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Useful Organisations

The following links will help start your search for further information on a range of relevant subjects to PSP & CBD.

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

Everyday living with PSP & CBD

The British Red Cross

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

Age UK

Advice and information on a wide range of subjects to enhance daily living.


Range of clothing meeting the special needs of disabled adults. Online store, catalogue request, fitting information and washing advice.


Range of adaptive and open back clothing for the disabled and elderly.

Disabled Living Foundation

Solutions for independent living. Provides advice and equipment for disabled people.

Disabled Go

Provider of access information for disabled people in the UK – plan trips, apply for jobs and read the latest news online.


National charity working through local groups of skilled volunteers to help disabled people achieve independence and a better quality of life.


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


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



UK national charity, working to improve life for those who have communication, eating, drinking and swallowing difficulties.

Ability Net

Advice on computer equipment and software for people with speech or mobility difficulties.

Communication Matters

Support for people who find communication difficult due to little or no speech.

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 for free.

The Sequal Trust

Charity offering assessment and fundraising services for communication aids for children and adults with speech and/or movement and learning difficulties throughout the UK.

Travel and Transport

Automobile Association (AA )

Provides information on AA inspected accommodation in Britain and Ireland in their Disabled Travellers’ Guide.

Blue Badge – Department of Transport

Information about Blue Badge application.

DVLA – Drivers medical section

Medical conditions rules and entitlements to drive.

Disaway Trust

The Disaway Trust is a registered charity that organises group holidays with physically disabled people.

Enable Holidays

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

Limitless Travel

Disabled friendly and accessible holidays


For details about leasing or hire purchase through the Motability scheme.

Mobility Centres

Mobility solutions for disabled people including driving assessments.


Provides breaks for disabled people and their carers.

The Wheelyboat trust

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

Symptoms, Alternative 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.

British Acupuncture Council

For guidance about traditional acupuncture and how to find a qualified therapist.

The British Association for Music Therapy

Information about music therapy for practitioners and the public.

The Butterfly Scheme

Provides a system of hospital care for people living with dementia.

British Homeopathic Association

Details and information about homoeopathy and practitioners.

The British Pain Society

Information leaflets and advice on management of pain.

Chartered Society of Physiotherapy

Professional body with a section for the public including information on services and a search engine to find a local physiotherapist.

Complementary and Natural Healthcare Council (CNHC)

Voluntary regulator providing a public register of complementary therapists.

Complementary Therapists Association

Advice about qualified practitioners and frequently asked questions.

Counselling Directory

Information on where to find a qualified counsellor.

Dementia UK

Information on aspects of dementia and information on Admiral Dementia Nurses.

British Dental Health Foundation

Free and impartial dental helpline.

Health in Wales

Information on NHS services in Wales.

Hypnotherapy Directory

Guidance on qualified hypnotherapists.

The International Federation of Professional Aromatherapists

Details of registered practitioners in aromatherapy.

The Institute for Complementary and Natural Medicine

Advice on safe and best practice of complementary medicine with information on practitioners.


Information on mental health issues and treatments.

NHS Choices

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

NHS Northern Ireland

Information on NHS services in Northern Ireland.

The Patient Advice and Liaison Service (PALS)

A local service in all NHS Trusts in England, providing confidential advice and support to families and carers and information on NHS and health matters.

Patients like me

Patients helping patients live better everyday.


Advice given to all nutrition patients, their carers and Health and Social Care Professionals.

Rare Dementia Support

Specialist support services for individuals and those affected by a rare dementia diagnosis.


Available 24 hours a day to provide confidential emotional support for people who are experiencing feelings of distress, despair or suicidal thoughts.

NHS Health Scotland

Information on NHS services in Scotland

Benefits and Social Care

Age UK

Dedicated to helping everyone make the most of later life. The website includes information about a wide range of subjects including financial and care subjects.

Care Quality Commission

Independent regulator of health and social care in England.

Carers UK

Information about carers rights provides advice and support to all carers in UK.

Citizens Advice Bureau

Provides free, confidential and impartial advice. To help everyone find a way forward, whatever problem they face.

Counsel and Care

National charity whose aim is to get the best care and support for older people, their families and carers.

Disability Rights UK

Information, products and services developed by and for disabled people.


Government website offering a wide range of public services information.

The Relatives and Residents Association

Providing support 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 an NHS complaints procedure.


Grants and benefits search engine.

Debt and Borrowing

The Money Advice Service

Free and impartial money advice , helping people take control of debt, get free debt advice, and find out how to borrow affordably

Caring for someone with PSP or CBD

Carers Rights and the Care Act

Information from the NHS about your rights under the Care Act.

Carers Trust

Largest provider of comprehensive carers support services in the UK.

Carers UK

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

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.

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 the Public Guardian

Information and application for Power of Attorney.

Leonard Cheshire

Residential, respite, supported living and care at home.

Better Caring

A searchable database of all registered care homes in the UK.

Care Quality Commission

Health and social care regulator for England.

End of Life and Bereavement

Arranging a funeral

Guidance and support when arranging a funeral.

Bereavement Advice Centre

This organisation provides a booklet called ‘What to do when someone dies, A practical guide’.

British Humanist Society

Guidance and support when arranging a funeral where no religious content is required.

Cinnamon Trust

The only specialist national charity for people in their last years and their much loved, much-needed companion animals.

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 end of life.


A free confidential bereavement web-chat support service, available 9am to 9pm Monday- Friday.

Speak directly to a professional bereavement counsellor on the GriefChat website or use the Grief Chat chat in the bottom right hand corner or this web page.

Lasting post

Helps people following the death of a loved one with free independent advice on all the tasks that will need to be completed.

Natural Death Centre

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

Sue Ryder Care

Charity providing a range of services for people who are terminally ill, in their own home, day centres 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 contact.


Living with PSP & CBD

A wide range of information and support is available to those affected by PSP and CBD from PSPA and statutory services.

Find out more

Helpline and Information Service

“I spoke to you on several occasions and genuinely do not know how I would have coped at the time without you. You were always supportive, informative and helped steer me through a very difficult time for my husband and me.”

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