Skip to main content

PSPA Publications

We publish a number of information sheets and guides to help you through your journey with PSP or CBD.

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.

Download 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.

Your personal guide - Download PDF

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.

All about meGuidance Notes

An Introduction to PSP & CBD

A leaflet providing practical information for family members, carers and friends about PSP & CBD

Download PDF

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.

Download PDF

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.

Download PDF

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.

Download PDF

Information sheets

Advance Decision guidance notes 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. The form can be completed online or downloaded from Compassion in Dying

Download PDF

Tube Feeding

An information sheet to help inform decisions about alternative methods of eating and drinking

Download PDF

Brain Donation for Research

An information sheet providing details of how and where you can donate your brain for research

Download PDF

Clinical trials

An information sheet explaining how and why clinical trials are conducted and the process involved

Download PDF

Cognition and Behaviour

An information sheet explaining the cognitive changes sometimes seen in PSP and CBD

Download PDF

General Benefits and Entitlements

An Information sheet providing details of the general benefits and entitlements to people with PSP, CBD and their carer

Download PDF

NHS Continuing Healthcare Funding

An information sheet to provide you with an understanding of NHS Continuing Healthcare

Download PDF

Useful Organisations

An information sheet to provide you with useful organisations you may wish to make contact with

Download PDF


Understanding the causes to find treatments for people living with PSP & CBD

Download PDF

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

PSPA Matters

You can also download and view the latest issue of our magazine PSPA Matters

Online Forum

Shared experiences and support.

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.”

Find out more