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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 that 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 LISTYour 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 – SECTION 1 – DOWNLOAD PDF YOUR PERSONAL GUIDE – SECTION 2 – DOWNLOAD PDF YOUR PERSONAL GUIDE – SECTION 3 – DOWNLOAD PDF YOUR PERSONAL GUIDE – SECTION 4 – DOWNLOAD PDFAll 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 GUIDANCE NOTESGeneric Leaflet – An Introduction to PSP and CBD
A leaflet providing practical information for family members, carers and friends about PSP and CBD
Generic LeafletLiving 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 PDFInformation 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 PDFTube Feeding
An information sheet to help inform decisions about alternative methods of eating and drinking
DOWNLOAD PDFBrain Donation for Research
An information sheet providing details of how and where you can donate your brain for research
DOWNLOAD PDFClinical trials
An information sheet explaining how and why clinical trials are conducted and the process involved
DOWNLOAD PDFCognition and Behaviour
An information sheet explaining the cognitive changes sometimes seen in PSP and CBD
DOWNLOAD PDFGeneral Benefits and Entitlements
An Information sheet providing details of the general benefits and entitlements to people with PSP, CBD and their carer
DOWNLOAD PDFNHS Continuing Healthcare Funding
An information sheet to provide you with an understanding of NHS Continuing Healthcare
DOWNLOAD PDFUseful Organisations
An information sheet to provide you with useful organisations you may wish to make contact with
DOWNLOAD PDFIf 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
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.”