Our publications are updated on a regular basis and go through a thorough review process so you can be confident the information is accurate and trustworthy.
Most of our publications are downloadable however if you would prefer a printed format please contact our Helpline and Information Service or download our publications list.
Your Personal Guide to PSP
This is a ready reference tool for those living with, or caring for someone with, PSP or CBD. The guide comes in 4 sections allowing you to choose how much information you want to know.
All about me
A leaflet for those receiving professional care at home, in hospital, respite care, nursing home, or a care home. Use it to inform staff of an individual’s needs, preferences likes and dislikes.
An Introduction to PSP & CBD
A leaflet providing practical information for family members, carers and friends about PSP & CBD
Living with PSP: what to expect from your care
A guide to open discussions about your care with health and social care professionals and providers. This may help you access suitable support at the right time.
Living with CBD: what to expect from your care
A guide to open discussions about your care with health and social care professionals and providers. This may help you access suitable support at the right time.
A Carers Guide to PSP & CBD
A guide providing the voices of many carers passing on their wisdom, knowledge
and encouragement. It also details what further assistance is available,
and how to connect with others in similar circumstances.
Information sheets
Advance Decision guidance – information for people living with PSP & CBD
An information sheet to help you plan ahead & record your wishes for future care and treatment.
This factsheet is designed to accompany the Advance Decision form and guidance notes provided for free by Compassion in Dying. For a paper copy of the form, please get in touch with the PSPA Helpline or the form can be downloaded from Compassion in Dying
Tube Feeding
An information sheet to help inform decisions about alternative methods of eating and drinking
Brain Donation for Research
An information sheet providing details of how and where you can donate your brain for research
Clinical trials
An information sheet explaining how and why clinical trials are conducted and the process involved
Cognition and Behaviour
An information sheet explaining the cognitive changes sometimes seen in PSP and CBD
General Benefits and Entitlements
An Information sheet providing details of the general benefits and entitlements to people with PSP, CBD and their carer
NHS Continuing Healthcare Funding
An information sheet to provide you with an understanding of NHS Continuing Healthcare
Useful Organisations
An information sheet to provide you with useful organisations you may wish to make contact with
Research
Understanding the causes to find treatments for people living with PSP & CBD
Fact Card
A credit card sized fact card which includes PSPA contact details and key facts about PSP and CBD.
Fridge Magnet
Our fridge magnet has contact details of our PSPA helpline
Prism Glasses
PSP commonly affects the eyes. Problems with vertical gaze may be helped by using specialist prism glasses that are available free of charge for those living in the UK Please contact the helpline to request a pair. For people living overseas, prism glasses can be purchased from Norville.co.uk
PSPA Matters
You can also download and view the latest issue of our magazine PSPA Matters
