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Sickle cell disease awareness and training must be improved, report urges

‘Serious care failings’ found by inquiry, which calls for better education

‘Serious care failings’ found by inquiry, which calls for better education for healthcare staff

Training for nurses on sickle cell disease must be improved to help prevent avoidable deaths, an inquiry report has urged.

The All-Party Parliamentary Group report, No One’s Listening , found low awareness of sickle cell disease among healthcare professionals, and ‘clear examples of inadequate training’ on the condition.

The report revealed some patients were having to educate healthcare professionals on non-haematology wards, such as emergency departments, about sickle cell disease.

Call for improved training on sickle cell disease

Brent Sickle Cell and Thalassaemia Centre service director

‘Serious care failings’ found by inquiry, which calls for better education for healthcare staff

Illustration of sickle cell disease blood cells. Picture: iStock

Training for nurses on sickle cell disease must be improved to help prevent avoidable deaths, an inquiry report has urged.

The All-Party Parliamentary Group report, No One’s Listening, found low awareness of sickle cell disease among healthcare professionals, and ‘clear examples of inadequate training’ on the condition.

The report revealed some patients were having to educate healthcare professionals on non-haematology wards, such as emergency departments, about sickle cell disease.

Call for improved training on sickle cell disease

Brent Sickle Cell and Thalassaemia Centre service director Lola Oni, who has campaigned for greater awareness and better treatment of the disease, welcomed the call for improved training.

‘For an impact to be made, we need to start educating healthcare students and professionals who have not had access to sickle cell training,’ she said.

The report also highlights ‘serious care failings’ including ‘frequent reports of negative attitudes towards sickle cell patients’, with a weight of evidence suggesting such attitudes are ‘often underpinned by racism’.

Sickle cell disease primarily affects people of black African or Caribbean heritage.

Elizabeth Anionwu

Quality of care must be good for people ‘whatever age they are’

Sickle Cell Society (SCS) patron Dame Elizabeth Anionwu, who set up the first nurse-led sickle cell intervention and screening service in England, said she was concerned that support for patients with sickle cell disease was not progressing, despite the introduction of screening for newborn babies and pregnant mothers in England.

She told Nursing Standard: ‘It’s very straightforward. The report is necessary to prevent avoidable deaths.

‘You need to make sure that the quality of care is good for individuals with sickle cell disease, whatever age they are, and that’s what’s still missing.’

Inquiry was sparked by case of avoidable death

The inquiry, carried out in conjunction with the SCS, was launched after a coroner ruled in April 2021 that Evan Smith, who had sickle cell disease and experienced a sickle cell crisis, would not have died if his healthcare professionals had received better training on the illness.

The report outlines several areas for improvement, including the need for:

  • The Nursing and Midwifery Council (NMC), alongside the General Medical Council, to ‘urgently’ commission a review of their approach to sickle cell training.
  • The NMC to have stronger requirements when approving sickle cell training within the university curriculum.
  • Universities to include comprehensive training on sickle cell when training future healthcare professionals.
  • The NMC to ensure training addresses diversity and racial bias awareness.

Nursing regulator demands better sickle cell training in higher education

NMC executive director of professional practice Geraldine Walters said the regulator was ‘deeply concerned’ about the care some patients with sickle cell disease had experienced.

‘We expect universities to develop more detailed curricula and provide learning opportunities that reflect the range of conditions that people can have,’ she added.

In 2019, a Nursing Standard investigation found one in five universities were failing to educate nursing students on sickle cell disease.

Signs and symptoms of an acute sickle cell crisis

An acute sickle cell crisis in a person with sickle cell disease may be indicated by:

  • A sudden onset of pain
  • Infection
  • Anaemia
  • Other symptoms, such as a stroke or priapism (a painful erection)
  • History of a previous crisis (or, rarely, sickle cell disease may be undiagnosed)

Adapted from: What are the complications of sickle cell disease? (NICE)


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