Brain Donation for ResearchBrain Donation for ResearchPublications for those affected by PSP and CBD

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 that you can be confident the information is accurate and trustworthy.

Your Personal Guide to PSP

 We know that many of you find ‘Your Personal Guide to PSP’ very beneficial, however the guide is now ready for a review and we are aware that it needs updating. Following feedback we are now considering developing two separate guides, one for people with PSP and CBD and one aimed at people in a caring role. We really want to make sure we provide the right information, to the right people and would really appreciate you taking part in our short survey. Your views are really important and helps us produce useful information for the benefit of people we support.

Following your feedback we will be either keeping the guide as one updated guide or producing two separate guides.

The survey will only take 5 mins of your time. If you feel you would like to help please go to https://www.surveymonkey.co.uk/r/ReviewofYourPersonalGuidetoPSP

If you are not able to complete the survey online please contact the helpline on 0300 0110 122.

 

Most of our publications are downloadable however if you would prefer a printed format please contact our Helpline and Information Service

 

 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.

All About Me and Guidance Notes

 

 

Information sheets

 

Advance Decision guidance notes for people living with PSP and 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

Alternative methods of feeding when you have PSP

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

 

If you require this information in printed format, please contact the Helpline & Information Service 

 

Making the most of your appointment

A handy pocket-sized fold-out containing top tips for health and social care appointments

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

 

PSP Matters

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