Black History Month 2026 · Croydon Sickle Cell and Thalassaemia Support Group
Your workshop page with Dr Lewis Thomas, 24th October 2026. Everything from today in one place. Feel free to take notes or screenshots.
This page is general education, not personal medical advice. Always follow the plan your own sickle cell team has given you.
Know your normal
Think about these on your own, or chat them through with someone you trust.
1
What tends to trigger me or my child?
2
How have my triggers changed over time?
3
What are my earliest warning signs?
4
What usually helps?
5
What tends to make things worse?
6
What's normal during my usual crisis?
7
What would feel unusual or worrying?
A simple way to decide
Work through these in order, and keep checking: things can change.
1
Is there a red flag?
Yes: urgent help
Get assessed straight away.
2
Is it behaving like your usual crisis, and is your usual plan helping?
Yes: manage at home
Keep checking. Things can change.
3
It isn't settling, it's getting worse, or it feels different from usual
Get medical advice
Your sickle cell team, GP or NHS 111.
Reasons to seek help straight away
⚠ A temperature of 38°C or above
⚠ Chest pain or difficulty breathing
⚠ Sudden weakness, face drooping or slurred speech
⚠ Severe headache, confusion or a fit
⚠ Pain not controlled by usual home medicines
⚠ A child who is suddenly pale, floppy or has a swollen tummy
⚠ A painful erection lasting 2 hours or more
⚠ Being very unwell, or feeling very different from usual
Call 999 for stroke signs, severe breathing difficulty, a fit, or someone who is very hard to wake.
Your five-point pain brief
Clear, quick and hard to ignore. Just enough for staff to know how to help.
Typical
“My normal is…”
Example: “My pain is usually about 2 out of 10, and I manage it at home.”
Today
“What's different today is…”
Example: “Today it's 9 out of 10. It feels like being hit with a baseball bat across my back and legs.”
Tried
“I've already tried…”
Example: “Before coming in, I took paracetamol, ibuprofen and codeine. They haven't touched it.”
Threat
“What I'm worried about is…”
Example: “The last time my pain wasn't controlled quickly, I developed acute chest syndrome.”
Treatment
“What I need help with is…”
Example: “The dose in my care plan has worked for me safely before, and my haematology team can confirm it. Can we start with that, and reassess in 30 minutes?”
Write your own Five Ts down before you need them, on your phone or a card, and share them with whoever might speak up for you.
Know what should happen
Emergency
A sickle cell pain crisis should be managed as an emergency.
30 minutes
Pain relief should be offered within 30 minutes of arriving.
Strong opioid
Offered for severe pain, or moderate pain if you've already taken painkillers.
Every 30 min
Pain reassessed until it's under control, then at least every 4 hours.
Care plan
Staff should check your care plan and what you've already taken.
The expert
You, or your carer, should be treated as the expert on your condition.
Source: NICE guideline CG143, Sickle cell disease: managing acute painful episodes in hospital. Hospitals follow local protocols built on this guidance, and individual care plans may differ. Read the guidance on the NICE website
For yourself, or someone you support
Ask questions when something isn't clear
Tell staff what's different from your normal
Mention your care plan, if you have one
Ask to be reassessed if things are getting worse
Escalate calmly, for example to the nurse in charge or a senior doctor
Martha's Rule: in participating NHS hospitals, you can ask for an urgent review if you're worried someone is getting worse
Speaking up is your right. Gaps in care are never your fault.