Watch: Inspirational work in raising awareness of sickle cell disease recognised

Dame Elizabeth Nneka Anionwu is committed to championing the fight against sickle cell disease –  a condition that largely affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin

Dame Elizabeth Nneka Anionwu is committed to championing the fight against sickle cell disease –  a condition that largely affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin


Political with a small ‘p’ is how Dame Elizabeth Nneka Anionwu describes herself. Her endless campaigning to raise awareness of sickle cell disease and for healthcare professionals to have a greater understanding of other cultures has brought about changes across the NHS.  

For her inspiring work, she was recently made a fellow of the Queen’s Nursing Institute, an accolade in her long list of accomplishments, including the Royal College of Nursing fellowship and being made a Dame in 2017.

These titles reflect Emeritus Professor Anionwu’s dedication to the NHS after starting as a school nurse assistant at the age of 16 in 1963.

Sickle cell awareness

By the late 1960s, when she was a nursing student, she realised there was a lack of awareness around sickle cell disease – a condition that largely affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin.

In the UK, an estimated one in ten people of African-Caribbean background may be a carrier. If both parents are carriers of sickle cell disease (the most serious type being sickle cell anaemia), there is a 25% chance of each child being born with it.

1 in 10

The estimated number of people from an African-Caribbean background who may carry the sickle cell gene

This led to her championing greater awareness of the condition in the healthcare profession and among patients. In 1979 she helped set up the first nurse-led UK Sickle Cell and Thalassemia Screening and Counselling Centre in Brent, London.

Her commitment to helping those with the condition has led to every baby in England being tested so that support can be given to the child and family as early as possible.

Education deficit

Even with these steps, there are nurses and midwives in the UK who have not received any training on the condition. Despite having retired from nursing in 2007, Professor Anionwu says she is ‘scandalised’ by the fact that she is still meeting nurses in her role as patron of the Sickle Cell Society ‘who have just completed a three-year degree course, in urban areas and elsewhere who have never been taught anything about sickle cell disease, or ever heard it mentioned’.

While Professor Anionwu accepts that the curriculum is ‘crowded’ she highlights that 'in London, sickle cell anaemia was the second most common cause for emergency admission into hospitals’.

Leg ulcers and strokes

Lack of training, for her, is one of the many reasons why awareness still needs to be raised for healthcare professionals across acute and primary care. ‘For example, young children with sickle cell anaemia can get leg ulcers and strokes due to complications. Understandably district nurses might think these two conditions are more associated with the older population. But with sickle cell it’s turned upside down age wise,’ she says.


The chance each child will have sickle cell anaemia if both parents are carriers

But why is sickle cell anaemia not part of the curriculum in some universities? ‘It’s about who is round the table, drawing up the curriculum,’ she says. ‘How aware are they of diverse needs in terms of education for students? If you’ve got people sitting round the table who are not very knowledgeable about it, it is not going to come in to their minds.’

Community nurse lobbying

Professor Anionwu sees nurses working in the community as being in a prime position to lobby for change on making sure it is taught. ‘Professional development can take place in many arenas. Community nurses are the authorities within which they work.

‘It’s not right that they didn’t have anything in their degree or professional course, but if enough community nurses highlight it to their professional association, their trade unions, their local NHS trust, then things can change. You can be political with a small "p", like I was.’

The community nursing workforce is under increasing pressure with fewer people joining the profession and high numbers retiring. To fill the workforce gap many trusts are recruiting nurses from overseas.

Responsibility of trust

Professor Anionwu does not regard the responsibility of training as lying solely with the individual, but with the authority they work in.

‘You don’t know what you don’t know,’ she explains. ‘Trusts have a responsibility to ensure their staff have the information and the resources to enable them to meet the needs of their local population.’

Sickle cell knowledge gap

Although the condition is more common in urban areas, Professor Anionwu believes all nurses should be educated ‘because nurses move around the country and should be equipped to know about sickle cell. It’s not a rare condition and that thought needs to be knocked on the head’, she adds.

Sickle cell disease was once seen as an illness affecting young people who did not survive into old age. As knowledge and care for those living with the illness have advanced, patients with the condition are surviving into their forties and sixties. With milder types of sickle cell they have a longer life expectancy.

Professor Anionwu says it is important not to stereotype an older person with sickle cell as only having health problems relating to this. ‘Conditions can be missed as a result of thinking in boxes,’ she says.

She says that better communication in the community setting would help patients with sickle cell anaemia.

‘Sadly, a couple of years ago there was a child with sickle cell anaemia who died because the GP did not think it was necessary to give him a pneumococcal vaccine. It was a tragedy that the child died. It was a preventable death.


The year the first nurse-led UK Sickle Cell and Thalassemia Screening and Counselling Centre opened in Brent, London

‘When you think of the knowledge that community nurses, health visitors and school nurses have, we could have had this triangulated service and maybe someone could have worked with that GP.’

Specialists under threat

Sickle cell anaemia clinical nurse specialists (CNS) – a position that Professor Anionwu held first in the country ­– are also under threat, she says.

It is a role that can work across primary and secondary care. But she is worried about their survival as cuts are made: ‘It’s a postcode lottery in terms of whether there is a specialist in your area.’

Sickle cell CNSs are not equally distributed around the country, as in those for conditions such as cystic fibrosis, but ‘I want equality of sickle cell CNS workforce distribution,’ she asserts.

Professor Anionwu says the pressures facing the community workforce with the current staffing crisis ‘must be horrendous.’  

Despite the challenges, she says there are opportunities for nurses to develop their careers. But it’s important to not ‘lose sight of your primary objectives and why you became a community nurse’.

Workforce diversity

Dame Elizabeth Nneka Anionwu has criticised the lack of black Asian and ethnic minority (BAME) senior nurses. She stresses that there needs to be greater diversity in the workforce, as well as nurses understanding other cultures to improve quality of care for patients.

‘As community nurses we want to provide the best service that we can for our patients and their families. If you are giving advice aimed at an individual’s eating habits you don’t want to unwittingly alienate families because you’ve been disrespectful.

‘There are many resources out there to help, but as with anything, people need to start hunting around for what free resources are there,’ she says.

It isn’t just Professor Anionwu who is championing this change. Despite last year’s NHS England annual report into race and equality showing signs of improvement for BAME health care workers in senior level positions, the number of BAME workers in leadership roles is still not proportionate to the number of BAME workers at other levels in the NHS.

NHS England chief executive Simon Stevens and England’s chief nursing officer Jane Cummings have both said there is still more to be done in building a more diverse workforce at senior levels. 


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