Useful organisations and internet sites

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

Ability Net
Helps disabled people of any age to use technology and provide advice and free information resources.

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

Changing Places - Toilet Map
Changing Places is an organisation that campaigns for fully accessible facilities for disabled people who cannot use standard accessible toilets. This search site can help you find your nearest Changing Places fully accessible toilet.

DEMAND
Design and Manufacture for Disability provides advice and custom design of equipment for disabled people. 

AccessAble
Detailed access information for disabled people across the UK and Ireland.

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

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
Up to date technology information on 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.

Research Institute for Disabled Customers (RIDC)
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 and scooters on a daily and 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, a neck support collar for people with neck weakness.

We are undefeatable
Suggested ways to stay active for people with long term conditions, who may have limited ability for movement.

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

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.

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

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
Search for carer centres, groups and other services in your area.

Carers’ rights and the Care Act
Information from the 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
Supports the rights of the many carers in the UK and provides advice and support.

My Care My Home
A free information and advice charity that supports people navigating the care system.

Race Equality Foundation
Promoting race equality in social support and public services.

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.

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.

Family Lives
Help on all aspects of family life including bullying issues, with advice for children and young people.

Carers Trust
Email: [email protected] to find out about the  and local young carers groups.

Go beyond
Free respite breaks for disadvantaged children aged 8-15, including young carers, from all over the UK.

Child Bereavement UK
Supporting families 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 and the Young Carers Festival.

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.

Kooth
Free, safe and anonymous online support for young people.

The Mix
An online guide to life for 13-25 year-olds in the UK, offering non-judgmental support and information.

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.

Emergency contacts

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

Using Text Relay or Emergency SMS to contact 999
You can use either a relay service or Emergency SMS call or text 999 in an emergency if you have speech difficulties. You need to register in advance to use Emergency SMS.

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: 111
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 and in depth information for families struggling to navigate the continuing healthcare system. People in England can get 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.

Care Opinion
Allows patients to share their stories online for other patients and health services to see.

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.

MedicAlert
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 over 80 organisations working together to make life better for people in England with a neurological condition.

NHS UK
The main online reference for the NHS.

NHS Direct Wales
Health advice and information for people living in Wales.

NHS Specialised Assistive Technology Services
NHS guidance on their services for augmentative and alternative communication (AAC) and environmental controls.

Health and Social Care Northern Ireland (NHS Northern Ireland)
Online information on NHS services in Northern Ireland.

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.

Association of Reflexologists
For advice on reflexology and to find therapists.

ASLTIP - Association of Speech and Language Therapists in Independent Practice
Guidance on how to find qualified speech and language therapists

BBC Music Memories
Music therapy can help lift mood - the BBC have provided this site to help you find music you love, by genre and decade.

BDA – The Association of UK Dietitians
Advice on food and nutrition, and how to find a dietitian.

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
Provides information about music therapy for practitioners and the public.

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 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)
Provides information on sexual issues 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.

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. Website includes detailed information on different types of dementia, including Frontotemporal Dementia (FTD).

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

Health and Social care Northern Ireland (NHS Northern Ireland)
Online information on 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).

Advicenow
Independent, not-for-profit website providing information on rights and the law in England and Wales.

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

Care Inspectorate Wales
Registers, inspects and takes action to improve the quality and safety of services for the wellbeing of people of Wales.

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

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
Online government advice on a variety of welfare topics, including support for disabled people in England and Wales.

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
Health advice and information service for Wales.

The Regulation and Quality Improvement Authority
Responsible for monitoring and inspecting the availability and quality of health and social care services in Northern Ireland.

Care Rights UK (previously The Relatives and Residents Association)
The Relatives and Residents Association exists for people needing or living in residential care and their families and friends.

The Advocacy People
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.

Think Local Act Personal
National partnership of organisations committed to personalisation and community-based support. Their website includes a care and support jargon buster.

UK Care Guide
Guidance on seeking external care support, with information and resources across a wide range of subjects.

The following links may help you find national directories of care providers, including support in your own home, or inspection results for residential or nursing care homes.

Contact your local authority in England and Wales, or your local health and social care trust in Northern Ireland, to find out about local care providers in your area.

Care Inspectorate Wales
Registers, inspects and takes action to improve the quality and safety of services for the wellbeing of people of Wales.

Care Quality Commission
The Care Quality Commission is the independent regulator of health and social care in England, and their website includes inspection results.

My Care My Home 
Helping people find and fund the care that they need.

Care Rights UK
Care Rights UK is the new name for the Relatives and Residents Association to help those needing or living in residential care, and their families and friends.

The Regulation and Quality Improvement Authority
Responsible for monitoring and inspecting the availability and quality of health and social care services in Northern Ireland.

SuperCarers
A national service to help people find appropriate care providers in their area.

UK Care Guide
Guidance on seeking external care support, with information and resources across a wide range of subjects.

We cannot endorse particular providers, but if you are worried about finding travel insurance with MND, our MND Connect helpline can discuss your needs and give basic guidance.

See below for providers that may be able to help with general travel and holiday needs.

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.

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.

Disabled Persons Transport Advisory Committee (Dptac)
Advises the government on transport legislation, regulations and guidance and on the transport needs of disabled people, ensuring they have the same access to transport as everyone else.

Discover Northern Ireland
Information on travelling in Northern Ireland. Use the search function on the website to look for accessible activities.

Driving Mobility
Network of 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.

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

Limitless Travel
Provide accessible 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.

Revitalise
Revitalise 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. Use the search function on the website to look for accessible activities.

Visit Wales
Information on travelling in Wales. Use the search function on the website to look for accessible activities. 

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.

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.

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

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.

We are undefeatable
Suggested ways to stay active for people with long term conditions, who may have limited ability for movement.

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. 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
A news article about 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.

Wheelchairs and wheelchair accessories

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)

Munevo
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.

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

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

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 downloaded and used for free.

Next Generation Text (NGT) Service
Helps people with speech difficulties communicate with anyone over the phone, using the relay service.

NHS Specialised Assistive Technology Services
NHS guidance on their services for augmentative and alternative communication (AAC) and environmental controls.

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

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. Ask your health and social care team for advice about Macmillan nurses and services in your area. 

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

My Care My Home 
Later-life planning including Lasting Power of Attorney (LPA) and Wills.

National Bereavement Service
Support on what to do when someone close to you dies.

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.

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

Bereavement Advice Centre
Advice on legal and practical steps after someone’s death.

The Bereavement Service (Northern Ireland)
When informed of a death, they tell all offices paying benefits to the person and can check entitlement to bereavement benefits.

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

Cinnamon Trust
A charity for elderly and terminally ill people and their much loved pets.

The Compassionate Friends
Support for people who have experienced the death of a child of any age.

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

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 and their families.

Marie Curie
Provide support for people with life-shortening illnesses in the UK, and bereavement support for their families.

National Bereavement Service
Support on what to do when someone close to you dies.

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, and support for their families.

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.

Widowed and Young (WAY)
Support groups for people across the UK aged under 50 when their
partner died.