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The difference volunteers make


Feedback has shown us just how much our volunteers help to improve and extend the range of support we offer to everyone affected by PSP & CBD.

Here you can read just a few of the amazing comments we’ve received from people who have been on the receiving end of our volunteering projects.

You can also read more about PSP & CBD, how it impacts families and how our support helps in our personal experiences section.


“We were so relieved Dr Lindahl referred us to PSPA. We’d have been lost without the support and information we received from other families attending the Coventry and Warwickshire Support Group. None of my grandparents experienced ill health, so we didn’t know what support was available at all. It was so useful having people asking if we’d got this or applied for that.”


“We both found the Support Group meetings enjoyable and helpful. helpful; gaining useful tips from others and also in turn offering support from our experience to others.”

“The Support Group is excellent. It is good to talk to others living with PSP & CBD  and helps me realise I am not alone, as well as  get suggestions from other attendees.”

“We attended an informative PSPA Family and Friends Day in Guildford and later on a local PSPA Support Group was set up on the Isle of Wight.  This group provided invaluable support to individuals and families and David enjoyed going.  The wonderful families we met remain close to our hearts and I still attend the monthly meetings.”


“For me, the PSPA Support Group meant I knew there are other people out there who are going through this experience too.  Both people living with the condition and carers. The group the sessions were very valuable.  Lots of insight into how the condition might progress and it was good to meet other people at different stage of the disease.”



“The PSPA Helpline got in touch via a quarterly phone call and appreciated their advice very much.  I remember the advisor recommended I had a carer’s assessment.

So, I went to my GP and before too long Andy had a carer coming twice weekly to help him with showers, which I had been doing up until then.  I didn’t realise until the carer came, how good it was to have time to myself.

I was so grateful to the Helpline for quietly insisting on this assessment, for I didn’t realise how quickly Andy’s condition would deteriorate.  The fact that there was one carer in place already made it so much easier to increase the care when needed.  The paperwork had already been filled in.”


“The Helpline provides support from genuinely helpful and friendly people at the end of the phone line and access to useful information.”

“Always someone to listen to your PSP experiences and advise plus support you.”

“My son found PSPA in a google search and honestly, I am not sure how I would have coped without the charity’s support.

The Helpline in particular is so supportive. They not only helped in terms of practicalities – pushing me to get support at home. But also, emotionally – there were days I’d just call up and cry down the phone to them. They were so reassuring and they sent all the useful information and publications out, which I have shared with the GP, John’s physio and more recently his care home too.”