Read 2023 Sickle Cell Nursing Care Report - The Between Life and Death
An investigation into specialist sickle cell nursing workforce shortages
Following on from the care failures highlighted in our 2021 report, ‘No One’s Listening’, we have taken a deeper look at sickle cell nursing care. Our findings show the need for vastly more resources, training and support in this critical area of care. Our report highlights that not only is no-one listening, but that lives are still being put at risk.
Sickle cell services have faced decades of underfunding andu nder-prioritisation, as
outlined in the No One’s Listening report published by the Sickle Cell Society and the All-Party Parliamentary Group on Sickle Cell and Thalassaemia in 2021. This is reflected in the challenges facing the specialist sickle cell nursing workforce.
the workforce shortage, and what needs to happen to ensure there are sufficient numbers of specialist nurses to deliver a good standard of care to people with sickle cell disorder. This report sets out our findings.
In 2021, the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia, supported by the Sickle Cell Society, conducted an inquiry into sickle cell care in secondary care services.
Among the key findings of the subsequent report, No One’s Listening, was that inadequate staffing levels for sickle cell care are a key factor in the care failings sickle cell patients encounter. The inquiry was told of “chronic under-staffing”, with fears that the problem is on course to get worse without action, due to an ageing staff demographic and too few replacements. The report also detailed evidence that the low number of specialist nurses for sickle cell care means that patients encounter healthcare professionals without the appropriate knowledge of their condition, which exacerbates issues around stigmatisation, lack of joined-up care and care failings. Since taking over as Chair of the APPG on Sickle Cell and Thalassaemia in July 2022, I have repeatedly raised these findings and pressed for action in Parliament, including on the important issue of nursing in the sickle cell workforce. This new report is a welcome development in setting out the workforce challenges in sickle cell services and the steps required to address the problem. The APPG on Sickle Cell and Thalassaemia will continue to advocate for more action from health ministers and healthcare leaders to improve sickle cell care, including on the recommendations contained in this report. I look forward to continuing to work with the inspirational sickle cell community as we take this forward.
Janet Daby MP – Chair, All-Party Parliamentary
Group on Sickle Cell and Thalassaemia
As the country’s first specialist sickle cell nurse, I am proud of the contribution specialist nurses have made – and continue to make – to sickle cell patients’ care. However, thanks to this experience 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.
Dedicated, expert specialist sickle cell nurses play an absolutely crucial role in delivering care to sickle cell patients. Many patients say that it is only sickle cell specialists (both nurses and consultants) who fully understand their condition and provide them with the
care they need.
Dedicated, expert specialist sickle cell nurses play an absolutely crucial role in delivering care to sickle cell patients. Many patients say that it is only sickle cell specialists (both nurses and consultants) who fully understand their condition and provide them with the care they need.
Understanding the scale of the problem is an essential precursor to addressing it. The Sickle Cell Society’s efforts to secure data on the specialist sickle cell nursing workforce for this report was concerning in this regard. For example, at the start of this project, NHS England advised that it does not hold information on the number of specialist sickle cell nurses employed across the country, and a number of the regional lead hospital trusts for sickle cell also did not have records of how many specialist nurses are employed across the region they are responsible for.
However, through the evidence the Sickle Cell Society has gathered for this report, it is clear that there remains an insufficient number of specialist sickle cell nurses to meet the level required to deliver a routinely good standard of care to patients.
Earlier this year, NHS England published its Long Term Workforce Plan, which identified three clear priority areas: training new workers, retaining the existing workforce and making reforms to improve productivity. As this report outlines, action is urgently needed in all three areas to ensure sickle cell patients have access to the specialist nursing care they require.
While there are undoubtedly workforce challenges across all parts of the health system, the evidence in this report suggests that sickle cell is disproportionately impacted as a result of the legacy of under-prioritisation of sickle cell care. There is therefore a particularly strong case for the prioritisation of sickle cell services as part of the implementation of fhe NHS Long Term Workforce Plan.
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.
Dame Elizabeth Anionwu – Patron, Sickle Cell Society
Sickle cell services have faced decades of underfunding and under-prioritisation, as outlined in the No One’s Listening report published by the Sickle Cell Society and the All-Party Parliamentary Group on Sickle Cell and Thalassaemia in 2021. This is reflected in the challenges facing the specialist sickle cell nursing workforce.
This research project set out to capture the wideranging role specialist sickle cell nurses perform, gain a more detailed understanding of the current level of specialist sickle cell nurse staffing, the impact this has on patients and clinicians, the reasons behind the workforce shortage, and what needs to happen to ensure there are sufficient numbers of specialist nurses to deliver a good standard of care to people with sickle cell disorder. This report sets out our findings.
What do specialist sickle cell nurses do and how does it benefit patients?
Specialist sickle cell nurses undertake a wide range of vital roles to support patients. This includes running and assisting with clinics, supporting patients presenting at Emergency Departments in sickle crisis, educating and advising colleagues who are not specialists in sickle cell, and providing advice and guidance on managing the condition for patients and their loved ones, including couples during and after pregnancy
As well as the clinical support most would associate with the role, specialist sickle cell nurses often provide more wide-ranging social support to their patients, often outside of their official duties, from offering advice and support with securing welfare payments to guiding patients as they navigate life developments such as going off to university. This wide-ranging support is hugely beneficial to sickle cell patients, with specialist nurses (and consultants) regularly cited by patients as providing the best care they receive.
Is the specialist sickle cell nursing workforce level sufficient?
The overwhelming consensus among sickle cell healthcare professionals, patients, patient carers/relatives and relevant organisations is that there is an insufficient number of specialist sickle cell nurses to deliver a good standard of care to patients. This is supported by the data, which shows that there is a lower number of specialist sickle cell nurses in many areas of the country than recommended by experts as the level required to enable routine delivery of a good standard of care. There is a high degree of regional variation in the sickle cell nursing workforce level across the country, and particularly in the commissioning and availability of community-based sickle cell nursing support.
Evidence from patients and healthcare professionals suggests that the sickle cell workforce is disproportionately low (even in a context of workforce challenges across the health system). This is supported by data comparisons which show that,
accounting for the respective number of patients, the specialist nursing workforce for sickle cell is lower than for cystic fibrosis, a similar condition. The majority of the experts who contributed to our research felt that the future prospects for the specialist sickle cell nursing workforce look bleak without a change in approach, with particular concern about forthcoming retirements among an ageing workforce without succession plans in place.
Impact of specialist sickle cell nursing workforce shortages
Over the course of our inquiry, we heard that the shortage of specialist sickle cell nurses has a profound impact on patients and their carers, but also on specialist nurses and their clinical colleagues. The shortage of specialist sickle cell nurses means that patients’ care is frequently impacted by encountering nurses who do not have sufficient knowledge of sickle cell to deliver a good standard of care. Specialist sickle cell nurses often do not have the time to engage with patients in the way that they would like, impacting their ability to properly explore problems patients are experiencing. This leads to some patients taking extreme measures, such as delaying or avoiding attending hospital due to their expectation of inadequate care. Specialist nurses and other clinicians are frequently stressed, tired and overworked, leading to low morale and burnout. 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.
Why are there too few specialist sickle cell nurses?
There are a range of factors that mean there are too few specialist sickle cell nurses. There is a lack of funding for specialist sickle cell nursing posts but also too few nurses wanting to specialise in sickle cell. The two problems reinforce each other and ensure that the situation continues.
Funding for specialist sickle cell nursing posts is seen as harder to secure than for other types of nursing positions, often connected to under-prioritisation of sickle cell among healthcare leaders and management.
There is a perception among many nurses choosing a specialism that sickle cell care is an undesirable area to choose to work in. This can be due to nurses justifiably deciding that they do not wish to work in a particularly under-resourced area of healthcare. However, we were also told that sometimes prejudicial attitudes affect perceptions around the desirability of working with sickle cell patients.
Insufficient training in sickle cell and a lack of exposure to sickle cell patients in the early years of nurses’ careers also impact the number of nurses who choose to specialise in sickle cell. Nurse training curriculums still do not contain sufficient (or
sometimes any) training on sickle cell, and there is a lack of opportunity for further training in sickle cell for nurses once they have qualified.
A lack of opportunity for career progression can also serve to deter nurses from specialising in sickle cell. We heard that the limited number of posts available
in sickle cell care compared to other areas mean that there are fewer options for career progression and development, with few senior-level positions available and sickle cell roles falling under a lower band than for equivalent roles in other conditions. The huge range of job titles and role duties can also be confusing to those interested in specialising in sickle cell nursing.