WHY VOLUNTEER FOR PSPA?
Volunteering for PSPA can make an amazing difference, not only to people living with PSP & CBD but also to your own life.
By signing up as a PSPA Volunteer, you can help extend the reach of our support across the UK, as well as gain new skills, work as part of a team and make new friends.
We are lucky to have 200 volunteers regularly donating their skills and time to help support others living with PSP & CBD.
People volunteer for us for lots of different reasons. Some because they want to give something back to the charity and their community, some to gain new skills and some to make new friends. Or all of the above!
Our volunteers come from different backgrounds and have a wide range of experiences. They all have one thing in common, the desire to create a better future for everyone affected by PSP & CBD.
PSPA Volunteer Experiences
BEFRIENDING VOLUNTEER – SHEILA BLOICE
Sheila Bloice signed up to become a PSPA Befriending Volunteer in March 2023 and, after completing her training, was linked up with Joyce to offer regular support. Here Sheila shares a little about her role.
Sheila shares:
“I applied to become a PSPA Befriending Volunteer in memory of my husband Mike, who sadly died from PSP three years ago.”
PSP is an exceptionally cruel condition, frequently misdiagnosed, leaving families desperately seeking support.
As a Befriending Volunteer, my goal is to assist families struggling with the challenges and reality of living with PSP & CBD daily.
Supporting Joyce on her PSP journey is immensely rewarding. Joyce is an amazing lady with a wonderful sense of humour. She is great company and still enjoys a good quality of life”.
VOLUNTEER SUPPORT GROUP COORDINATORS – LINDA I AND LINDA M
Linda Iaccarino and Linda Moore have been coordinating the Norwich Support Group for 11 years. Here, they share how they set the group up and what support it offers to people living in and around Norwich.
Linda I: “We do attract group members from 20 miles or more away because we’ve built a great community. Recently, we asked our members what they most enjoy about the group, and it was exactly that – the community feel. Knowing you’re not alone and that you can come along, no questions asked, as people just understand what it is you’re experiencing.”
Linda M: “I am really proud of the group we have built between us, the support we can provide. By volunteering just a few hours of my time each month, it is such a small yet rewarding gift to help people living with PSP & CBD. And hopefully, it helps make their journey a little easier, having us here.”
Linda I: “I agree. Not everyone has a large support network in their family, so it is nice to be able to help. We know things aren’t easy, getting the diagnosis and then the support you need at different points during the illness, so giving up our time is just a small thing we can do to help things along.”
VOLUNTEER SUPPORT GROUP COORDINATORS – LOUISA AND SALLY
Louisa Roberts West and Sally Reynolds have been running the Hampshire Support Group since the summer of 2013. Here, they both share why they started volunteering for PSPA and what they enjoy most about coordinating the monthly group meetings.
Louisa shares: “After my mum died of PSP in 2006, I knew I wanted to volunteer with PSPA. It wasn’t until I left London in 2010, however, that I got in touch with PSPA to find out how I could help. Once I’d found the perfect venue in Hampshire, I got the Support Group up and running by May 2013.
People travel from all over to attend the group, from Berkshire to the West of Somerset, areas of London, the New Forest, Sussex and Bristol. People travel for the friendships which are built in the group. People often socialise and stay in touch in between meetings, which is great to hear.”
Sally adds, “I got involved with the Hampshire group from the second meeting. I attended with my husband, Ted, in June 2013, after he was diagnosed with PSP.
Louisa: “Organising the Hampshire Support Group meetings is incredibly rewarding. Being able to see the difference the shared knowledge, experiences and support makes is amazing.
Sally adds, “Having group members attending, all at different stages of progression, can be tough for some new people joining us for the first time. It can also be extremely comforting to see people are still living their lives, laughing, having fun and getting out and about too.”
HELPLINE VOLUNTEER – MATILDA TAYLOR
Matilda joined our team of Helpline Volunteers after her family received support from PSPA. Here she shares a little about her role.
Matilda said:
“My wonderful mother was diagnosed with PSP in 2015 and very sadly died from the disease in 2018.
PSPA’s Helpline were a support to her and my father at the very beginning and the first people we spoke to who actually had real-life experience of PSP. They listened and signposted. They gave my sister and me the confidence to trust our instincts and, in such tricky circumstances, make significant changes for the better.
It is very difficult to know what to do for the best when you are grieving and watching the person you love the most in the world go downhill, trying to manage day-to-day practical nightmares, juggle all sorts of appointments, and update worried friends and family. Speaking to the Helpline helped our family see a path through and prioritise what was important to us all. Their compassion, experience and understanding of PSP were very comforting and extremely helpful.
That’s why I signed up to volunteer, because it was the Helpline that made a big difference for the better when our family were going through the PSP journey.”
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.
PSPA SUPPORT GROUPS
“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.”
Claire
“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.”
Karen
“For me, the PSPA Support Group meant I knew there were other people out there who were going through this experience too. Both people living with the condition and carers. The group sessions were very valuable. Lots of insight into how the condition might progress, and it was good to meet other people at different stages of the disease.”
Liz
PSPA HELPLINE
“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.”
Elizabeth
“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.”
Suzanne
GET IN TOUCH
We are here to help. If you have a question or need support with any of the above documents, please get in touch.
Tel: 01327 362461
Email: volunteering@pspassociation.org.uk
Interested in becoming a volunteer with PSPA?
Please complete and return our application form, and our volunteering team will get in touch with you very soon.
Frequently Asked Questions
Do I need to have personal experience of PSP or CBD to volunteer?
PSPA volunteers don’t need personal experience of PSP or CBD – just a desire to help. Full training will be available, where appropriate.
Is there a minimum or maximum age?
There is no maximum age for our volunteers, but you do need to be 18+.
How much time will I need to give?
This will vary according to your role. Full details can be found in our volunteer role descriptions.
Will my expenses be paid?
We believe no volunteer should be out-of-pocket because of expenses incurred in carrying out their role, and we will reimburse you for any reasonable expenses. Our volunteer expense claim form can be downloaded from the volunteer resources page.
Will I receive any training?
Yes. All our newly-recruited volunteers will be asked to complete an online induction package (this can be sent by post if requested). Further training may be required, depending on the role. Please contact us for more information.
What support can I expect once I start volunteering?
We positively encourage our volunteers to contact us at any time during the working week if you have any problems, queries, or just want to tell us how well everything is going!
PSPA staff will keep in regular contact with you either by phone or email. You will also be kept up to date with our regular volunteering e-newsletter (this can be sent by post if requested), and our quarterly PSP Matters magazine.
What could I gain from volunteering?
By giving your time, you will gain the satisfaction of knowing you will be helping us to reach out and make a real difference to the lives of people affected by PSP & CBD.
Volunteering is also a great way to learn new skills and develop existing ones, gain valuable work experience and confidence, meet new people and make new friends.
What skills do I need to volunteer?
This will depend on the role you apply for. Often, enthusiasm and a willingness to get involved are the most important skills required. There are some specialist roles that require specific skills, and these are made clear before you apply.
