On the 18th of June 2016, Dominic Howell released an article on BBC News Health about the need for better training for nurses on sickle cell disease. The article talks about the Royal College of Nursing’s description of the ‘poor level of awareness and knowledge in accident and emergency units’.

Sickle cell adult specialist nurse Carey Johnson, who submitted the item to the union’s annual Congress, 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.

“Two things would make a huge difference to the thousands of people with sickle cell disease.

“First, provide more specialist services, and, secondly, provide health care staff with better training about the condition.” (BBC News Health: 2016)

The article continues with the story of Stephen Tailor, 21 and cites findings mentioned at the RCN Congress 2016 from the NIHR CLAHRC NWL, in partnership with the Sickle Cell Society, commissioned Patient Reported Experience Measure for Sickle Cell Disease designed by the Picker Institute.

Read the full article here.


At the RCN Congress 2016 Debate, the discussions focused around the challenges faced by patients including the lack of pain management in hospital, complications such as stroke in children, the common misconceptions of being an addict as well as a ‘BME only’ disease, transition, community, mental and social care. The correct use of NICE guidelines was also brought to question.

Outer Southwest London A&E nurse representative gave his testimony about being proud of being part of a service that has a dedicated sickle cell team of experts and the care they give but admitting to not knowing enough about sickle cell disease until working in London.

“I have witnessed over the years stigmatisation of people with sickle cell. People thinking that these clients are just seeking morphine and that’s why I want this on the national agenda. I wasn’t a very bright student nurse but one of the things that I’ve always remembered that stuck with me is that great quote from McCaffery, 1968; and I think we really need to reflect on this as nurses when dealing with sickle cell patients.

Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does.

And as a deputy director of nursing, one of the saddest things I have to deal with are complaints where patients tell us that we haven’t looked after patient’s pain. As nurses, we are ideally situated and please please please can I urge you to remember McCaffery’s quote and particularly with sickle cell patients, they are in so much pain that we need to give them pain relief within minutes of them arriving in our departments. Thank you.” – Mike Haywood, Outer Southwest London, RCN Congress Debate 2016.


To watch the RCN Congress 2016 Debate on sickle cell disease on the RCN Congress 2016 sickle cell debate page.

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