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.
Useful Organisations
The following links will help start your search for further information on a range of relevant subjects to PSP and 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.
Able2Wear
Range of clothing meeting the special needs of disabled adults. Online store, catalogue request, fitting information and washing advice.
Adaptawear
Range of adaptive and open back clothing for the disabled and elderly.
Direct Enquiries
Details of disabled access and facilities at tens of thousands of locations across the UK.
http://www.directenquiries.com/
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.
Remap
National charity working through local groups of skilled volunteers to help disabled people achieve independence and a better quality of life.
Ricability
Ricability is an independent consumer research charity providing free, practical, impartial reports of products and services for the disabled and older people.
Shopmobility
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.
Communication
ARCOS
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.
https://www.abilitynet.org.uk/
Communication Matters
Support for people who find communication difficult due to little or no speech.
www.communicationmatters.org.uk
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.
www.communicationpeople.co.uk/
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.
http://www.theaa.com/travel/index.jsp
Blue Badge – Department of Transport
Information about Blue Badge application.
https://www.gov.uk/apply-blue-badge
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.
http://www.enableholidays.com/
Limitless Travel
Disabled friendly and accessible holidays
http://www.limitlesstravel.org/
Motability
For details about leasing or hire purchase through the Motability scheme.
Mobility Centres
Mobility solutions for disabled people including driving assessments.
Revitalise
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.
Sexual Advice Association
Charitable organisation which aims to improve sexual health and wellbeing.
sexualadviceassociation.co.uk/
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.
www.counselling-directory.org.uk
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.
www.hypnotherapy-directory.org.uk
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.
MIND
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.
PINNT
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.
Samaritans
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.
www.careforcarers.org.uk/support/counsel-and-care
Disability Rights UK
Information, products and services developed by and for disabled people.
GOV.UK
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.
SEAP
Independent advocacy services to help people resolve issues or concerns about health and social care services, including support during an NHS complaints procedure.
Turn2Us
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
www.moneyadviceservice.org.uk/en/categories/debt-and-borrowing
Caring for someone with PSP or CBD
Carers Rights and the Care Act
Information from the NHS about your rights under the Care Act.
http://www.nhs.uk/carers-rights-care-act-2014
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.
https://www.hospiceuk.org/about-hospice-care/find-a-hospice/
Hospice UK
Website providing information on hospice and palliative care services in the UK.
http://www.hospiceinformation.info/
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.
https://www.gov.uk/power-of-attorney/overview
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.
https://www.arrangingafuneral.co.uk
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.
GriefChat
A free confidential bereavement web-chat support service, available 9am-9pm Monday- Friday.
https://www.professionalhelp.org.uk/grief-chat/
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.
https://www.gov.uk/after-a-death/organisations-you-need-to-contact-and-tell-us-once
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.”