulting from working with a disability.
Website: http://www.jobcentreplus.gov.uk
Are you living with multiple sclerosis? Would you like to meet new friends with MS? Welcome to Jooly's Joint.
Website: http://www.mswebpals.org
The motability scheme enables people to use their government funded mobility allowances to obtain a new car, powered wheelchair or scooter and supports adaptations of cars to meet individual needs.
Motability Operations
City Gate House
22 Southwark Bridge Road
London SE1 9HB
Telephone: 0845 456 4566 (8.30-5.50 Mon-Fri)
Website:www.motability.co.uk
This is an independent site funded by the Department of Health containing information about the different disease modifying therapies.It is aimed at people who have been recommended to start treatment with one of the DMTs and need more information to help them decide which of the drugs will be most appropriate for them as an individual and contains a wealth of information about these treatments
Website: www.msdecisions.org.uk
This is a site which contains a great deal of information of use to both people affected by MS and health professionals. There is a quarterly Journal which can be downloaded or ordered free of charge covering topics such as stem cells in MS and spasticity. There is also an opportunity to subscribe to a weekly e-mail with regular updates and news from the world of MS
The MSIF, in conjunction with the World Health Organisation, have produced an Atlas Of MS (Sept 2008) which is full of information about the prevalence of MS around the world and of the resources which are available in different parts of the world. This is free to download from the MSIF sight or a hard copy can be purchased for a nominal sum.
Website: www.msif.org
Bradbury House
155 Barkers Lane
Bedford
MK41 9RX
Telephone 01234 325781
Email:
mscentre2@community.co.uk
Website
www.mscentrebedsandnorthants.com
We are a Tri-Service MS group.
- We formed to provide support, information and advice.
- We are an informal group run by people with experience of MS
- We offer a confidential 'listening ear', especially to people newly diagnosed with MS
Website www.mutualsupport.org.uk
The organisation responsible for providing national guidance on drugs and treatments offered in the NHS.
Website:
http://www.nice.org.uk
To download/view the NICE guidelines pertinent to MS, search under 'Our Guidance' on this website.
The NSF for Long Term Conditions which includes advice about neurological conditions can be viewed/downloaded from the Department of Health website (http://www.dh.gov.uk)
and specifically from the link below:
http://www.dh.gov.uk/en/Policyandguidance/Healthandsocialcaretopics/Longtermconditions/Long-termNeurologicalConditionsNSF/index.htm
Campaigning and support group for blind and partially sighted people and people who have an interest in visual impairment.
Website:
www.nfbuk.org
http://www.nerve-pain.co.uk/default.aspx
The neurological alliance enables charities to work together to improve quality of life for all those living in the UK with a neurological condition. The site includes details of useful organisations, publications and information including access to the leaflet 'Getting the best from neurological services' which is published by the Alliance.
Website www.neural.org.uk
This site provides access to a range of carefully selected journal articles, best practice guidelines and reviews which make a significant contribution to the evidence base for the management and treatment of MS. The library covers a wide range of Neurological conditions, not just MS and includes information about the NSF for Long Term Conditions as well as long term conditions generally.
Website: http://www.library.nhs.uk/neurological
A new website providing medical advice, lists of local services and lots of health related information
Website: http://www.nhs.uk
24 hour help line providing information and advice about health, illness and services.
Telephone: 0845 4647
Website:
http://www.nhsdirect.nhs.uk
Website http://www.nystagmus.co.uk/
Website http://nystagmusnet.org/
This service has been introduced to ensure the NHS listens to patients, their relatives, carers and friends and answers their questions and resolves their concerns as quickly as possible.
Your local hospital will have their own PALS though you can find out more (including contact details for your local PALS) on the website.
Website: www.pals.nhs.uk
Details of patient support organisations, self help groups, health and disease information, providers, benefits and financial advice etc.
Website: http://www.patient.info
Website www.thepensionservice.gov.uk
Contact by phone:
Direct payments 0800107200
Attendance allowance & disability living allowance 08457123456
Carers allowance 01253856123
To arrange an appointment at an information point or home visit, call 01159895868
An 'arts in health' charity supplying poetry cards for waiting patients covering works past and present. The charity also undertake research to explore the value of poetry in the health care environment.
http://www.poetrysociety.org.uk/content/archives/healthcare/inthewr
The only UK society established for primary care professionals with an interest in neurology.
Website: http://www.p-cns.org.uk
This is the largest provider of comprehensive support services for carers in the UK. Through its unique network of 129 independently managed Carers' Centers and interactive websites, the Trust currently provides quality information, advice and support services to 290,000 carers, including just over 15,000 young carers.
Websites:
http://www.carers.org/local/north-west
http://www.youncarers.net
A project funded by Access to work designed to provide you with free, confidential advice and support around employment
Website www.ProAbility .co.uk
Free phone: 0800 612 0477
(Royal Association for Disability and rehabilitation). The UK's largest campaigning network who's mission is to enable individuals, networks and policy-makers to do things differently.
12 City Forum,
250 City Road,
London, EC1V 8AF
Website: www.radar.org.uk
Relationship advice and counselling
Telephone:08451 304010
Website:
http://www.relate.org.uk
Custom made equipment for people with a whole range of disabilities
Remap head Office
D9 Chaucer Business Park
Kemsing, Sevenoaks
Kent TN15 6YU
Telephone 0845 130 0456
Website: www.remap.org.uk
Norfolk House,
1a Tournament Court,
Edgehill Drive,
Warwick CV34 6LG
Website www.riding-for-disabled.org.uk
Is the UK's leading charity offering information, support and advice to almost two million people with sight loss.
Royal National Institute of Blind People
105 Judd Street
London
WC1H 9NE
Call our Helpline on 0303 123 9999.
Telephone 020 7388 1266
Fax: 020 7388 2034
Website http://www.rnib.org.uk
Website http://www.rnid.org.uk/
Telephone 0808 808 0123
Textphone 0808 808 9000
informationline@rnid.org.uk
Our head office is based in London and houses our Media Team, Information Line and Web Team.
19-23 Featherstone Street, London EC1Y 8SL
Telephone: 020 7296 8000
Textphone: 020 7296 8001
Fax: 020 7296 8199.
An independent charitable trust promoting good science and sense for the public. They have recently produced an information guide (which can be downloaded from their site for free) and which aims to help people tell the beneficial from the bogus in 'miracle cure' stories. The guide is called: I’ve got nothing to lose by trying it - and weighs up claims about cures and treatments
Website: www.senseaboutscience.org.uk
Shift.ms is a community for young people affected by Multiple Sclerosis. Users can share, support and interact with each other throughout the site
Website: www.shift.ms
This is a national charity promoting learning, training and employment opportunities for adults and young people with any kind of disability.
Telephone: 0800 3285050
Website:
http://www.skill.org.uk
(TIMS) Therapists in MS is an initiative which brings together allied health professionals who share a special interest in Multiple Sclerosis.
Website: http://www.therapistsinms.org.ukl
The United Kingdom Multiple Sclerosis Specialist Nurse Association (UKMSSNA) is the professional membership organisation for Clinical Nurse Specialists in multiple sclerosis and for other health and social care professionals with an interest in the care of people with MS in the United Kingdom
Website: http://www.ukmssna.org.uk
The aims of the Tissue Bank are to provide a facility for people who want to donate their organs to research and to act as an essential resource for those scientists conducting research on the cause and treatment of multiple sclerosis
Website: www.ukmstissuebank.org.uk
A national charity providing short breaks (respite care) and other services for people with a wide range of disabilities.
Website: www.vitalise.org.uk
Website giving information about local and national volunteering options
Website: http://www.volunteering.org.uk