You may be aware that the PSP Association are conducting a short survey of people who have PSP or are caring for someone with PSP.
The PSP Association is dedicated to the support of people with Progressive Supranuclear Palsy (PSP) and the related disease Cortico Basal Degeneration (CBD), and those who care for them
The survey has been written to get an initial picture of health and social care services from the perspective of people living with and affected by PSP. We plan to use this information to lobby Government and other key policy makers, to improve services for people with PSP and their carers.
It will also inform the priorities of the PSP Association for the future. This survey paves the way for a much bigger survey next year, which will be conducted using several different ways of gathering information, and over a much longer period, looking at some of the issues raised by this survey in much more detail.
The surveys can be found online from now until 14th October, at the following links:
Survey for people living with PSP: https://www.surveymonkey.com/s/N88R5Z3
Survey for carers / former carers of someone living with PSP: https://www.surveymonkey.com/s/NC3SMDY
We hope that as many people as possible will respond, so please do circulate these links via your networks to people you think might be interested in taking part in the survey, whether living with PSP, caring for, or having recently cared for, someone who has PSP.
Any support you can give to those who may need a helping hand to fill out the survey would also be appreciated.
Equally, if you have any social networks or an online presence where you can advertise these links, we would be very grateful if you would do so. For clarity this survey is focusing on PSP but we do hope to conduct similar research into CBD in the future. We want to improve services and support for people affected by PSP and this is our starting point – please help us to hear as many of their voices as possible.
Best wishes, Debra Chand Director Care & Support The PSP Association