The blood conditions sickle cell disease and thalassaemia “lack representation” in pre-registration nurse and midwife education, MPs have warned.
Nurse and midwife courses should include a greater focus on sickle cell and thalassaemia or staff “will not be well equipped to nurse these patients when they qualify”, they said in a new report.
“Sickle cell and thalassaemia is not embedded in pre-registration training for nurses and midwives”
The report – titled I’m in Crisis – was launched last week by the All-Party Parliamentary Group for Sickle Cell and Thalassaemia (SCTAPPG).
The group of MPs surveyed 197 students from nine nursing and midwifery schools and faculties, identifying what it called a “lack of representation” of sickle cell and thalassaemia in their education.
They said their survey followed a series of anecdotal reports that highlighted that qualified nurses, midwives and other health professionals lacked knowledge of the two conditions and felt it affected their ability to provide skilled and effective care.
The survey found 71.1% of the student respondents had not had any formal teaching time on sickle cell disease throughout their education. Of those that did, only 16.7% of nurses in the sample had received a taught session of one hour or longer.
For thalassaemia, a larger proportion, 80% of respondents, had not had taught sessions and of those that did, only 10.2% had received a session of an hour or longer.
Meanwhile, 80.7% of those students surveyed declared they had not nursed a sickle cell patient and 92.9% had not nursed someone with thalassaemia.
“The fact that the training is dependent on individual lecturers and schools is unacceptable”
The report warned that without students being exposed to the two conditions during their training, they would not be well equipped to nurse these patients when they qualify.
Also highlighted was a lack of assurance from the nursing students when asked to express how confidently they would deal with patients with either condition.
For example, only 26.4% claimed they would feel confident to look after a patient with sickle cell disease and only 18.8% would for thalassaemia.
However, the report noted that some respondents may have only recently started their training and so a low percentage was not unexpected.
The MPs recommended that approved education institutions should incorporate sickle cell and thalassaemia into all components of nursing and midwifery education, by working alongside professional bodies and charities to create a repository of learning resources.
The report, launched last Tuesday, is a product of an advisory group set up five months ago to formulate strategy.
The group comprised the Sickle Cell and Thalassaemia Association of Nurses, Midwives and Allied Professionals Sickle Cell Society, UK Thalassaemia Society, chief nursing officer black minority ethnic Strategic Advisory Group and patient voices.
The launch event was attended by partners, clinicians, supporters, service users and MPs, including shadow home secretary and former shadow health minister Diane Abbott, who is chair of the SCTAPPG.
All-Party Parliamentary Group for Sickle Cell and Thalassaemia
The recommendations from the report were outlined by Dr Lola Oni, chair of the Nurses Education Advisory Group and service director of Sickle Cell and Thalassaemia Centre Central Middlesex Hospital London.
Michelle Ellis, senior lecturer of child health at City University London, also offered the view of the educational establishment.
John James, chief executive of the Sickle Cell Society, said: “This report confirms what the society has known; that sickle cell and thalassaemia is not embedded in pre-registration training for nurses and midwives.”
“The fact that the training is dependent on individual lecturers and schools is unacceptable,” said Mr James.
“We hope that this report will lead to the inclusion of sickle cell and thalassaemia in the national curriculum and that we will see improved patient care and more trainee nurses in haemoglobinopthies,” he added.
Sickle cell disease and thalassaemia are inherited blood disorders which affect haemoglobin, a part of the blood that carried oxygen around the body.
Those with either disorder face life-long genetic, chronic and potentially fatal circumstances.