National ME Campaigning Organisations

Some national Campaigning organisations (including those campaigning for funding biomedical research).

The ME Association provides information, support and practical advice for people who are affected by ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome), their families and carers. They also fund and support research, and offer education and training. ME Connect: 0844 576 5326, open 10–12am, 2–4 and 7–9pm seven days a week.

Action for ME
Action for ME is the UK’s leading charity dedicated to improving the lives of people with ME. They have been at the forefront of the campaign for more research, better treatments and services since 1987, and they provide information and support to people affected by ME. Welfare Rights line: 0845 122 8648 (Monday to Thursday, various times) and general enquiries: 0845 123 2380, 9am-5pm, Monday to Friday.

The 25% ME Group
Approximately 200,000 people in the UK suffer from ME. Some do recover. However, approximately 25 per cent of sufferers remain long-term ill and severely disabled by it. Many are left isolated, housebound or even bedbound. ME affects people from all walks of life, all age groups and can strike when you are least expecting it. The 25% ME Group exists to support all who have the severe form of ME — including the housebound, bedbound and wheelchair users — and their carers. Telephone: 01292 318611.

Local Branches

Some links to some of the local offices of national charities or organisations.

Richmond CAB

Richmond upon Thames CAB can provide you with free, independent, confidential and impartial advice on the following areas: benefits, consumer matters, debt, education, employment, health, housing, immigration and nationality, the law, relationships, tax and so on. Telephone: 020 8712 7800.

Kingston CAB

KCABS is an independent charity, and a Company limited by Guarantee. They offer advice and information on a wide range of subjects, including welfare benefits, debts, housing, employment, relationships and legal issues. Telephone: 020 3166 0953, 10.00 to 13.00, Monday to Friday.

Age Concern Richmond

Age Concern Richmond upon Thames, a well respected independent charity, forms part of an organisation whose name is renowned throughout the United Kingdom. Telephone: 0845 601 1149. They work across the borough to improve the quality of life for older people and to enhance their status and influence. Their mission statement: ‘To promote the well-being of all older people and to help make later life a fulfilling and enjoyable experience.’

Stay Well Kingston

Stay Well Kingston (Formerly Age Concern) Kingston upon Thames is a leading third-sector provider of services, with a reputation for quality and value. We also work in pioneering ways with children through our award-winning intergenerational projects. Telephone: 020 8942 8256; E-mail .

Support Sites

ME Trust

The ME Trust is the UK’s only charity dedicated to funding and providing individual patient treatment for people with ME/CFS. As well as listening and caring for the needs of the whole person, we offer encouragement and support to families, and immediate community of carers.

Counselling Directory

Launched in 2005, Counselling Directory work closely with counsellors and psychotherapists, and have over 10,000 qualified counsellors listed, to be sure the right person is waiting to hear from you.

By inputting your postcode into their search box, they provide you will all local counselling services available to you.

Please note: The Counselling Directory is not connected to us in any way, and the services offered may well have a cost attached. We are offering you this link to help you in times of need, because we want you to have all the available extra options and choices open to you.

Meetup Website

Meetup is an easy site, aiming to list all the active support groups in the South-East.

ME Support

ME Support is one of the leading websites on Myalgic Encephalomyelitis providing information, advice and support.

Network MESH West London

Network MESH is a thriving ME self-help group covering West London. We were established in the late 1980s and have grown significantly since then. We currently have around 145 members, most of whom live in the West London area.

A Hummingbird’s Guide to ME

The idea behind this website was to try to create a guide to ME which doesn't just mindlessly repeat the same inaccurate myths and propaganda again and again but instead focuses on the available facts.

ME in the North East

ME in the North East is an ME charity covering the Northern Region, from the Scottish Borders to North Yorkshire and including North Cumbria. Covering a population of three million with an estimated 12,000 people with ME (approx 2000 are young people up to 25 years).

CFIDS & Fibromyalgia Self Help

Offering groups and resources for improving your quality of life as a person with Chronic Fatigue Syndrome or Fibromyalgia. Founded in 1998.

ME/CFS Hints

ME/CFS: Helpful Hints for Daily Living contains a collection of practical hints for those suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), including information on services and resources, with contact details to support and assist sufferers, their carers, families, friends, and health care practitioners.

ME Tips

These tips are a product of the ingenuity and experience of countless members of the ME community. For years practical tips have been passed through our community by word of mouth and pen. It is our hope that ‘The ME Tips Collection’ will make this easier.

Severe ME Info

This site is the home for Severe ME/CFS: A Guide to Living by Emily Collingridge, a comprehensive reference book.

Samaritans

This group provides confidential, non-judgemental emotional support, 24 hours a day 7 days per week for people who are experiencing feelings of distress or despair. Telephone: 08457 909090.

Resources for Young People

Action for ME: Children and Young People

Action for ME is the UK’s leading charity dedicated to improving the lives of people with ME. They have been at the forefront of the campaign for more research, better treatments and services since 1987, and they provide information and support to people affected by ME. Welfare Rights line: 0845 122 8648 (Monday to Thursday, various times) and general enquiries: 0845 123 2380, 9am-5pm, Monday to Friday.

ME Teens Facebook Site

This is a closed Facebook group for teenagers from 13 with ME/CFS to come together and share interests and make friends. Please feel free to post music, TV clips, artwork and design, photography, anything creative, humorous and uplifting for others to enjoy.

Tymes Trust

Tymes Trust is the longest established national UK service for children and young people with ME and their families. It is a respected national charity whose entire professional team give their time free of charge. They work constantly with doctors, teachers and other specialists, and played a major role in producing the children’s section of the Department of Health Report on CFS/ME (2002). Telephone: 0845 003 9002 Advice Line hours: 11am–1pm and 5pm–7pm weekdays. Outside these hours you may leave a message and they will call you back.

Off The Record Twickenham

If you are a young person aged 11 to 24 who lives, studies or works in Richmond borough, then you can use these confidential services. Everything is free, however we may ask for a donation for counselling if you are over 18 and in work.

ME/CFS VIDEOS

You may find these short videos useful, interesting or just entertaining.

NHS Choices

Dr Charles Shepherd describes the symptoms, diagnosis, and treatments for Chronic Fatigue Syndrome.

Sleepy Dust

ME/CFS video for the friends and family of sufferers.

Carer Tips

A series of YouTube videos, giving excellent tips to carers on how best to provide care, from an ME sufferers perspective, to those living with ME/CFS.

NHS, Health and other useful sites

PillTime

A free NHS pharmacy service with a mission to make medication times easier.

By using pre filled (easy to tear) pouches, you'll never have to worry about missing doses, or struggle to open packets/bottles/blisters again.

They also supply you with all your prescribed creams and ointments as well, so all your GP medications are taken care of.

Sutton Hospital CFS Service

The Chronic Fatigue Service at St Helier and Sutton hospitals is the local multi-disciplinary team and clinical network coordinating centre for people with chronic fatigue syndrome in South-West London and Surrey. Telephone: 020 8296 2000.

European Society for ME (ESME)

Their mission is to create a Think Tank where top scientists from relevant fields can discuss current ME knowledge in order to determine the most crucial direction of future research, and to provide a reliable source of cutting-edge ME information that ESME will incorporate in the education of medical professionals.

Disability Rights UK

Disability Rights UK (formerly Disability Alliance) is a national registered charity which works to relieve the poverty and improve the living standards of disabled people. It provides information on social security benefits, tax credits and social care to disabled people, their families, carers and professional advisers through their member groups. As we have a Group membership of this charity, we will forward requests for advice. It also has a FREE Disabled Students Helpline 08003285050 open Tues 11.30 -13.30 and Thursday 13.30 - 15.30 or you can use their email advice service .

BBC’s Ouch Website

Light-hearted look at disability.

Richmond AID

Richmond AID is a charity of and for disabled people in the London Borough of Richmond upon Thames. It runs a number of projects such as an advice service, gardening project, access work and outreach work. It also has a team of specialist Benefits Advisors who provide benefits checks, help with form-filling and support on making claims and appeals. Benefits Advice Line: 020 8831 6070; Richmond SPADE (Gardening service): 020 8831 6415; Disability Action and Advice Centre (DAAC) Reception: 020 8831 6080, Mobile/SMS: 0789 4215835. The Richmond AID Disability Information Handbook 2012-13 of organisations and services available for disabled people, greatly assisted us in supplying this Richmond information. Handbook can be downloaded for free from Richmond AID's website in a Word document clicking in Publications or using this address: .

Richmond Users Independent Living Scheme

RUILS is a charity and not-for-profit company limited by guarantee. It is an independent, grassroots, self-help organisation that is user run and led by its peers — the people who use its services. RUILS acts as the champion, representative and peer supporter of all disabled and older people who have social care needs. It serves those who are in receipt of a Personal Budget or use Direct Payments, Personal Assistants or other means of support to achieve greater independence and well-being. For Information about the services and events available, please call 020 8831 6093/4.

Richmond Council Adult Access Team

The Adult Access Team is the first point of contact for all referrals and general enquiries. They’ll discuss your situation over the phone to find out more about the kind of help and support you need. They may follow this up with a visit to your home to discuss what help is available. Contact Adult Social Services: Address: Adult Social Services, Civic Centre, 44 York Street, Twickenham TW1 3BZ; Phone: 020 8891 7971; Minicom: 18001 020 8891 7971; E-Mail: adultsocialservices@richmond.gov.uk. The Access team is open Monday to Thursday from 9.00am to 5.15pm, and on Friday from 9.00am to 5.00pm. Emergencies outside office hours: the Adults Emergency Duty Team is available Monday to Friday from 5.00pm to 8.00am, and 24 hours at weekends and on Bank Holidays. Richmond Council Emergency Out of Hours Team: Phone: 020 8744 2442; Minicom: 18001 020 8744 9414.

Kingston Centre For Independent Living

KCIL is an independent, user-led organisation that has been working for 40 years to empower and support disabled people in the borough of Kingston-upon-Thames. We campaign for full equality of status, opportunity and inclusion for all disabled people and provide independent living/disability related services. Our services are targeted at all disabled people regardless of age/impairment, but are also available to non-disabled people or organisations. Telephone: 020 8546 9603.

Kingston Adult Social Care

Please make contact if you need support or advice for yourself, or if you are concerned about the welfare of another person. Telephone: 020 8547 5005; Text: 07797 806 521, 07903738043; Minicom: 0845 600 7752; Type Talk: 18001 020 8744 9414. Office hours: Monday to Thursday: 8.45am–5pm; Fridays: 8.45am–4.45pm. Adults Emergency: Duty Team Telephone: 020 8770 5000, Fax: 020 8770 5318. Minicom: 020 8770 5178; Text Relay: 0800 7311888 (8am–6pm).

NHS111

NHS 111 is a new service that’s being introduced to make it easier for you to access local NHS healthcare services in England. You can call 111 when you need medical help quickly but it’s not a 999 emergency. Telephone: 111, open 24 hours.

NHS Walk-in Centre

Seven days a week, every day of the year. Monday–Friday: 8am–10pm; Saturday, Sunday and Bank Holidays: 8am–9pm. At Teddington Memorial Hospital, Hampton Road, TW11 OJL, Telephone: 020 8714 4004.

NHS Health Costs

Providing Information on the following Health Costs: Free Prescriptions, free dental treatment and dentures, free sight tests and vouchers for glasses, free NHS wigs and fabric support, refund of fares to and from hospital, free healthy start vouchers for milk, fruit and vitamins (if pregnant or has a child under five). Telephone: 0845 337 3063.

Occupational Therapy — Kingston

For rehabilitation and support after a spell in hospital; telephone 020 8934 2518 (Monday–Friday 8.00am to 4.00pm).

Kingston Patient Advice and Liaison Services

Kingston PALS offer a wide range of information about NHS services. Kingston Hospital: Telephone: 020 8934 3993; e-mail: .

Chelwest Patient Advice and Liaison Services

West Middlesex (Chelsea & Westminster) PALS offer a wide range of information about NHS services. West Middlesex Hospital: Telephone: 020 3315 6727

How to Make a Complaint to NHS England

NHS England welcomes concerns, compliments and complaints as valuable feedback that can help us learn from experiences and make improvements to services we commission.

NHS Complaints Advocate

You can contact the NHS Complaints Advocate at the following address: United House, North Road, London N7 9DP; telephone: 0300 330 5454; e-mail: david.postolowsky@voiceability.org.

General Medical Council

If you wish to make a complaint against your GP, you can contact the General Medical Council. This link provides information on the sort of complaint the GMC can investigate.

The Patients Association

If you have a complaint against your GP, you can contact the Patients Association.

Careline: Richmond and Kingston

The Community Alarm Service: Careline is a Council alarm service linked to a control centre providing a 24-hour response service for disabled or elderly people. Richmond and Kingston Contact: Careline Control Centre: Telephone: 0845 600 7413.

Healthwatch Kingston

A network of local individuals and organisations dealing with local health needs in Kingston that is calling for residents to receive the care and support which best serves their health needs. Healthwatch Kingston, Siddeley House, Suite 30, Crown Business Centre, 17 Union Street, Kingston-upon-Thames KT1 1RP. Telephone: 020 8974 6629; e-mail: info@healthwatchkingstonuponthames.org.uk.

Healthwatch Richmond

Healthwatch Richmond is the new independent voice for people in the London Borough of Richmond upon Thames. It helps to shape, challenge and improve local health and social care services. Telephone: 020 3178 8784; E-mail: info@healthwatchrichmond.co.uk.

Legal Services

Richmond Legal Advice Service

Provides initial legal advice on problems, provided free of charge by legally qualified volunteers. First Floor, 1 Princes Street, Richmond-upon-Thames TW9 1ED. Telephone: 020 8891 2105.

Disability Law Service

Disabled people and their families, carers and advocates are all welcome to get in touch with our helpline for advice. Telephone: 020 7791 9800 (Monday–Friday 10am–1pm and 2–5pm). Text phone: 1800 1020 7791 9800.

Local Home Repairs

Repairs To Your Home — Richmond

Financial help may be available to help your basic needs in the home.

Richmond Handyperson Scheme

For small repairs, Age Concern’s Richmond Handyperson Service supports residents of over 60 years of age or who have a disability. It assists with any practical job that helps an older or disabled person, such as repairing a curtain rail, fitting new or replacement locks, changing a light bulb if you are not confident on a pair of steps, and changing tap washers. It can also fit a key safe (available to buy from Handyperson), and offers a garden tidy-up service, and a safety and security check. There is a charge for this service of £30 for up to two hours’ work, plus a call-out charge of £5. All materials are charged at cost price except for materials that have been donated to us, which are supplied free of charge. Telephone: 020 8876 0620.

Kingston Handyperson Scheme

This service in Kingston is for all over 55s, for small repair jobs. The cost is £20 for two hours, plus the cost of any materials. Clients will be expected to pay on the day. Our handyman can fit a grab rail, fit a curtain rail, fit a key safe, assemble flat pack furniture, fit a spy hole, window or door chain, turn a mattress, carry out security checks, change a light bulb, fix a shelf to a wall, re-seal a bath or sink, hang a picture/mirror, and make safe loose carpeting. There is also a home safety check and a referral service for a fire safety check. For more information and to book an appointment, please contact the Handyperson Coordinator, Heather Bruneau. Telephone: 020 8408 8177.

Mobility

Kingston Shopmobility

A centre which will let you have a wheelchair to go round the shops. Electric wheelchairs, electric scooters and manual wheelchairs are all available. Kingston Shopmobility, Level 2, Eden Car Park, Union Street, Kingston-upon-Thames. Telephone: 020 8547 1255.

Hounslow Shopmobility

A centre which will let you have a wheelchair to go round the shops. Electric wheelchairs, electric scooters and manual wheelchairs are all available. Hounslow Shopmobility: Blenheim Centre, Prince Regent Road, Hounslow. Telephone: 020 8570 3343.

Blue Badges — Kingston

If you have permanent and severe walking difficulties, the Blue Badge Scheme allows you to park close to places you wish to visit in the UK and in Europe. The charge for a badge has increased to £10.00 (payable by cheque or postal order only), which is valid for three years. If you think you may be entitled to a Blue Badge, you can call Community Care Services in Kingston 020 8547 6008.

Blue Badges — Richmond

Motability

Motability is a registered charity which offers different schemes to help you obtain a vehicle. If you get the higher rate mobility component of Disability Living Allowance this scheme can help you buy or lease a car, wheelchair or electric scooter. For more details contact: Motability Car Scheme, Motability Operations, City Gate House, 22 Southwark Bridge Road, London SE1 9HB; Telephone: 0845 456 4566; Text phone: 0845 675 0009.

Hiring Wheelchairs

Richmond AID has two manual wheelchairs that are available for short-term hire (generally one to two weeks). Telephone 020 8831 6070, Monday–Friday, 11am–4pm, to book. There is no charge for this service but there is a suggested donation of £5 minimum.

Wheelchair Access to Places

Here you can find detailed information about the access to all kinds of places - hotels, restaurants, colleges, tourist attractions, libraries, hospitals, leisure centres and others in the UK using disabledgo.com.

Transport for London Step Free Map

TFL have produced a map of the London Underground indicating the ‘step free’ stations. Click here to download the Step Free map in PDF to keep for yourself.

Links