First-hand accounts of patients suffering acute, painful sickle cell episodes reveal poor experience of hospital care outlined in a new report published today.
The independent NHS Race and Health Observatory commissioned consultancy, Public Digital, to undertake a ‘digital discovery’ project last year, to explore the lived experience of people undergoing acute emergency hospital admissions for sickle cell and managing crisis episodes at home.
The study set out to understand the broad availability of digital products and services that currently exist and, crucially, explored what technology is in place for Accident and Emergency clinicians, red-cell specialists, and ambulance care to aid fast support to sufferers on their emergency hospital arrival.
Research found a lack of individual care plans in place, and more broadly no clear definition of what constitutes an actual care plan. Whilst digital care plans already exist in some parts of the NHS, a number of sickle cell patients did not have one, and where they did, most were paper-based, and often dismissed by healthcare professionals.
The Sickle cell digital discovery report: Designing better acute painful sickle cell care – reflects work carried out between August and December 2022, including a landscape review of relevant literature and evidence, drug and clinical trials, existing technologies and services currently available, to support sufferers across both paediatric and adult care.
Areas of particular focus centred on the barriers and enablers to care during a crisis for healthcare professionals and evidence on the impact of individualised pain plans for children. There was also interest in an international clinical trial, using web and smartphone-based applications, to improve pain self-management in young people aged between 12 and 18 years. The results of this trial are yet to be published.
Researchers were struck by the limited amount of technology, dedicated health sites, and web or digital tools that currently exist to support patients at the point of crisis and for managing the condition at home. These included online medical care plans, apps, wearables and dedicated forum pages deemed most effective.
Valued resources cited by interviewees included the Sickle Cell Society website and self-organised communities on the WhatsApp social platform. The majority of other available apps for pain management were aimed at individuals with musculoskeletal conditions; none were specifically aimed at sickle cell disease with only generic pain apps that could be used by people living with the condition.
Where apps for sickle cell disease were identified, these were highly variable in quality and subject to poor user interaction, not widely downloaded nor regularly updated. Public Digital and the Observatory are now advocating personalised, digital care plans to be introduced as a ‘front door’ solution for sickle cell service transformation.
Within focus group sessions and one to one interviews, several participants reported poor hospital experiences that can cause avoidable harm and poor outcomes, and can seriously impact whether patients seek medical treatment and follow home treatment, self-management routines.
Some conclusions from focus groups were concerning; participants reported their frustration at feeling deprioritised, their crisis pain undermined, having to advise on current medications they are on whilst in agony, remaining alert to dosages and pain relief against other conditions like diabetes along with frequent delays in proving adequate timely analgesia during emergency admissions. One participant reflected that taking too much morphine can stop their breathing: “I have to ask, ‘how much is that?’. I have to be conscious; I have to prompt them.”
Another spoke of neglect and fighting for access to the things needed.
“I have to fight to get the attention of the nurse – for six hours, I press the bell 100 times, no-one comes to you. Then they come and say let me give you some paracetamol.” Subsequently, where hospital plans were adequately in place, patients reported feeling comfortable and relieved at having pain relief in place on arrival.
London Student, Mary Adeturinmo, 29, a participant in the study, said:
“I am often at the mercy of healthcare professionals who are unaware of what is required to treat a person living with Sickle Cell.
“My overall care experience in the NHS has varied from excellent to very questionable. Due to my long-term health condition, I have had multiple hospital admissions. I was ecstatic to find Public Digital’s research project, this research is significant as there needs to be a more diverse, in-depth analysis and understanding of the condition and the impact felt by the people living with this condition.”
In addition to specialists in red-cell disorders, a broad range of healthcare professionals participated in collaborative workshops including clinicians – not all expert in sickle cell disorder – but areas comprising A&E and General Practice. Other experts tasked with delivering digital services and technology across the NHS, family, friends and individuals who provide care to sufferers were also invited to give their views.
Amongst a series of recommendations, developed by both sickle cell sufferers and clinicians, Public Digital and the Observatory are now prioritising a call for the replacing of ad-hoc paper care plans, with wider testing for standardised digital care versions and a transformative redesign of sickle cell services.
The Race and Health Observatory will be carrying out further work, in partnership with University Hospitals Bristol and Weston NHS Foundation Trust, to test insight and recommendations arising from the discovery.
Key findings and recommendations:
- Many sickle cell patients have additional needs which are not picked up on by healthcare professionals during crisis, resulting in patients feeling they have to stay alert to monitor the treatment received whilst also in pain.
- Care plans are used inconsistently due to wide variations in format and interpretation by patients and healthcare professionals. They do not currently result in consistent, good care, improve accountability or provide data for care audits and research support. Existing Summary Care Records hold potential for digital inclusion but are not updated frequently enough.
- For sickle cell patients, tracking medication taken can be a laborious, daily task, which is particularly difficult during a painful crisis. Receiving care from a sickle cell nurses or specialist care team can positively transform the experience of a patient during a crisis as most non-specialists, clinicians’ lack knowledge.
- The healthcare system needs to redesign the operating model of sickle cell services. This should include a review of personalised, digital care plans, medication tracking, accessible NHS-wide guidance on managing a sickle cell crisis for clinicians and wearable, monitoring technology.
- A persistent lack of communication and joint collaboration across hospitals and different healthcare settings, often results in an administrative burden for people with sickle cell, and contributes to poor experiences and treatment in crisis. Sickle cell patients would like a different level of input from healthcare professionals managing their condition daily compared to in a crisis situation.
Dr Carl Reynolds, Sickle Cell Medical Adviser at the NHS Race and Health Observatory, said:
“We hope this research leads to rapid changes, and the NHS explores the full potential of introducing effective digital care plans to support patients during a sickle cell crisis, as a priority.
“Now is the time for change and taking a patient-centred, evidence-based approach to the design and implementation of interventions is key for future sickle cell services.”
Dr Habib Naqvi, Chief Executive of the NHS Race and Health Observatory, said:
“Alongside the data, the voices of those with lived experience provide stark feedback on the often substandard care received whilst trying to cope with this chronic disease. Thanks to their input, we have now agreed a series of targeted actions and recommendations for healthcare providers to take forward across the NHS.”
The report also further details user needs and pain points.
Chris Fleming, Health and Care practice lead, Public Digital, said:
“Public Digital is an organisation driven by public purpose and making a difference at scale. It has been an honour to work with the NHS Race and Health Observatory on the sickle cell digital discovery report. The potential for digital technology to improve the care of people who have sickle cell in the NHS is clear, and gives us optimism for designing better experiences for all affected. We want to say a huge thanks to members of the sickle cell community who took the time to input into this research, to collaborate with us and to give a voice to people with sickle cell’s lived experience.”
John James OBE, Chief Executive, Sickle Cell Society, said:
“It is not acceptable that the NHS continues to provide sub-standard, variable care to those in pain during a sickle cell crisis. Patients are not receiving acceptable, reliable levels of care, with one too many reporting poor experiences in accessing timely medications to reduce their crisis episodes. The Sickle Cell Society looks forward to progressing the recommendations from Public Digital and the Race and Health Observatory to solve these historic and debilitating health inequalities which continue to disrupt the lives of people living with sickle cell disorder and their families.”
Despite the frustrations encountered by many, interview participant, Troy Joyner, 59, a quality auditor from Bristol praised treatment received, saying:
“Overall I have had very good experiences when having a crisis. The specialist team in Bristol Haematology unit is second to none in my experience. However I know many other Sickle Cell patients up and down the country who go through hours of suffering before their respective hospital actually administer pain relief. There is room for improvement in treating sickle cell patients by using the technology we have in front of us – especially the NHS linking up good practices.”