We’ve successfully applied to take part in an upcoming NHS-backed focus group looking at urgent care services across Hampshire and the Isle of Wight, including NHS 111, GP access, pharmacies, and urgent care centres.
Sally Callow will be attending as the representative of Stripy Lightbulb CIC, with one clear aim:
👉 To make sure the lived experience of people with M.E./C.F.S. is heard, understood, and taken seriously.
But she can’t do that properly without you.
Urgent care services are often not designed with M.E./C.F.S. in mind.
Many of us have experienced:
- Being too unwell to navigate complex phone systems
- Struggling with NHS 111 scripts that don’t reflect our condition
- Deterioration after appointments due to post-exertional malaise (PEM)
- Difficulty accessing GPs or being believed when we do
- Pharmacy or urgent care interactions that don’t account for energy limitations
These aren’t small issues, they’re barriers to care.
This focus group is a real opportunity to influence how services are designed in future. If we don’t speak up, those designing services may never understand what needs to change.
We don’t just want to share Sally’s own experience as a person living with M.E./C.F.S. in Hampshire, we want to bring a collective voice.
That means:
- Real stories
- Honest experiences
- What worked (and what didn’t)
- What you wish professionals understood
Even small details can make a big difference.
How you can help
If you live with M.E./C.F.S. (or support someone who does), we’d really value hearing from you:
💬 Your experiences with:
- NHS 111
- GP access
- Pharmacies
- Urgent care / A&E
💡 What would make these services more accessible for you
⚠️ Any situations where care made you worse
✅ Any examples of good practice
You can share as much or as little as you like, a few sentences is absolutely fine.
Why your story matters
For a condition that still lacks:
- Clear biomarkers
- Consistent clinical understanding
- Appropriate service design
…lived experience is critical evidence.
This is how we:
- Challenge assumptions
- Highlight gaps
- Push for services that don’t cause harm
If you’ve ever thought:
“They just don’t understand what this is like”
– this is a chance to help change that.
Please comment on this blog/post, email us via [email protected], via our ‘contact us’ page – or share your experiences in whatever way feels easiest for you.
Deadline – 27th May 2026.
Together, we can make sure that M.E./C.F.S. is not invisible in decisions about urgent care.
Thank you for helping us ensure M.E./C.F.S. is fully represented.
I have severe ME. I am often bed bound. If I try to book an appointment with my GP and they want to see me, I can’t get there. They refuse to do a phone consultation or home visit. Another problem is in A&E. if I have to attend they only have upright chairs, there is nowhere to lay down. Sometimes I have to lay flat as I have dysautonomia and cannot be upright.
Thanks Maddy. I’ll take your comments into the focus group. A&e isn’t considered ‘urgent care’ but the same environmental issues are also issues within urgent care centres so I was going to flag that – I can use your example to make my point. Thank you.