Home About MND Information resources Useful organisations and internet sites

Useful organisations and internet sites

 

Woman reading the useful organisations section of our Living with MND guide

 

“Knowing who you can contact and where to begin asking is a great advantage.” Person affected by MND

The organisations shown here provide support on a range of subjects relevant to MND and Kennedy’s disease. This list may be helpful if you have MND, provide support as a carer, or if you are a family member or friend close to someone who has been diagnosed. We try to ensure each organisation is a reliable source, but cannot take responsibility for content on external websites. We do not necessarily endorse any resources, products or services. Select from the following to find out more.

If you are a young person affected by MND, see our support for children and young people page.

Support for daily living with MND or Kennedy's disease

The Able Label
A select clothing site with more designer-led styles of adapted clothing.

Ability Net
Advice on computer equipment and software, and free computer support at home for older or disabled people.

The British Red Cross
Help with care in the home and the community, transport services and loan of medical equipment.

Changing Places
Campaigning for fully accessible facilities for disabled people who cannot use standard accessible toilets.

Demand
Design and Manufacture for Disability.

Direct Enquiries
Details of disabled access and facilities at tens of thousands of locations across the UK.

DisabledGo
DisabledGo provides free detailed access information for disabled people across the UK and Ireland.

Disabled Living Foundation
The DLF offers information on all types of disabled equipment.

Eyedrivomatic
A device that allows users to control an electric wheelchair, using only their eyes.

Fashion Freaks
Patterns and instructions to adapt clothes to suit a seated position for wheelchair users.

Gillette TREO
Razor designed for assisted use.

Kennedy’s Disease Association (KDA)
American organisation supporting people with Kennedy’s Disease. Their website includes a chat room and forum.

Kennedy’s Disease UK 
Charity run by volunteers and people with Kennedy’s disease. Working to raise awareness of the disease.

Leonard Cheshire
Leonard Cheshire Disability exists to change attitudes to disability and to serve people with disabilities around the world.

Living made easy
Part of the Disabled Living Foundation, providing advice and products to assist with clothing and daily living equipment.

The Possum Group
The Possum Group provides up to date technology information in the fields of Environmental Controls and Communication Equipment.

Remap
Remap is a charity which gathers together skilled volunteers to produce one-off pieces of equipment where no existing equipment can help.

Rica
Rica is an independent consumer research charity providing free, practical, impartial reports of products and services for the disabled and older people.

Samaritans
Confidential, 24-hour emotional support.

Shopmobility
Shopmobility hire wheelchairs/scooters on a daily/weekly basis, at shopping or leisure facilities throughout the UK, for general use or to people on holiday.

TalarMade
Produce a range of orthotics products, including the Head Up Collar. The Head Up Collar is a neck support collar for people with neck weakness, and was originally designed specifically for people living with MND.

Think about your life
Free thinking tools to help you think clearly about your life.

Writing to your MP
This website provides information about writing to your MP, Councillor, MEP and Welsh Assembly members.

Support for carers, family and friends

The following organisations may be able to help if you are a carer, or close to someone with MND or Kennedy’s disease. You may also find our information for families, carers and children useful, as listed with our information resources.

Afiya Trust
Support for networks concerned with black and minority ethnic group health and social care issues

Asian Health Agency
A range of support services for Asian elders, disabled people and carers.

Assist UK
A UK wide network of Disabled Living Centres to enable people with disabilities to try products and equipment, with guidance from professional staff.

BME Health Forum
London based organisation improving health service for black and minority ethnic groups, but their site offers advice on rights and how to access support.

Carer centres and services
Allows you to search for carer centres, groups and other services in your area.

Carers Direct
Part of the NHS Choices online service, with information for carers.

Carers’ rights and the Care Act
Information from Carers UK about your rights under the Care Act.

Carers Trust
Support for carers including a wide network of Carers’ Centres and a service for young carers.

Carers UK
Carers UK works to uphold the rights of the many carers in the UK today and provides advice and support.

Chinese National Healthy Living Centre
Advice on health issues including support for carers in the Chinese community

Lesbian and Gay Foundation – LGBT
Advice for lesbian, gay and bisexual people, including carer support.

Samaritans
Confidential 24-hour emotional support.

Working Families
Help for parents, carers and employers to find ways to improve balance between work and home life.

Organisations to help you support children and young people

These links may help if you are a parent or relative of a young person who is close to someone with MND. You may also find our information for families, carers and children useful, as listed with our information resources.

If you are a young person close to someone with MND, our support for children and young people page has information and links to help you.

Action for Children
Supporting young carers across the UK, providing practical and emotional support.

Barnardos
Supporting young people across the UK, including services for young carers.

Bullying UK
Help on bullying issues, with advice for children and young people.

Carers Trust
Email: support@carers.org to find out about the Young Carers Festival and local young carers groups.

Chicks 
Free respite breaks for disadvantaged children, including young carers, from all over the UK.

Child Bereavement UK
Supporting families to rebuild their lives when someone close to them dies.

Childline
Advice and support for children, young people and young carers.

The Children’s Society 
Help for young carers with details of young carers’ groups on the website.

Grief Encounter
Bereavement support for children and young people

Hope Again
Supporting children, young people and adults when someone close to them dies.

Hope Support Services
Online emotional support for children and young people aged 11 and over facing a family health crisis offering Skype, email, one to one and peer support.

iRelate
Online emotional support and advice.

Kooth
Online chat with qualified counsellors

The Mix
An online guide to life for 16-25 year-olds in the UK, offering non-judgmental support and information.

Paul’s Fund 
Grants for children and young carers to have time away at Paul’s Place, in Georgeham, North Devon.

Student Minds
Emotional wellbeing support for students.

Winston’s Wish 
Supporting bereaved children, young people and their families.

Young minds
Information and support for emotional wellbeing and mental health, for children and young people.

Youth Access
Information, advice, counselling and support services for young people

Healthcare organisations and emergency contacts

Emergency contacts

Emergency Services – Telephone: 999
For ambulance, police or fire services.

Emergency SMS
Emergency SMS is a service that allows deaf, hard of hearing and speech impaired people in the UK to send a text message to 999.

Urgent health advice in England 
Telephone: 111
For urgent, but non-emergency health advice.

Urgent health advice in Northern Ireland
This online page will help you find out-of-hours medical guidance.

Urgent health advice in Wales 
Telephone: 0845 46 47
For urgent, but non-emergency health advice. The new contact number 111 is being rolled out and may be available in your area.

Healthcare contacts

Beacon Continuing Healthcare
Provide representation for families struggling to navigate the continuing healthcare system. In depth information about Continuing Healthcare on their website. Also can provide people in England with up to 90 minutes of free advice, by trained advisers, on Continuing Healthcare.

BME Health Forum
An organisation helping to improve health services for black and minority ethnic groups. Their work is based in London, but their site includes patient information on rights for healthcare and how to access support.

Health and Care Professions Council (HCPC)
A regulatory body with a register of health professionals who meet their standards of practice, including psychologists, occupational therapists and speech and language therapists.

Health in Wales (NHS Wales)
Online information on NHS services in Wales.

Healthtalk.org
A website of personal health experiences, including a series of interviews with people living with or affected by MND.

Medic Alert
An identification system for individuals with medical conditions, usually in the form of bracelets or necklets, supported by a 24 hour emergency telephone service.

MND Organisations
Links to other MND Associations.

Neurological Alliance
Collective voice for 80 organisations working together to make life better for people in England with a neurological condition.

NHS 111 Service
Online and telephone help and support service, available whenever you need health advice and information. This service currently operates in England and some parts of Wales.

NHS Choices
The main online reference for the NHS.

NHS Direct Wales
Similar to NHS 111 Service, but for Wales.

NHS Northern Ireland
Information on NHS services in Northern Ireland. This is an online service.

The Patient Advice and Liaison Service (PALS)
PALS is a local service in all NHS Trusts in England, providing confidential advice and support to families and carers, and information on the NHS and health matters.

Patientslikeme
Free website where people can share their health data to track their progress, help others, and help other patients live better everyday.

Patient Opinion
Independent non-profit feedback platform for health services. Allows patients and health services to communicate with each other.

Symptoms, therapies and treatments

Association of Reflexologists
For advice and therapists in reflexology.

BDA – The Association of UK Dietitians
Representing dietitians and providing those working in nutrition with advice about how they work.

British Acupuncture Council
For guidance about traditional acupuncture and qualified therapists.

The British Association of Art Therapists
The professional organisation for art therapists in the UK.

The British Association for Music Therapy
The association provides information about music therapy for practitioners and the public.

British Homeopathic Association
Details and information about homeopathy and practitioners.

British Lung Foundation
For information and support on a number of subjects including travel and transport, oxygen and equipment.

The British Medical Acupuncture Society
For advice and therapists in acupuncture.

The British Pain Society
Information leaflets and advice on managing pain.

Chartered Society of Physiotherapy
A professional body working with its members and external bodies to achieve and promote excellence in physiotherapy. They have a section for the public with information on services and a search engine for you to find a local physiotherapist.

College of Sexual and Relationship Therapists (COSRT)
Formerly the British Association for Sexual and Relationship Therapy, COSRT provides information on sexual problems and provides lists of local therapists.

Complementary and Natural Healthcare Council (CNHC)
CNHC is a voluntary regulator set up with government support to provide a public register of complementary therapists.

Complementary Therapists Association
The Complementary Therapists Association offer advice about qualified practitioners and may be able to provide answers to specific therapy questions.

Counselling Directory
Provides information on a huge support network of counsellors, enabling people to find a qualified counsellor close to them and appropriate for their needs.

Dementia UK
Provide Admiral Nurses, specialist dementia nurses who give practical and emotional support to families affected by dementia.

Federation of Holistic Therapists
A professional association who can help you locate qualified complementary and beauty therapists in the UK and Ireland.

The Frontotemporal Dementia Support Group
Information and advice for people caring for someone with FTD

Health in Wales
Information on NHS services in Wales, including a directory of the Welsh health boards.

Hypnotherapy Directory
Guidance on qualified hypnotherapists and what to expect from hypnotherapy.

The International Federation of Professional Aromatherapists
Contact this federation for details and locations of registered practitioners in aromatherapy.

Medicines and Healthcare Regulatory Agency (MHRA)
A government agency within the Department of Health, responsible for ensuring that medicines and medical devices work and are acceptably safe.

NHS Choices
The main online reference for the NHS, including information on continuing healthcare.

Health and Social care online (Northern Ireland)
Gateway to health and social care services in Northern Ireland.

Royal College of Occupational Therapists
The professional body for all occupational therapy staff in the United Kingdom with information on how to find an OT.

Royal College of Speech and Language Therapists
The main professional body for speech and language therapists, who can help you to contact qualified therapists.

Steeper Group
Products and services in prosthetics, orthotics and assistive technology.

Therapy Directory
A website that enables you to seek out qualified alternative and complementary therapists.

World Federation of Neurology Amyotrophic Lateral Sclerosis
Linking clinicians and researchers to find treatments and cures for ALS.

Young Dementia UK
National source of information and support specifically about young onset dementia (under 65 years old).

Work, benefits and social care

Advice Now
Independent, not-for-profit website providing information on rights and the law.

Age UK
Dedicated to helping everyone make the most of later life. Website includes information about various benefits and entitlements.

Care Quality Commission
The Care Quality Commission is the independent regulator of health and social care in Britain.

Carers UK
Carers UK works to uphold the rights of the many carers in the UK today and provides advice and support.

Citizens Advice
Citizen’s Advice provides advice to help people resolve many problems encountered in everyday life.

The Department for Work and Pensions
Advice on services and benefits for working age people, families, the retired, and disabled people and their carers.

Disability Rights UK
Produce information, products and services developed by and for disabled people. Includes factsheets and an advice line.

GOV.UK
This Government website offers a wide range of public service information, and services, online.

Health and Care Professions Council (HCPC)
A regulatory body with a register of health professionals who meet their standards of practice, including psychologists, occupational therapists and speech and language therapists.

Independent Age
Free information and advice for older people and their families on care and support, money and benefits and health and mobility.

National Debtline
Helpline for people with debt problems in England, Wales and Scotland, offering free confidential advice.

NI Direct
The online service for the Department for Social Development in Northern Ireland. Has strategic responsibility for urban regeneration, community and voluntary sector development, social legislation, housing, social security benefits, pensions and child support.

The Relatives and Residents Association
The Relatives and Residents Association exists for people needing or living in residential care and their families and friends.

SEAP
Independent advocacy services to help people resolve issues or concerns about health and social care services, including support during the NHS Complaints Procedure.

Turn2Us
Turn2us will help access any money available to people, through benefits, grants and other financial help.

Speech and communication support

Ability Net
Advice on computer equipment and software for people with disabilities.

Able
Empowering people with impairments through creativity and social media. Includes Able Radio, a community radio providing a voice for people with a disability or a health condition.

CereVoice Me
Online voice cloning tool which allows you to create a computer version of your own voice.

Communication Matters
An organisation focused on supporting people with communication difficulties through exploring all types of alternative communication.

Hospital Communication Book
This book can help communicate your needs during a stay in hospital. There is a charge for ordering a printed version, but key sections can be used for free.

Indi
An all in one speech tablet.

ModelTalker
Speech synthesis software package designed to benefit people who are losing or who have already lost their ability to speak.

My-own-voice
A service that allows you to create a text-to-speech voice from your own voice.

PCEye Plus
A new eye tracking camera that combines eye gaze, dictation, switch selection and infra-red control.

Tecla
A switch interface device that can control multiple iOS or Android tablets, phones or computers, using various access methods.

Travel and transport

Adapted Vehicle Hire
Wheelchair Accessible Vehicles (WAVs) and adapted vehicles for hire.

Automobile Association (AA)
Provide information on AA inspected accommodation in Britain and Ireland in their Disabled Travellers’ Guide.

CS Disabled Holidays
Provide funding towards holidays and respite breaks for disabled adults with neurological or neuromuscular disorders.

DisabledHolidays.com
Travel agency for people with disabilities. They can support with choosing, booking, preparing to go, travelling and coming home from holidays in the UK and abroad.

Disaway Holidays
Organises group holidays for physically disabled people. The trust provides a helper who looks after the needs of one holidaymaker, assisting with washing, dressing and toileting and general support.

Dptac
Disabled Persons Transport Advisory Committee.

Driving Mobility
16 centres offering practical information on car adaptations.

Enable Holidays
Offers a tailor made service to include transfers in adapted cars, villas, hotels, apartments with disabled equipment and/or hire equipment.

Euan’s Guide
Website and app where disabled people review venues around the UK and further afield for their disabled access and facilities.

Eyedrivomatic
A device that allows users to control an electric wheelchair, using only their eyes.

Grid Pad Power Bank
A battery pack that will extend the life of Grid Pad devices for up to 20 hours.

Jumbulance
For hiring accessible coaches (Jumbulances) to go on group holidays or days out in the UK and Europe.

Limitless Travel
Provide holidays, tours, accommodation and travel for disabled people.

Mobility at Sea
For hiring mobility equipment on a cruise.

Motability
For details about leasing through the Motability scheme.

MyHailo
A key fob that you can buy, which can be pressed to call for help refuelling your car at selected petrol stations in the UK.

Open Britain
OpenBritain is a guide book and web site providing information on UK tourism and holidays, for people with disabilities and specific access requirements.

Revitalise
Revitalise (formerly known as Vitalise) is a national charity providing respite holidays for disabled people and carers, with 24-hour on-call nursing care and personal support.

TrainTaxi
The guide to taxis serving all train, tram, metro and underground stations in the UK.

Tourism for all
A national charity dedicated to making tourism welcoming to all.

Visit England
Information on travelling in England, including accessibility for disabilities.

WAVSGB
Commercial site for wheelchair accessible vehicles across most of England and Wales, with national delivery.

The Wheelyboat Trust
The Wheelyboat Trust is a registered charity which helps people enjoy the waterways of the UK.

The Willow Foundation
The Willow Foundation is a national charity providing special days out for seriously ill 16 to 40 year olds.

Interests and entertainment

The Calvert Trust
Activity centres in the UK that enable disabled people to try out different outdoor activities.

Euan’s Guide
Website and app where disabled people review venues around the UK and further afield for their disabled access and facilities.

Inclusive Britain
Website and app that allows you to locate hotels, restaurants, pubs, shops, museums and more based on your specific access requirements and location within the UK.

SpecialEffect
An organisation that uses accessible equipment and technology to help disabled people play video games.

Thrive
Thrive is a UK national horticultural charity that promotes the use of gardening and horticulture.

Emerging technology

The details provided below relate to a selection of newly emerging technologies that the MND Association has been made aware of. We are unable to recommend or endorse these items and do not have access to additional information. Please follow the links provided for further details.

This section is regularly updated. For  established products or new brands, see the other organisation sections on this page – sometimes links shown here are moved into other sections if relevant technology becomes  available. See our archive page for other technology featured previously. All product listings are shown solely to highlight technological advancement that may one day benefit people with MND.

New technology needs to be rigorously tested and approved before it becomes available through statutory services.  This means the services or products shown here are unlikely to be available through health or social care.

The technologies shown below can be very expensive to purchase and may not be suitable for everyone. We recommend a full assessment of your needs by a relevant health and social care professional, such as a speech and language therapist or occupational therapist, before considering any assistive technology. This can help prevent frustrating and costly mistakes.

Assistive technology and communication aids

Article – Alter-ego intelligent user interface
A news article about a wearable device that can read people’s minds when they use an internal voice, allowing them to control devices and ask queries without speaking.

Article – brain reading device
A news article about a brain reading device that can create simple yes or no responses.

Gazespeak
An eye tracking app in development that utilises a smartphone camera.

Jaco robotic arm
A robotic arm designed to accomplish many tasks of daily life.

EyeSpeak
Communication glasses featuring a micro camera which tracks the eye and a remote keyboard displayed on the lens.

Wheelchairs and wheelchair accessories

Glasschair
A system in development to enable people to control certain types of wheelchair with ‘smart’ computerised glasses. This link features a demo video in German, but shows the system in action.

GO Wheelchair
A made-to-measure 3D-printed wheelchair, demonstrating an emerging technique to produce bespoke wheelchairs (open with Google Chrome for full website functionality)

PneuChair
A new waterproof motorized wheelchair that runs entirely on compressed air

Planning ahead for future and end of life care

Hospice UK
Website providing information on hospice and palliative care services in the UK and abroad.

Macmillan Cancer Support
Focus mainly on people affected by cancer, but do provide some support for non-cancer patients.

Marie Curie
Provide care and support for people with life-shortening illnesses in the UK.

My Living Will
A website providing the ability to create both an Advance Decision to refuse treatment and an Advance Statement of your preferences and wishes.

The National Council for Palliative Care (NCPC)
The umbrella charity for all those involved in palliative and hospice care in England, Wales and Northern Ireland.

The Office of Care and Protection
The organisation that handles applications of Enduring Power of Attorney in Northern Ireland.

The Office of the Public Guardian
The organisation that handles applications for Lasting Power of Attorney in England and Wales.

Bereavement support

Arranging a funeral
Guidance and support about arranging a funeral.

AtALoss.org
Search for a bereavement support organisation near you.

Bereavement Advice Centre
Organisation that supports and advises people on what they need to do after a death.

British Humanist Association
Provide guidance and support for funerals where no religious content is wanted.

Childhood Bereavement Network
Provide guidance, information and directions to local and national services for support.

Cinnamon Trust
The Cinnamon Trust is a charity for elderly and terminally ill people and their much loved pets.

Cruse Bereavement Care
The largest bereavement charity in the UK, offering information, advice and support.

Dying Matters
Aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.

Funeral Planning Authority
An organisation that regulates providers in the UK pre-paid funeral plan industry.

Institute of Civil Funerals
An organisation that can advise on civil funerals.

Lasting Post
Helping people following the death of a loved one with free independent advice.

Macmillan Cancer Support
Focus mainly on people affected by cancer, but do provide some support for non-cancer patients.

Marie Curie
Provide care and support for people with life-shortening illnesses in the UK.

The National Society Of Allied And Independent Funeral Directors
Advice on funeral arrangements and location, of registered funeral directors.

Natural Death Centre
Information and advice about arranging a funeral without a funeral director and using a natural burial ground.

Sue Ryder
Sue Ryder provides hospice or neurological care for people with life-changing conditions.

Tell Us Once
Enables someone to inform government departments that a person has died in order to stop benefits and related support, without having to make repeated contact. The service is available in England and Wales.

Tell us your thoughts on the About MND area of the website Page last updated: 08/18
Next review: 06/19

For further information and support, contact our MND Connect helpline:
MND Connect logo MND Connect Phone Number - 0808 802 6262

See our online forum for support and sharing with others affected by MND:
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