Mark your calendars: our next FNDLincs self-help group meeting will be held on Thursday, 11th December at the Pinchbeck Community Hub and Library (48 Knight Street, Pinchbeck, PE11 3RU). We’ll actually be running two sessions that day – one from 2:00–4:00pm and another from 6:00–8:00pm – so you can choose the time that suits you best. Whether you prefer an afternoon gathering or an early evening meet-up, we want to make it as convenient as possible for you to attend. Everyone is welcome, and there’s no need to book in advance. Just drop in to whichever session works for you (or both, if you’re extra keen!).
These self-help group sessions are informal, friendly get-togethers where people affected by Functional Neurological Disorder can connect and support one another. If you’ve never been to one of our meetings before, you’ll find a warm, relaxed atmosphere – more like having a chat in a community living room than a formal meeting. We usually have tea, coffee, and biscuits on hand (what’s a Lincolnshire meet-up without a cuppa, after all!), and plenty of comfortable seating. There’s no pressure to share if you don’t want to; you can simply listen and soak up the supportive vibes. But if you do feel like talking about your experiences, you’ll be among people who truly “get it.”
Who is this group for? In short, anyone with an interest in FND. That includes people living with FND themselves – whether you’re newly diagnosed or have been managing FND for years. It also includes family members and carers who support someone with FND; we know that you have your own challenges and feelings, and you need support too. And we also welcome healthcare professionals or support workers who want to learn more about FND from those with lived experience. Perhaps you’re a local GP, physiotherapist, counselor, or social worker – you’re very welcome to join us. Our group is all about bridging the gaps between patients, carers, and professionals, and fostering a better understanding of FND in our community.
What can you expect from the 11th December session? Apart from friendly conversation and mutual support, this upcoming meeting will have a couple of special features:
Early insights from our FND survey: Recently, FNDLincs (in partnership with the NHS Lincolnshire Integrated Care Board) has been running a county-wide questionnaire about FND services and needs. We’ll be sharing some of the early feedback and findings from this survey at the meeting. This means attendees will get a first look at what our local FND community has been saying about their experiences – what’s working, what’s not, and what they hope will change. It’s a great chance to discuss these insights together. Your thoughts on the survey findings could help shape how we move forward.
Sneak peek at the draft FND Strategy for Lincolnshire: As part of the above effort, a draft strategy is being developed to improve support for FND across Lincolnshire. We are excited to show a first draft of the Lincolnshire FND Strategy at the Pinchbeck meeting. This strategy is basically a plan of action for health and social care services – informed by patient and carer input – to better recognise and manage FND. By coming along, you’ll be among the first to see what ideas are on the table. Even more importantly, you can give us your feedback right there. It’s called a “draft” strategy for a reason: we want the community’s voice to fine-tune it. Together, we are making a real difference, and your contributions at this session can ensure the plans truly reflect what people with FND need.
Of course, as usual, there will be plenty of time for open discussion, questions, and simply getting to know each other. You might hear how others cope with certain symptoms or manage daily life, and you might pick up a new tip or two for yourself. You might discover that someone else has the same weird symptom you thought no one else had – and just that feeling of “Oh, you have this too?!” can be incredibly reassuring. The group is there to share practical advice (for example, exercises that helped, apps that people use to track symptoms, etc.) and to offer moral support on the tougher days. Sometimes just talking to someone who understands can lighten the load.
Why are these get-togethers so important? Living with a poorly understood condition like FND can be isolating. Not everyone in our daily lives knows what FND is – you may have faced blank looks or even skepticism when trying to explain your symptoms. That’s why finding a community of peers is invaluable. At an FNDLincs self-help meeting, nobody will question your reality. You’ll be surrounded by people who believe you and empathise with you. Many of our regular attendees have formed friendships through these meetings. Carers, too, often breathe a sigh of relief when they swap stories with other carers – it reminds you that you’re not alone in trying to navigate doctors’ appointments, physiotherapy sessions, or the emotional rollercoaster that FND can bring to a household. These sessions also sometimes spark ideas that go beyond the group: for instance, if we notice common issues people are raising, FNDLincs can take that forward to our talks with healthcare providers. In that way, your voice in the group can ripple out and create change.
We really encourage you to come along on 11th December if you can. Even if you’re feeling a bit nervous or having a rough day health-wise, you can pop in for as little or as long as you like – there’s no obligation to stay the full two hours. If you just want to sit quietly and listen, that’s absolutely fine. And if you need any adjustments (for example, the venue is wheelchair accessible, and we can dim the lights or find a quieter corner for anyone sensitive to noise or stimuli), please just let us know – we want to make sure everyone is comfortable.
Details recap: The FND self-help group meeting is at Pinchbeck Community Hub & Library on Thursday 11th December. Afternoon session from 2–4pm, and an evening session from 6–8pm. Come to whichever one suits you best. There’s free parking at the venue, and the building is easy to find in the centre of Pinchbeck. The event is completely free of charge. If you have any questions beforehand, feel free to reach out to us (you can contact our team or Cllr. John Smith at Pinchbeck for more info – phone 07507 713817). Otherwise, just show up on the day – we’ll be happy to see you!
We look forward to welcoming both familiar faces and new ones. Let’s get together, share a brew, and support each other. You’re not alone, and our FND community in Lincolnshire is growing stronger every day. See you on 11th December!