Useful Organisations
The websites and organisations listed below offer practical advice, information, equipment, services and support for people affected by Motor Neurone Disease.
Although the Association offers no recommendations, the following list contains to the best of our knowledge, accurate, helpful information and the services offered are considered beneficial for people with MND.
Ability Net
Ability Net is a specialised communication company which can advise on, and provide pieces of software, or complete computer systems, to help with communication problems experienced by disabled people.
Phone: 0800 269 545
Ace Centres
Centres based in Oxford and Oldham providing services to support people living with communication difficulties.
The ACE Centre is a charitable company that is independent of all manufacturers and suppliers in the services they provide. They offer a wide range of services to support communication and learning through the use of Assistive Technology (AT) and Alternative & Augmentative Communication (AAC) systems and resources for children and adults with physical and communication difficulties.
Benevolence Today
Benevolence Today is the national umbrella body for benevolent charities who provide aid and advice to individuals in need. Benevolence Today is all about connecting people in difficulty with the work-related charities that can help.
The website is a link to your job-related charity, which may be able to help you (or someone you know) if you are facing difficulties. The help on offer may include grants, sheltered housing, residential/nursing accommodation/care, and much more.
Phone: 01707 651777
Blue badge
National Association of Blue Badge Holders. The object of the Association is to help people with disabilities to integrate more effectively with the community at large and receive their rights in regards to monetary and physical assistance and access.
Build-UK Website
Kings College MND Centre has set up the Build-uk website specifically for people affected by MND.
The site can be used to contact others with a similar interest in MND - to decide what information and services should be provided, and to tell people what you want and to share what you know.
A recently added voting page and a chat room enable views to be shared and communication with other people affected by MND.
Carers UK
Carers UK is an organisation whose aim is to uphold the rights of the many carers in the UK today. The strive to ensure that society recognises the true value of carers contribution to society and that carers receive the help and support they deserve.
Changing Places
The Changing Places Consortium has launched a campaign on behalf of the many disabled people who cannot use standard accessible toilets.
They need Changing Places toilets. These are toilets with enough space for disabled people and their carers, and the right equipment, including a height adjustable changing bench and a hoist.
Citizens Advice Bureau
By providing free advice and information the CAB can help people resolve many problems encountered in everyday life.
Cinnamon Trust
The Cinnamon Trust is a charity for elderly and terminally ill people and their much loved pets. Cinnamon Trust addresses the problems that owners encounter in the daily care of their pets, in addition to taking life-time care of bereaved pets.
Counsel and Care
Counsel and Care is a national charity whose aim is to get the best care and support for older people, their families and carers. They do this by providing advice, information, financial support and by influencing policies, services and funding.
Cruse Bereavement Care
Cruse can provide information and advice to anyone who has been affected by bereavement.
Phone: 0870 167 1677
0208 940 7638
The Commission for Social Care Inspection
The Commission for Social Care Inspection (CSCI) is the independent social care watchdog for England. CSCI inspects and reports on social care services to help improve quality for people who use services. Visit CSCI's award-winning website where you can find out: -
- What you have a right to expect from your care service
- What to do if you are not happy with the care that you get
- How to get involved in inspections.
Direct Enquiries
Direct Enquiries details the disabled access and facilities at tens of thousands of properties across the UK. In addition, London Underground has recently launched an online service that provides information on the access available at every underground station.
Direct Gov
This Government website offers a wide range of public service information, and services, online.
Disabled Holiday Directory
A website giving information on suitable holiday accomodation for people with disabilities.
The Disability Alliance
The Disability Alliance provides information on social security benefits and tax credits to disabled people, their families, carers and professional advisers; undertakes research into the needs of disabled people, with particular emphasis on income needs and aims to promote a wider understanding of the views and circumstances of all disabled people.
Disabled Living Foundation
The DLF offers information on all types of disabled equipment. They hold a list of companies which supply the equipment and can advise on your nearest Disabled Living Centre where you will be able to see different types of equipment.
DLF helpline: 0845 130 9177
Department for Social Development in Northern Ireland
Department for Social Development in Northern Ireland.
The Department for Social Development was established as part of the Northern Ireland Executive.
It has strategic responsibility for urban regeneration, community and voluntary sector development, social legislation, housing, social security benefits, pensions and child support.
Department of Work and Pensions
Advice on services and benefits for working age people, families, the Retired, and Disabled people and their carers, from the Department of Work and Pensions.
Equality and Human Rights Commission
The Disability Rights Commission has now closed and has been replaced by the Equality and Human Rights Commission.
The Equality and Human Rights Commission champions equality and human rights for all, working to eliminate discrimination, reduce inequality, protect human rights and to build good relations, ensuring that everyone has a fair chance to participate in society.
Forum of Mobility Centres
16 centres offering practical information on car adaptations. Some centres also offer advice on selection of wheelchairs and scooters and all offer a free telephone information service.
Holiday Care
Holiday Care provides information about transport, accomodation, holidays and respite care establishments in the UK and abroad.
Hospice UK
Combining the expertise of St Christophers Hospice and Help the Hospices, this website provides information on hospice and palliative care services in the UK and abroad.
Independent Living Fund
National resource dedicated to the financial support of disabled people enabling them to choose to live in the community rather than residential care.
ICAS
ICAS or the Independent Complaints Advocacy Service, is a free confidential service for patient's of the NHS who are unhappy with the treatment they have received.
ICAS can help by providing advocates who can help and support you through the complaints procedure.
Information Technology Can Help (ITCH)
ITCH is a programme of the British Computing Society (BCS). The ITCH Network provides disabled people with effective Information Technology solutions. In the past two years alone, ITCH Network has made over 2,000 visits, solving many hardware and software problems, as well as helping people to gain confidence using a computer.
ITCH offers free computer assistance to individuals with disabilities by providing skilled volunteers who visit disabled people in their homes and at other locations.
Leonard Cheshire
Disability charity Leonard Cheshire is to launch a new web portal later this year aimed at all disabled people within the UK.It will feature information on a range of topics – including benefits, employment and access - and enable users to add their own experiences, comments, and to chat and blog online.If you are interested in taking part in a pilot of the service later this spring, please contact: Stephen.elsden@lc-uk.org
MATILDAH: Advanced Technology and Independent Living Research
Project funded by the Economic and Social Research Council on "the role, application and use of advanced technology in the lives of disabled people"
OpenBritain
OpenBritain is a guide book and web site providing information on UK tourism and holidays, for people with disabilities and specific access requirements.
Patient Opinion
Patient Opinion is a not for profit social enterprise providing a website where patients and their carers can share their hospital experiences in their own words and in their own time.
The Possum Group
The Possum Group provides up to date technology information in the fields of Environmental Controls and Comunication Equipment.
The Princess Royal Trust for Carers
The Princess Royal Trust for Carers is the largest provider of comprehensive carers support services in the UK. Through its unique network of 133 independently managed Carers' Centres , 83 young carers services and interactive websites, Carers.org and YC Net, The Trust currently provides quality information, advice and support services to almost 310,000 carers, including over 15,500 young carers.
Radar
RADAR is a national network of disability organisations and disabled people. We represent our members by fast-tracking your opinions and concerns to policy-makers and legislators in Westminster and Whitehall, and launching our own campaigns to promote equality for all disabled people.
Red Cross
The Red Cross offers a medical loan service, which provides short-term loans of equipment throughout the UK. It also offers a transport service, with volunteer escort if necessary, this can help to provide freedom and independence for people who have problems getting to medical appointments or with every day essentials, such as shopping. A therapeutic massage service is also available in many areas
Phone: 020 7201 5027
The Relatives & Residents Association (R&RA)
Seeking support or information about going into care? The Relatives and Residents Association exists for people needing or living in residential care and their families and friends. Advice line on 0207 359 8136 (Mon - Fri 9.30am - 4.30pm)
Remap
Remap; custom made equipment helping people with disabilities to achieve independence and enjoyment of life's opportunities.
Remap is a charity which gathers together skilled volunteers to produce one-off pieces of equipment where no existing equipment can help.
Phone: 0845 1300 456
Ricability
Ricability is the trading name of the Research Institute for Consumer Affairs (RICA). They are a national research charity dedicated to providing independent information of value to disabled and older consumers. Motability Operations commissioned user research and car measurement data collection to provide comparative information on different car models for older and disabled people. The main focus is on ease of getting in and out of the cars and storing equipment in the boot. Ricability in a joint project with Motability have developed a search tool so people can enter the measurements they need to find a shortlist of suitable cars, for example:
- Height of the seat from the ground
- Entry space: door width and distance between the seat and the door
- Door height
- Door opening angle
- Boot size: to find which cars can comfortably carry a folded/unfolded wheelchair in the boot
Samaritans
Confidential, emotional support.
Phone: 08457 909090
Thrive
Thrive is a UK national horticultural charity that promotes the use of gardening and horticulture for training and employment, therapy and health.
The Wheelyboat Trust
The Wheelyboat Trust is a registered charity which helps people enjoy the waterways of the UK.
It encourages other organisations to aquire wheelyboats for disabled visitors and helps groups and organisations aquire wheelyboats for their own use.
Which Hospital Companion
This guide aims to help you find out everything you need to know about going into hospital. Advice is given on how to ask questions and what you should expect from all areas of your hospital stay.
Willow Foundation
The Willow Foundation is a national charity providing special days out for seriously ill 16 to 40 year olds.
Special days offer much needed time out from the stresses of living with a life threatening condition, such as MND.
Young Carers
Young carers are children or young people who look after someone in their family who has an illness or disability.
They take on practical tasks and emotional caring responsibilities that would normally be expected of an adult.
The Young Carers website helps to support these youngsters, by letting them know what help and support is available and how to get it.
