Sickle cell disease (SCD) is the most common serious genetic disorder in Britain, affecting around 15,000 adults and children. It can cause episodes of severe pain known as 'crises' which can require hospital treatment and can even cause death without the right care.
Nursing staff will be debating the care of people with SCD at Congress on Monday. The debate was submitted by Carey Johnson, who is a sickle cell and thalassaemia adult specialist nurse at East London NHS Foundation Trust.
Carey said: "Poor care for sickle cell disease doesn't just impact quality of life; it can put the patient's life at risk.
"Health care staff always want to do the very best for their patients, but without the right training and guidance they are unable to do this. That's why nurses are raising this important issue. Better care for people with SCD starts with better awareness and we're determined to make that happen."
Carey was inspired to submit the agenda item by her patients at the Sickle Cell and Thalassaemia Centre in East Ham.
One of Carey's patients is 21-year-old Stefan Taylor. Growing up he would be in hospital on a monthly basis for blood transfusions, and would often be hospitalised for weeks by severe crises.
Stefan said: "Growing up with sickle cell disease was really hard. It affected my personal life because a lot of my friends didn't understand the disease and didn't realise why I often couldn't socialise.
"With more support, things could have been easier. I was getting in trouble at school because of my low attendance and often I was too tired in class to concentrate. Eventually community staff educated my teachers about my condition, but they are so busy and understaffed it took a long time.
"Hospitals make you better physically, but emotionally they make you worse. Some people think you're addicted to painkillers because you ask for them first thing in the morning. It's very distressing, very upsetting. It's hard to keep calm when you're in so much pain.
"The specialist units for SCD are brilliant, but there are so few beds it's first come first served and most people end up in general hospitals. There needs to be more funding."
"Most of what I know about SCD has come from my own research. I've met people with SCD who are a few years younger than me and I've been helping them and giving them advice which has helped them, but there really needs to be more guidance out there for people like us."
Fewer than half of people with SCD say staff in emergency care settings know enough about the condition. Many with the condition often avoid going to hospital for treatment because of stigma and a lack of awareness of the condition.
Janet Davies, RCN Chief Executive & General Secretary, said: "Nurses are clearly saying that there is not enough training for health care staff working in general settings on sickle cell disease. People who are already suffering a great deal of pain need the very best, and most informed care.
"The solution to this is very simple: better training and better awareness both amongst health care staff and the public."