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Chronic shortage of sickle cell nurses putting patients at risk

Sickle Cell Society report also finds low morale and burnout among staff, with the charity’s patron Dame Elizabeth Anionwu calling for urgent action to increase nurse numbers
Photo of Dame Elizabeth Anionwu, who features in story about shortage of sickle cell nurses

Sickle Cell Society report also finds low morale and burnout among staff, with the charity’s patron Dame Elizabeth Anionwu calling for urgent action to increase nurse numbers

Photo of Dame Elizabeth Anionwu, who features in story about shortage of sickle cell nurses
Dame Elizabeth Anionwu wants more sickle cell nurses, which will ensure a ‘consistently good standard of care’. Picture: John Houlihan

A chronic shortage of sickle cell nurses is putting thousands of patients at risk and leaving them particularly vulnerable to substandard care, a new report has found.

The Sickle Cell Society’s report, The Difference Between Life and Death, reveals a lack of specialist sickle cell nurses across the NHS in England, with existing nurses experiencing extremely low morale and burnout.

The charity also found that patients often delay seeking treatment for painful symptoms as they have low expectations of the medical care they will receive, which leads to their condition deteriorating.

‘Some sickle cell nurses are choosing to leave the profession’

‘Specialist nurses and other clinicians are frequently stressed, tired and overworked, leading to low morale and burnout,’ the report states. ‘Nurses who want to provide the highest possible level of care to their patients feel distressed when they are unable to do so due to capacity constraints.

‘The situation is such that some specialist sickle cell nurses are choosing to leave the profession altogether.’

Researchers were also told of fears that the current ‘chronic under-staffing’ is on course to get worse without action due to an ageing staff demographic and too few replacements.

‘I am all too familiar with the history of under-staffing’

The charity’s patron Dame Elizabeth Anionwu – who was the UK’s first sickle cell nurse – called on NHS England to urgently prioritise the training and retention of specialist sickle cell nurses as it implements the NHS Long Term Workforce Plan.

She said: ‘I am also sadly all too familiar with the history of under-prioritisation of sickle cell patients and understaffing of the services they rely on, which means the level of specialist nursing support for sickle cell patients has never met the level required.

‘I call on all those identified in this report’s recommendations to play their part in ensuring the sickle cell workforce reaches the level required to deliver a consistently good standard of care to patients.’

How sickle cell disorder affects patients

The main symptoms of sickle cell disorder include anaemia and episodes of severe pain, which occurs when red blood cells stick together, causing blockages in the small blood vessels.

It is estimated that a minimum of 17,500 people are living with sickle cell disorder in England, mainly with African-Caribbean heritage.

NHS England says providing the best sickle cell support ‘remains a priority for the NHS’

The charity’s report comes two years after an All-Party Parliamentary Group inquiry found low awareness of sickle cell disease among healthcare staff and ‘clear examples of inadequate training’ on the condition.

A spokesperson for NHS England said: ‘Providing the best treatment and support for people living with sickle cell disease – which can be an extremely debilitating condition – remains a priority for the NHS, and we have recently established ten new centres for sickle cell disease across the country, including dozens of specialist teams.

‘The NHS continues to promote e-learning to support healthcare professionals to improve their knowledge of the condition, how to spot a crisis and the healthcare inequalities facing patients.’


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