Home Carers Useful organisations for MND carers

Useful organisations for MND carers

We do not necessarily endorse the organisations listed here and we cannot take responsibility for the content on external websites. However, we endeavour to ensure that websites we link to are a reliable source of information.

If you need to contact social services, your local authority or council will be able to give you the area contact details.

For a list of useful organisations for people living with MND, click here.

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

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

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

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.

Support for young carers
Action for Children
Work with and support young carers across the UK, providing practical and emotional support to ensure they enjoy and achieve.

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

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

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

The Children’s Society – Young Carers Initiative
An organisation helping vulnerable and disadvantaged children, with information about local young carer groups.

A website designed for young people by young people, offering support after the death of someone close.

Winston’s Wish
A childhood bereavement charity helping children rebuild their lives after the death of someone close. The website includes a section for parents and an interactive area for children and young people.

Young Carers
Support for children or young people who help to care for someone with an illness or disability. This site is hosted by the Carers Trust.

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

Carers from other cultural backgrounds
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.

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

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 Bureau
CAB provides advice to help people resolve many problems encountered in everyday life.

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

The Disability Alliance
The Disability Alliance provides information on social security benefits and tax credits to disabled people.

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

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.

Jobcentre Plus
Guidance on ESA and Income Support claims

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.

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

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

Disability organisations
Ability Net
Advice on computer equipment and software for people with speech or mobility difficulties.

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.

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

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.

Fashion Freaks
Stylish clothes for people affected by disability.

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.

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

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

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.

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


Planning ahead for future care
Help the Hospices
The Hospice Information Service provided by Help the Hospices has a directory of hospice and palliative care services in the UK

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

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.

End of life and bereavement
Arranging a funeral
Guidance and support about arranging a funeral.

Be ready for it
A website to help you discuss end of life with checklists of things to consider.

Bereavement Advice Centre
This organisation has produced an A5 booklet called What to do when someone dies, A practical guide, which helps advise on the legal and practical steps to take after someone’s 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.

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

Lasting Post
Discusses how to plan a funeral and matters arising from bereavement.

National Association of 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 Care
A charity providing a range of services for people who are terminally ill, in their own home, day centres, hospices and care centres.

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.

Raise vital funds to help fight MND

Raise vital funds to help fight MND

Fightback Funds designed for people living with MND

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