Raise awareness of sickle cell disease, nurses told

East London nurse Carey Johnson wants action to ensure that people with sickle cell disease get the best possible care

All nurses need to be aware of the issues around sickle cell disease so that they can ensure that patients get the highest standard of care.

Sickle cell

That was the view of Carey Johnson, a sickle cell and thalassaemia adult specialist nurse at East London NHS Foundation Trust, who raised the issue at the RCN congress in Glasgow today (20 June).

Ms Johnson said most people – including nurses – were unaware that sickle cell disease is the most common serious genetic disorder in England, and that it had devastating effect on people’s lives and life expectancy.

'Drug-seeking behaviour'

Most nurses were also unaware that people with sickle cell disease - a disease of the red blood cells - were more likely to suffer strokes at a young age, they required different pre-and post-operative treatment, and that sickle cell disease affected diverse populations, not just black people, she said. Many were accused of 'drug-seeking behaviour' because their pain was so bad – but healthcare staff didn’t understand.

‘Better care for people with sickle cell disease depends on better awareness and I’m determined to make that happen,’ she said.

Diane Dunn from London said that sickle cell disease caused frequent pain and needed good pain management. ‘Close working from the multi-disciplinary team is crucial for this group of patients,’ she said.

Not just a minority ethnic problem
Lola Kehinde from North East London said a relative of hers with sickle cell disease had been ‘ignored’ in the Emergency Department and had to call an ambulance before being treated seriously. ‘People view it as a black and minority ethnic problem but if affects everybody,’ she said.

Mike Hayward, a deputy director of nursing in London, said it was important to accept that people were in pain and required pain relief, even if they were already receiving treatment. ‘We need to repeat that pain is what the experiencing person says it is,’ he said.

Ms Johnson added that her patients ‘inspired’ her every day at work, and that she was determined to do what she could to raise awareness of sickle cell disease.

Further information:

RCN congress sickle cell debate



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