We have some exciting news to share with the FND community in Lincolnshire. FNDLincs is launching its very first quarterly newsletter, and we’re also rolling out a public questionnaire (in partnership with NHS Lincolnshire ICB) to gather your input on local services. Both of these initiatives are all about keeping you informed and giving you a voice in shaping the support available for Functional Neurological Disorder.
Launching Our First Quarterly Newsletter
Communication is key for a community group like ours. So, we’ve created a brand-new quarterly newsletter to help everyone stay up-to-date and connected. Every three months, our newsletter will land in your inbox (or your post box, if you prefer a printed copy) filled with news and useful information for anyone affected by FND in our region.
What will be inside? Each issue will be a friendly roundup of what’s been happening and what’s coming up. You can expect things like:
- Personal stories and interviews – We’ll feature real stories from people in Lincolnshire living with FND (and their family members). Reading about others’ experiences can be comforting and inspiring. It might be someone sharing how they finally got a diagnosis after years of symptoms, or a carer talking about what they’ve learned along the way. If you have a story you’d like to share in a future newsletter, please let us know! This newsletter is by the community, for the community.
- Practical tips and health advice – Each issue will include a section with helpful tips for managing FND symptoms or improving day-to-day wellbeing. We’re talking things like simple at-home exercises for mobility, relaxation techniques for functional seizures or pain flare-ups, apps or tools that people have found useful, and advice from professionals (in plain language). We know there’s no one-size-fits-all solution, but sharing ideas can give you new options to try.
- Updates on local events and services – Never miss out on what’s happening. We’ll list upcoming FNDLincs meetings (like our support group sessions and any special events), plus any relevant workshops, webinars, or conferences in the area. If a new FND clinic or therapy service becomes available locally, we’ll spread the word. We’ll also keep you posted on our progress as an organisation – for example, how our projects (like the website we’re developing) are coming along.
- Expert corner – In some editions, we plan to have a guest contribution from a medical or therapeutic professional. This might be a neurologist answering a few common questions, a physiotherapist explaining a particular exercise approach, or a psychologist talking about coping strategies for stress. We’ll make sure it’s written in an approachable way. Is there a topic you’d love to see explained by an expert? Tell us, and we’ll try to include it in future issues.
- Community notices – We’ll save space for notices or letters from you. Want to thank someone who’s helped you? Looking to start a little meetup in your town? Have a question you’d like to ask others with FND? This is your corner. You can write to us and we’ll publish a selection of community contributions each issue. It’s a great way for us all to stay connected, even if we can’t meet in person often.
How to get the newsletter
Download the newsletter: FND-Lincs-Newsletter-Autumn
Visit the newsletter archive on our website
We’re making it as easy as possible. The newsletter is free of charge (of course!) and will be available both electronically and in print. If you prefer a paper copy, we’ll have some printouts available at our support group meetings, and we can arrange postage for those who can’t easily collect one in person. We want everyone to have access, so if you have any special requirements (like large-print format), just let us know.
Community Questionnaire with Lincolnshire ICB
In addition to keeping you informed with the newsletter, we’re equally committed to listening to you – the people who live with FND every day (and those who support them). That’s why FNDLincs has teamed up with the Lincolnshire Integrated Care Board (ICB) – basically our local NHS leadership – to launch a public questionnaire about FND services. This is a fantastic opportunity for all of us in the FND community to speak up about our experiences and needs.
What is this questionnaire? It’s a survey designed to gather information on a few key areas:
- Your journey to diagnosis – We want to know how long it took people to get an FND diagnosis in Lincolnshire, what that process was like, and where it might be improved. Did you bounce between different specialists? Were you misdiagnosed at first? Sharing this helps highlight any bottlenecks in the system.
- Support and treatment experiences – The survey asks about what kind of support or treatment you’ve been offered (or not offered). For instance, have you seen an FND specialist or had physiotherapy, and was it helpful? Are you receiving any psychological support? If you’re a carer, have you been offered any training or respite? This will show what services are working well and where there are gaps.
- Understanding and awareness – Another focus is how well you feel FND is understood by the professionals you’ve encountered. We’ve heard from many that sometimes GPs or even hospital staff don’t know much about FND. By collecting these stories, we can make the case for more training and awareness within healthcare.
- What you need moving forward – Perhaps the most important part: we ask what you think would make a difference. This could be anything – maybe a local support clinic, better information at diagnosis, group exercise classes, peer mentors, you name it. There’s also room for general comments. Every idea matters, because it might spark a change.
All the information gathered will directly feed into the development of a Lincolnshire FND Strategy (the draft of which we’ll be sharing, as mentioned, at our December group meeting!). In plain terms, the ICB and we at FNDLincs are going to use your collective feedback to identify priorities and push for improvements. This could mean advocating for new services, or changing how existing services are delivered. The beauty of having the ICB involved is that the decision-makers are listening. We’ve finally got their ear, and they are keen to understand the patient and carer perspective in depth. By filling out the questionnaire, you are speaking directly to those who plan NHS services in our area. It’s a chance to tell them what’s working and what isn’t, so that future patients hopefully have a smoother ride.
How to participate
The questionnaire is available online, so you can fill it out on your computer, tablet, or smartphone. If you need help filling it in (maybe due to symptoms making typing difficult, or you just prefer someone to jot down your answers), you can reach out to the NHS Engagement Team at the ICB (email involveus@nhs.net) or contact us at FNDLincs and we’ll make sure you get assistance. We want everyone’s voice heard, not just those comfortable with forms.
Once the survey closes on 30th November, the ICB will analyze the results in collaboration with us. We plan to share a summary of what we learned in the next newsletter and on our website. And, as mentioned, preliminary findings will be discussed at the Pinchbeck meeting on 11th December, because we believe in transparency – you have the right to know what the collective feedback is showing. In early 2026, as the strategy takes shape, there will likely be further opportunities to comment and refine proposals. This questionnaire is just the start of an ongoing conversation with the community.
Community feedback = Better services. It might sound like a bold claim, but we genuinely believe that by working together with you and the NHS, we can improve how FND is handled in Lincolnshire. Just think: a year or two ago, there was very little said or done about FND in our county. Now, thanks to grassroots efforts and passionate individuals stepping up, we have had a major awareness event, regular support meetings, and the ear of healthcare leaders. This happened because of you – because people started sharing their stories and refusing to be invisible. The questionnaire is another tool to make our voices heard loudly and clearly. So let’s all seize this chance.