Advice for People Living with M.E.
In addition to its physical and emotional effects, you may find that M.E. has an impact on your income and expenses. There are a number of services throughout the United Kingdom that can offer specialist advice on how to ease your financial worries. If you live outside the UK, please contact your national M.E. Organisations for guidance.
This resource consists of links and information about Finance and Welfare, along with other useful Services. I have also provided some tips on Dealing With the DWP and other parts of officialdom. I have extensive personal experience in these areas, therefore please do not hesitate to Contact Me privately.
The accuracy of any information given is not guaranteed; you should always make your own full enquiries before acting on such information. Where links are made to other websites or mention is made of other organisations, these are provided for information purposes only.
Under the Governments ECO Scheme in 2016, qualifying home owners and private tenants could have their old in-efficient boilers replaced completely free of charge, or heavily subsidised.
Certainty is the National Will Register and Will search service. The website has useful information about Last Will and Testament, Advance Directive and Lasting Power of Attorney. You can also search for regulated solicitors across England, Scotland and Wales.
- Citizens Advice
The Citizens Advice service helps people resolve their legal, money and other problems by providing free, independent and confidential advice.
- Consumer Council for Water
The Consumer Council for Water (CCWater) is a non-departmental public body that represents water and sewerage consumers in England and Wales. Its website has useful tips to cut your water bill and a water meter calculator.
- Family Fund
"We are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. We help ease the additional pressures families face. We can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together."
- Help to Buy
"The government has created the Help to Buy scheme to help hard-working people like you take steps to buy your own home. The new Help to Buy: ISA pays first-time buyers a government bonus. For example, save £200 a month and we’ll add £50, up to a maximum of £3,000, boosting your ISA savings of £12,000 to £15,000."
- Latest Deals
"Find the most extreme deals, discounts, voucher codes, freebies, coupons, competitions, bargains and money saving tips."
- Law Centres Network
Law Centres defend the legal rights of people who cannot afford a lawyer. Law Centres are located across the country and specialise in social welfare law.
- Money Advice Service
The Money Advice Service is an independent service providing free, unbiased money advice across the UK.
- Money Saving Expert
British consumer finance information and discussion website founded by financial journalist Martin Lewis.
The Motability Scheme enables disabled people to use their government-funded mobility allowance to lease a new car, scooter or powered wheelchair.
- National Free Wills Network
"A national network of local law firms offering Will writing services to supporters of UK charities."
- Network Foodbank
Network Foodbank, run by The Trussell Trust, provides a minimum of three days emergency food and support to people experiencing crisis in the UK.
Ofcom (Office of Communications) provides consumers with help and advice with your phone, broadband, TV, radio and postal services. A good way to find out what deals are available is to check out the price comparison sites which have been accredited by Ofcom.
- Pensions Advisory Service
Voluntary organisation that provides information about pensions.
The website lists many well-known companies, and their equivalent geographical numbers.
"Shelter offers free, expert housing advice to anyone – no matter what their situation. Our free helpline is open 365 days a year and we have face-to-face advice centres up and down the country, as well as specialist legal and support services for those who need more in-depth housing help. Our expert advisers will listen to and support clients, and can help them take action or negotiate on their behalf."
Turn2us is a free service that helps people in financial need to access welfare benefits, charitable grants and other financial help. They have some useful tools on their website, including a Benefits Calculator and Grants Search Engine.
- UK Power
UK Power is an Ofgem accredited energy comparison site.
- Age UK
Age UK provides advice and information to older people, which includes claiming benefits and entitlements.
- Benefits and Work
Benefits and Workis a publishing company specialising in information, news articles and detailed guides on sickness and disability benefits.
Two web-apps, one for Employment and Support Allowance and one for Personal Independence Payment, that offer guidance, advice and support on most aspects of the application process. You can even try the sort of questions you may be asked by an assessor.
- Carers UK
Carers UK provides advice and support for carers and the people they care for. This includes information about Carer's Allowance, the main benefit for carers. They also provide an excellent Carers UK Adviceline.
- CFS/ME Guidelines for the Disability Analyst (PDF file)
These guidelines form part of Atos Healthcare’s programme for continuing medical education for Health Care Professionals (HCPs).
- Disability Rights UK
Disability Rights UK is regarded as a leading authority on social benefits and services for disabled people. It publishes an annual Disability Rights Handbook which provides in-depth, comprehensive guidance on the benefits system and information on other services and resources.
"We are one of the leading providers of online benefit calculators in the UK today. We help people determine what they can claim from national and local government via our self-serve calculators."
Non-profit group offering welfare benefit advice/appeals and disability benefit applications completed.
All the Government departments and other agencies and public bodies have merged into this one website. It replaces the Department for Work and Pensions website and Directgov. It has information about all Government services including benefits and tax credits.
- M.E. Organisations
M.E. Organisations offer a wide range of information and services to both patients and carers. The ME Association provides downloadable Benefits & social care leaflets priced at £3.00 each. Shropshire ME Group has free step-by-step guides to completing Benefits. Action for M.E. has a useful Welfare Advice and Support Service telephone line.
- Support with Confidence
Support With Confidence is a Local Authority scheme which provides a list of approved care and/or support services that have been vetted on the grounds of quality, safety and training.
- The Centre for Welfare Reform
"We are working on a variety of projects to develop social innovations, redesign the welfare state and promote social justice."
"Astriid bridges the gap between businesses and skilled professionals who have long-term health issues."
- British Red Cross
The British Red Cross provides a wide range of services, including health and social care. I highly recommend their transport support, along with short-term loans of wheelchairs and other equipment. Their volunteers can provide extra support and care at home, such as preparing meals, shopping and light housework.
- Canine Partners
"Canine Partners train assistance dogs for people with physical disabilities. We are part of Assistance Dogs (UK), the umbrella organisation for all those charities in the UK which have been accredited to train dogs to help people with various disabilities."
- Care Quality Commission
"We monitor, inspect and regulate health and social care services. We publish what we find, including ratings to help people choose care."
- Compassion in Dying
"Helping you prepare for the end of life. How to talk about it, plan for it, and record your wishes."
- Covid-19 Mutual Aid UK
"Covid Mutual Aid UK is a group of volunteers supporting local community groups organising mutual aid throughout the Covid-19 outbreak in the UK. We focus on providing resources and connecting people to their nearest local groups, willing volunteers and those in need."
- Deliver My Newspaper
"Get your favourite newspaper conveniently delivered to your door by your local newsagent FREE for the first six weeks."
- DIAL UK
DIAL (Disability Information and Advice Line), supported by Scope, is an independent network of local disability information and advice services.
- Disabled Living Foundation
The Disabled Living Foundation (DLF) is a national charity which provides impartial advice and information about equipment/assistive technology designed to enable older and disabled people to live more independently.
- Disabled Travel Advice
"Whether you're off on holiday, on a day trip, or looking for an everyday means of travel or transport, you'll find lots of advice here on how you can get about easily as a disabled user."
- Do-it Trust
"With over a million opportunities to volunteer in a UK-wide database, Do-it is the easy way to do something good in your community."
A UK charity providing expert advice, practical support and campaigns for single parents.
"Healthwatch is a new independent consumer champion that gathers and represents the views of the public about health and social care services in England."
"Home-Start helps families with young children deal with whatever life throws at them. We support parents as they learn to cope, improve their confidence and build better lives for their children. The benefits of our support include improved health and well being and better family relationships."
- ICE Card
In Case of Emergency (ICE) cards hold key emergency contact and medical information.
iWantGreatCare.org is a service which allows NHS and private health care patients to rate individual GPs and hospital doctors on the care they provide.
- Lions Message in a Bottle
Lions Message in a Bottle is a simple, but effective, way to keep essential personal and medical details where they can be found in an emergency – the fridge.
- Mail Preference Service / Telephone Preference Service
Free service allowing UK consumers to opt out of receiving unsolicited mail and/or telemarketing calls.
- Merlin's Magic Wand
Merlin’s Magic Wand is a worldwide charity for children, providing magical days out for those who are seriously ill, disabled or disadvantaged.
- Millbrook Healthcare
"Millbrook Healthcare is a leading provider of community equipment, wheelchairs, assistive technology and home improvement agency services in the UK."
- National Federation of Shopmobility
Shopmobility is a scheme which lends manual wheelchairs, powered wheelchairs and powered scooters to members of the public who have limited mobility. Shopmobility is available in most towns, although the website provides a useful search facility. They are often located at local tourist attractions as well as at major events throughout the UK.
- NHS Choices
NHS Choices is a comprehensive information service that helps to put you in control of your healthcare.
- No Isolation
Helping children with illnesses stay connected with their peers.
Available 24 hours a day to provide confidential emotional support for people who are experiencing feelings of distress, despair or suicidal thoughts.
"Scope is a charity that exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we’ll be here."
- Self Management UK
Self management support for people living with long-term conditions.
Streetlife makes it easy to connect with local people, ask questions about your area, share news, events and recommendations with neighbours.
You may find the following of help when dealing with the Department for Work and Pensions (DWP), and other parts of officialdom:
- This seems logical although it is easy to forget, but do make a note of whom you are talking to on the phone. I would advise that you make the note in your diary on the relevant day, along with an outline of what was said. If you decide to record the call, please make it clear that you are doing so, and ensure their agreement is recorded.
- From experience I can recommend doing things by letter rather than phone. You must however keep a personal signed and dated photocopy of your correspondence, this includes a copy of the letter and any documents. You should also keep a photocopy of your claim forms and retain everything you receive from the DWP. Please make a point of sending paperwork by recorded delivery or at the very least obtain Royal Mail Certificate of Posting (the latter is free of charge).
- I recommend attending appointments with a friend, relative or carer; there should be no objection if you explain your situation. Before your appointment take time to write down your questions exactly as you wish to ask them. Do not forget to leave plenty of room between each one so that you can make notes during the appointment. If you need further help ask to see the supervisor of the relevant department, or failing that get the name and address of the manager.
- If you are attending a medical, take a copy of your claim form for reference, along with any supporting documents. Type out a detailed account of your M.E. and/or take your daily record diary. Do not forget your medications and mobility aids (photograph larger items in position).
- Do not be fazed by the appeals process! The first step is to simply ask for a reconsideration; DWP aims to give you a decision within two weeks, if you do not send them any additional information. If the decision is upheld you must appeal within one month of notification. Citizens Advice can help with Appealing against a DWP benefit decision.
- Please do not give up if you are having problems! You can Contact your MP or if you really have reached the end of your tether, consider generating local media coverage.