OTHER SOURCES OF HELP

Neighbouring London ME Groups

WEST: Network MESH: (Hammersmith and Fulham, Ealing, Hounslow, Hillingdon and neighbouring areas) 0208 400 1904 weekdays only, 0208 994 0989 weekends (Tony Golding) tony@bedfordpark.demon.co.uk http://www.nlmenetwork.org.uk//
EAST: East London: (Waltham Forest, Newham, Hackney, Tower Hamlets, Redbridge and neighbouring areas) 0208 530 4340(Margaret Scragg), 0208 989 9317 (Ian Purser) http://www.nlmenetwork.org.uk//
SOUTH: Camberwell ME Support Group: (Southwark, Lambeth, Lewisham and neighbouring areas) 0208 670 7787after 10.30am (Linda Carvill) http://www.nlmenetwork.org.uk//

(There are other London groups based in Richmond and Barnes, Sutton, Bexleyheath, London SW, Romford and Croydon; for further information on these contact Action for M.E.

National ME Organisations

Action for ME
PO Box 2778
Bristol
BS1 9DJ

Tel 0845 123 2380 or 0117 927 9551 (9.00 – 5pm Mon – Fri)
admin@afme.org.uk (general enquiries)                     services@afme.org (residential courses)
interaction@afme.org (enquiries relating to “Interaction” magazine)
Welfare rights helpline (benefits): 01749 330136 (9am –1pm Mon, Tues, and 9am – 12.30 Wed) Pauline@afme.org.uk
Telephone support 0845 123 2314 (6.30-8.30pm Mon, 11am – 1pm Tue –Fri)

http://www.a4me.org.uk/ AfME’s website for young people and children.

M.E Association
4 Top Angel,
Buckingham Industrial Park,
Buckingham. MK18 1TH

MeConnect: information and support for members and non-members on issues such as illness management, benefits; also enquiries about joining.
Non-members 0870 444 1836, members 0870 444 1835 (both phone-lines open 10am-12 noon, 2pm-4pm, 7pm-9pm)

meconnect@meassociation.org.uk
www.meassociation.org.uk

The 25% Group (for the housebound/bedbound)
21 Church Street,
Troon,
Ayrshire. KA10 6HT

Tel 01292 318611
http://www.nlmenetwork.org.uk//
www.25megroup.org

Association of Young People with ME (AYME) (for under 25s)
9a Vermont Place,
Tongwell,
Milton Keynes,
MK15 8JA
Tel: 08451 232389 (Mon-Fri 10 am - 2 pm),
info@ayme.org.uk ,
www.ayme.org.uk/ 
 

The Young ME Sufferer’s Trust (Tymes Trust)
PO Box 4347,
Stock,
Ingatestone. CM4 9TE

Tel 0845 003 9002 (advice line 11-1pm and 5-7pm weekdays, otherwise answer phone)
www.tymestrust.org

Carer’s Organisations

Carers UK
20-25 Glasshouse Yard,
London. EC1A 4JT

Tel: 020 7490 8818
Carers line: 0808 808 7777 (10 – 12am and 2 – 4pm Wed and Thur)
info@carersuk.org
http://www.nlmenetwork.org.uk//
Information and support on any issue for people caring for friends or relatives.

Crossroads Association
10 Regent Place,
Rugby,
Warwickshire. CV21 2PN

Tel: 0845 450 0350
communications@crossroads.org.uk
http://www.crossroads.org.uk/

Caring for carers. Trained carer support workers able to go into the home for short periods to take over caring tasks and give carers a break.

Benefits

General government info on benefits / financial support
www.direct.gov.uk/en/DisabledPeople/FinancialSupport/index.htm

Benefit Enquiry Line for people with disabilities, long-term illness etc
9th Floor, Victoria House,
Ormskirk Road,
Preston,
Lancashire. PR1 2QP

Tel: 0800 882 200 (8.30am – 6.30pm Mon – Fri; 9am – 1pm Sat)
Bel-Customer-Services@dwp.gsi.gov.uk
Confidential advice/information. Leaflets/claims packs sent. Can complete certain claims.

Benefits and Work
http://www.benefitsandwork.co.uk/

For people with long-term health conditions, carers and support workers. News and forums about all aspects of claiming benefits, including news about proposed benefits changes and downloadable letters you can use in various situations.
NB the North London ME Network is now a member of this organisation, allowing members free access to their fully updated, exceptionally helpful guides to all aspects of claiming benefits and options for undertaking work. Please refer to our library list for details of the guides and how to obtain them.

Transport

General government info on transport
www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/index.htm

Local Government Social Services Departments
Call your local council and ask for your social services physical disabilities team. They can give details of various concessionary travel schemes for disabled people, notably the Taxicard Scheme (subsidised travel in black cabs), the Freedom Pass (free travel on all London transport) and the Blue Badge Scheme (parking concessions for disabled drivers). For full details of these see section 3 (Social Services) insert of your members’ pack, p11-12.

Transport for London
Tel: 020 7222 1234 (24hr travel and accessible transport information)
http://www.tfl.gov.uk/

TfL is the body responsible for London’s transport system, including tubes, buses, taxis, trains and the Dial-a-Ride scheme (low-cost, door-to-door, mostly short-distance transport for people with disabilities). Accessibility information for people with mobility problems. Website includes a journey planner which highlights any potential problems on a route you are considering. If they register with TfL, and pay a one-off charge of £10, blue badge holders are exempt from the London Congestion Charge.

Community Transport
Low-cost transport via these non profit-making schemes. Not every borough has one, and services offered vary, but some (see below) run door-to-door services for individuals e.g. car schemes, shopper services etc.

Brent 020 8838 1353
Hackney 020 7275 2400
Islington 020 7275 2400
Newham 020 7473 4635
Waltham Forest 020 8521 0665

Shopmobility
Tel: 08456 442 446
Email: Info@shopmobilityuk.org
http://www.nlmenetwork.org.uk//

A scheme which lends manual wheelchairs, powered wheelchairs or powered scooters to people with limited mobility to shop, visit leisure facilities etc.

Wood Green 0208 881 5402
Camden 020 7482 5503
Brent Cross 020 8457 4070

Motability
Car schemes: tel: 0845 456 4566 (8.30am-5.30pm Mon–Fri)
Wheelchair/scooter schemes: tel: 0845 607 6260 (8.45am -5.15pm Mon-Fri)
http://www.nlmenetwork.org.uk//

If you receive the higher rate of the Disability Living Allowance mobility component you can apply to Motability for help to hire a new car, or buy a car (new or used) or wheelchair on hire purchase at preferential rates. Own 3yr lease scheme and hire purchase scheme.

Car Tax Exemption
If you receive the higher rate of the Disability Living Allowance mobility component you can claim exemption from road tax for your car. First contact the Disability and Carer Benefits Directorate and ask for exemption certificate DLA404. Once you have this, pick up a form from a main post office.

Disability and Carer Benefits Directorate,
Warbreck House, Warbreck Hill,
Blackpool. FY2 0YE
Tel: 0845 7123456

London Blue Badge Parking Guide
http://www.nlmenetwork.org.uk//

Where you can park, what concessions different boroughs give, parking time restrictions, maps showing blue badge bays. Printed guide (96pages) from Smiths or other bookshops, or order directly from the publisher PIE, tel: 0870 444 5435 http://www.thepieguide.com/ Online version at above web address.

Disabled Person’s Railcard
http://www.nlmenetwork.org.uk//

If you receive Disability Living Allowance (at the higher rate for mobility or higher or middle rate for personal care) this scheme gives a third off normal rail fares. A one year card costs £18, a three year card £48

Websites

Friendship:
http://www.meconnection.co.uk/ site for friendships and contact for people with ME, their friends, family and carers.

http://www.brainfog.org/ fun site with lively chatroom and forums

http://www.mesingles.org.uk/ free notice board service to help put single people with ME in touch with one another.

Tips / Information etc:
http://www.metips.co.uk/ practical tips on coping with everyday life, particularly with severe ME.

http://www.mechat.co.uk/ email support group for ME sufferers and their families. Energy-saving tips and recipes, poetry and artwork, advice, experiences and treatment options.

http://www.chemicalfree.co.uk/ aims to make life more liveable for those affected by Multiple Chemical Sensitivity and Multiple Food Intolerance

Medical / Research:
http://www.discern.org.uk/ gives help assessing the quality of information on health-related sites.

http://www.meresearch.org.uk/ the website of ME Research UK (used to be called MERGE), a charity which funds scientific investigations into the causes, consequences, and treatment of ME/CFS. Site includes database of 2600 research publications.

http://www.remedyfind.com/ an independent site where you can rate (and check other people’s ratings of) different treatments for specific health problems.

http://www.co-cure.org/ information on research and medical theories on topics relating to ME. Includes a ME/CFS/Fibromyalgia “Good Doctors” list. Basic information in Spanish also.

Other:
http://www.me-cfssocialservicesusersgroup.org.uk/ issues and advice relating to community care.

Other

“Energy Efficiency” Grants: to people in receipt of DLA, housing benefit, council tax benefit and some other benefits (though not invalidity benefit) for draft-proofing, insulation and heating repairs or installation.
0800 316 2805
enquiry@eaga.com
http://www.warmfront.co.uk/

Disabled living foundation: charity providing advice on equipment and assistive technology for independent living.

Helpline: 0845 130 9177 (Mon-Fri 10am-4pm),
advice@dlf.org.uk.
www.dlf.org.uk

Dial UK (Disability information and advice line): provides information and advice on all aspects on living with a disability, including community care mobility and transport, equipment etc.
Tel: 01302 310 123
www.dialuk.org.uk