Support Group Coordinators – Louisa and Sally

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.

Only three people turned up to the first meeting which did worry me but PSPA gave me lots of encouragement to keep going and I am glad I did, as the group quickly grew. We now attract up to 40 attendees for each meeting, although in general we have around 20 people regularly attend. These are a mixture of current carers, people living with PSP & CBD and ex carers.

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.

“One thing Ted said about the group was that it is such a safe environment. You are surrounded by people who understand so there is no embarrassment around feeding or drinking and you don’t have to keep explaining what PSP & CBD are, or how they affect you. People just know.

We generally have a discussion topic for each meeting, and we cover all sorts of subjects, some difficult some more light hearted. We also have a range of local organisations who drop in to give talks, and companies who demonstrate equipment such as communication aids or wheelchair accessible vehicles. We’ve also held book swaps, wellness sessions and we’ve organise excursions to local accessible gardens and garden centres.

We’re completely self-funded. We raise money for the room hire, refreshments and activities via donations, raffles, tombola’s and selling books. Louisa adds: “Sally and I make a great team; our personalities complement each other and I think it is really helpful there are two of us at each meeting. Together, and also along with the carers in attendance, we share a wealth of knowledge from our personal experience of PSP & CBD. This means we can give advice, tips and sign post to local services.

In between meetings, we have a really active WhatsApp group so people can ask questions as and when things crop up. During the pandemic, we were initially hesitant about using Zoom as we felt, nothing is the same as that face to face contact. However, after giving it a try, we’ve realised that Zoom helps to open up the meetings to people who would not be able to make it to Hampshire in person, whether due to their mobility or lack of transport.

Sally continues: “We now offer both face to face and Zoom meetings so we can reach out to as many people as possible.

What we do find is, it is easier to deal with emotional conversations in person. The venue in Hampshire has some great facilities, including a kitchen. This provides a great break away space for anyone who needs five minutes to themselves or wants a private conversation.

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.”

Sign up to become a PSPA Support Group Coordinator

Tel: 01327 356137 Email: volunteering@pspassociation.org.uk Website: Support Group Coordinator Application Form