21d • General discussion
❤️ Can you help me create something better for stroke survivors?
Good afternoon, everyone.
I'm hoping some of you might be willing to help me with something that's very close to my heart.
I'm looking for volunteers who would be happy to spend around 30 minutes chatting with me, either on Teams or over the phone, about your experiences following a stroke.
*Why am I asking?
Having worked in stroke medicine for many years, I know how much of a difference good care and support can make. But I also know that, despite the dedication of so many NHS staff, stroke services don't always provide everything that survivors and their families need.
Sometimes that's because of limited resources. Sometimes it's because we, as healthcare professionals, haven't spent enough time really listening to people who've experienced a stroke and understanding what matters most to them.
I want to help change that. But first, I need to listen.
I've already had the chance to chat with one or two of you in detail and several fo you have replied to my prior post asking about what you needed after a stroke. This time I want to use the time for the conversation to go a little deeper.
I'd love to understand more about your experiences, including:
- How did you and your family feel in the days, weeks and months following your stroke?
- What were your biggest worries, questions or frustrations?
- What information or support did you need but struggle to find?
- Where did you turn for answers?
- Looking back, what could have made your journey a little easier?
There's no right or wrong answer, and I'm not looking for anyone to share anything they feel uncomfortable discussing. Your experiences, whatever they may be, are what matter.
*What am I hoping to achieve?
My ambition is to make life after stroke a little less frightening, confusing and overwhelming.
I want future stroke survivors and their families to be able to find clear, trustworthy information, practical advice and meaningful support without having to spend hours searching or feeling that they're facing everything alone.
That might eventually take the form of a book, a website, an educational programme, a clinic or something I haven't even thought of yet.
But I don't want to decide what to create before I've properly understood what people actually need.
I also want to be completely open about something.
Where I can improve care through my NHS roles, I absolutely will, and I'll continue to advocate for better support being available to everyone, regardless of their ability to pay.
I'm also exploring whether I could build something alongside my NHS work that offers additional support beyond what's currently available. That may eventually involve a paid service.
I'll admit that I have mixed feelings about charging for this kind of work. I believe passionately that everyone deserves access to good information and support after a stroke. At the same time, I can see how much more could be done, and I want to find a way to make that happen sustainably and on a larger scale.
And just to reassure everyone: if you're already part of Stroke-Proof, you'll always be welcome here for free. That won't change.
For now, though, I'm not trying to sell anything. I'm simply asking for the opportunity to listen and learn from you.
*Would you be willing to help?
If you'd be happy to have a relaxed, informal conversation with me, please send me a message with a few dates and times that might suit you, and I'll arrange everything else.
You're also very welcome to involve a family member or loved one if you'd prefer. And if talking about your stroke feels too difficult right now, please don't feel any pressure to take part.
I know that sharing these experiences can sometimes bring back difficult memories, and I genuinely appreciate anyone who feels able to do so.
Thank you for being part of this community, and for helping me understand how we can make the journey after stroke better for others.
Your experiences really do matter, and I want them to help shape what comes next.
Thank you ❤️
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❤️ Can you help me create something better for stroke survivors?
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