“We do it so no-one else feels alone”
Each one of us has been touched by PSP, through our loved one living with the condition. A couple of us knew each other from another group which sadly folded during the lockdown. After we met Susan and Roger, who were also from Leicester, over Zoom, we decided to start a group to help families living with a diagnosis of PSP or CBD. The meeting started with just the four of us getting together at the local garden centre. But the group has since grown, and we now regularly welcome 24 people to the meetings.
Why do they volunteer?
We have been volunteering for some time and know first-hand from personal experiences how lonely the caring journey can be. We continue volunteering to keep providing essential social support so that no one has to feel alone again.
When and where meetings take place?
Between the four of us, we host the group meetings at the LOROS Hospice which is an accessible venue with useful kitchen facilities. Through Di being a Clinical Volunteer at LOROS Hospice, a relationship has been built between the hospice and the support. Di goes to LOROS in-between their neurology clinics (which take place every 8 to 10 weeks), to make contact with newly diagnosed people and introduce them to the group. This helps to gain more referrals for the group which has helped it to keep growing. We host the group meetings every two months on the first Saturday. We understand how demanding being a carer is and that not everyone can attend every meeting, but members can attend when it works for them.
How to grow your Support Groups?
We have provided some helpful tips on ways that have helped us grow our Support Group:
- Get Someone to Help You – Don’t do everything on your own. It’s important to share the load. We have a team of four volunteers so if someone isn’t able to help at one point, someone else can step in. Please make the Volunteering Coordinator aware if you take on new Helpers, as an application form and DBS check might be needed.
- Setup a WhatsApp group – if possible, setup a WhatsApp group for your members. Also, can help keep everyone updated in between meetings, but it’s also a great way for people to ask questions and seek advice on any topic and get feedback from different sources.
- Don’t make it too formal – everyone who comes is seeking support. We find that making the group as social as possible, encourages our members to keep coming back. We’ve previously discussed gardening and the best uses of turmeric.
- Have planning meetings – Although we keep things casual, we do also plan ahead. We’ll get together to book in speakers or discussion topics. Some topics include specialist holidays for people with neurodegenerative conditions, what people did or do for a living, mobility aids, gardening and more.
- Make it fun – Plan activities such as seated yoga, quizzes, bingo, raffles and Christmas events so members have something to look forward to. It is a great way to keep people involved and raise awareness.
- Consider inviting a speaker – Speakers talk on subjects relating to the conditions as well as on general topics of interest such as local history or theatre productions.
- Bring Some Delicious Treats – Have some fabulous cakes on offer to accompany the teas and coffees. We are lucky to have our Star Baker Edna who is known for her delicious, homemade treats. We’re sure there’s a Star Baker in every group.
