Nurses are calling for more training to help them support people with sickle cell disease, after patients highlighted care failings in emergency departments and hospital wards.
A national survey of more than 700 people with the serious genetic disorder undertaken last year revealed poor levels of awareness of the condition among A&E staff.
“Poor care for sickle cell disease doesn’t just impact quality of life”
Less than half of respondents – 45% – felt emergency staff knew enough about sickle cell disease. Many with the disorder often avoid going to hospital for treatment because of stigma and lack of understanding, the research found.
Nursing staff will be discussing the care of people with sickle cell disease at the Royal College of Nursing’s annual congress in Glasgow tomorrow. Carey Johnson, a sickle cell and thalassaemia adult specialist nurse, submitted the item for debate at the conference.
“Poor care for sickle cell disease doesn’t just impact quality of life; it can put the patient’s life at risk,” she said.
“There are some really good specialist services in pockets around the country, but too many people have to rely on general hospitals and A&E where there is a very poor level of awareness,” she said.
She added that two key things would make a “huge difference” to the thousands of people with the condition – more specialist services and better training for healthcare staff.
“Healthcare staff always want to do the very best for their patients, but without the right training and guidance they are unable to do this,” said Ms Johnson.
Sickle cell disease can cause severe episodes of pain – known as “crises” – that may require hospital treatment
RCN general secretary and chief executive Janet Davies agreed that more training was needed.
“Nurses are clearly saying there is not enough training for healthcare staff working in general settings on sickle cell disease,” she said.
“People who are already suffering a great deal of pain need the very best, and most informed care,” she added.