Seek medical advice
- Call your GP
- Call NHS Direct 111 or for Wales 0845 4647
Sickle cell specialist centre (during normal working hours)
- Brent sickle cell and thalassaemia centre on London 02 0845 345
- The Southeast London sickle cell and thalassaemia centre on London 020 304 95993
Always make contact with the sickle cell specialist centre or clinic as they will be able to help you and your GP get you the best help.
Knowledge is key!!!!
It is very important you keep notes of your episodes of pain
- how long they last
- where the pain is
- when it happens
- what you think contributed to the crisis
- what medication you have taken
Know how you feel when you’re well: what helps you stay well?
- how your body works
- how the illness affects you
- what helps avoid crisis (eg: drinking plenty of water, keeping warm, eating well, plenty of rest and avoiding stressful situations)
Getting a good understanding of your health helps you to stay well and limit the chronic pain of crisis.
When arriving at hospital there are certain observations that need to take place. First the hospital should help you by giving IV fluids, oxygen and pain relief. After this they should take a more detailed medical and social history. The information that you can give them about your symptoms and previous problems will help them to treat the sickle cell crisis.
On admission into hospital, it is important to understand that (unless it is a sickle cell specialist hospital) medical staff may not know how to treat you. They will be doing the best that they can. There is a lot of misunderstanding about the severity of the pain of a crisis. It has been reported that many sufferers have been mistaken for drug abusers (because of the scars from years of tranfusions).
Carry your specialist hospital consultant’s number and name and ask medical staff to contact them. Ask to speak to their haematologist, as you have a blood condition.
Always try to attend the hospital with a friend or family member. Keep a note of the name of medical staff you speak to and notes of what is being said for example whether you specifically asked for your Consultant or specialist hospital to be contacted. It can get very busy and it is hard to keep track of who is looking after you when you are suffering chronic pain.
Ask to see the Psychologist at your sickle cell specialist centre
The main worry and fear when you get inadequate care is, ‘Will I die this time?’
A Specialist Psychologist:
- Speaks every day to people with sickle cell
- Has expert knowledge of people’s experiences in hospitals, clinics, work and school, as well as in chronic pain and having to arrive at hospital in an ambulance
- Understands the anxiety and the fear for your life (sometimes being misunderstood as a drug addict because you’re in pain)
- Understands that fear and anxiety about possible death increases stress which contributes to crisis