We publish a number of information sheets and guides to support you as you come to terms with a new diagnosis and plan ahead.
We work regularly with leading healthcare professionals and researchers to update our publications on a regular basis. This is to ensure you are receiving the most up to date and accurate information possible.
All of our publications can be downloaded below, for you to read and share with family and friends.
If you would prefer a printed copy of any of the publications, please contact our Helpline and Information Service or download and return our publications form.
DETAILED GUIDES ABOUT PSP & CBD
An Introduction to PSP & CBD
A leaflet providing practical information for family members, carers and friends about PSP & CBD
PSPA Support Services
Understand how PSPA can support your and your family by viewing this handy infographic.
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.
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 useful information guide for family members caring for someone living with PSP or CBD.
The guide brings together the voices of people who attend our Carer’s Support Group. They are passing on their wisdom, knowledge and encouragement. The guide also details what further assistance is available,
and how to connect with others in similar circumstances.
INFORMATION SHEETS
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
Cognition and Behaviour
An information sheet explaining the cognitive changes sometimes seen in people living with PSP and CBD
Tube Feeding
An information sheet to help inform decisions about alternative methods of eating and drinking
Research
Understanding the causes to find treatments for people living with PSP & CBD
Clinical trials
An information sheet explaining how and why clinical trials are conducted and the process involved
Advance Decision guidance
An information sheet to help you plan ahead and record your wishes for future care and treatment.
Brain Donation for Research
An information sheet providing details of how and where you can donate your brain for research
Useful Organisations
An information sheet to provide you with useful organisations you may wish to make contact with
QUARTERLY MAGAZINE
PSPA Matters Magazine
We produce a 40-page magazine, four times a year. This brings together PSPA updates, informative articles, personal experiences and the latest research news.
You can also read or listen to the latest edition of our magazine PSPA Matters
USEFUL ITEMS
You can order the below useful items from our Helpline or using the publications order form at the top of this page.
Fact Card
A credit card sized fact card which includes PSPA contact details and key facts about PSP & 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
CONTACT US
If you would like to speak to someone about living with PSP or CBD, please get in touch using the details below.
Telephone: 0300 0110 122
