Dr Carl Reynolds and Dr Habib Naqvi emphasise the need of improving sickle cell care by developing highly usable digital care plans, eliminating treatment delays and disparities, and ensuring patients receive timely analgesia
The National Institute for Health and Care Excellence guidance states that sickle cell patients presenting with acute pain should be offered analgesia within 30 minutes of presenting to hospital and then reviewed every 30 minutes thereafter until satisfactory pain relief has been achieved. Despite this, sickle cell patients do not reliably receive timely analgesia during acute painful episodes in the NHS. Working with Public Digital, we recently carried out interviews and workshops with sickle cell patients and healthcare professionals to try to understand why this is.
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Patients told us about delays, not having their pain taken seriously by accident and emergency staff, and staff lacking an understanding of their condition. Junior doctors in A&E told us about practical concerns that can lead to under treatment of pain; they do not have experience of giving higher doses of analgesia and appropriately worry that it could be unsafe. We learned about practical shortcomings and barriers to good sickle cell care. Personalised care plans and specialised sickle cell unit care models show promise as potential solutions but have not been widely tested or adopted.
There has been welcome progress for sickle cell care in the NHS in recent months. For example, NICE recommended a treatment, Crizanlizumab, to reduce the frequency of painful exacerbations. The National Institute for Health and Care Research funded a randomised trial to investigate the role of haploidentical transplantation, and NHS England funded blood group genotyping to reduce the chance of alloimunisation (when a blood transfusion recipient’s immune system recognises the transfused blood as foreign). Still, more work is needed to tackle the upstream challenges associated with the condition.
We are particularly interested in the potential of highly usable, accessible and trustworthy digital personalised care plans for acute painful sickle cell episodes. The insight we have obtained clearly indicates that these plans will help to improve access and experience of care. Well-designed digital care plans might also help to improve sickle care by facilitating greater accountability, for example by capturing details of the treating doctor in A&E when the plan is accessed. Like sickle cell care, the digital agenda in the NHS has not always fully delivered for patients. Too often it disappoints patients, healthcare providers, and hospital managers alike. A recent National Audit Office report on digital transformation in the NHS expressed serious reservations about the ability of the NHS to deliver value for money.
Patients and healthcare professionals are at the heart of good clinical care. Whilst we know the needs of both must be served by digital services, if the services are to add value and support clinical care, we are also acutely aware that delivery is not always easy – but it can be achieved. Mainstream approaches to digital delivery that work well outside the NHS can be imported. We must realise the opportunity rather than continuing to swallow the opportunity cost.
As the NHS Race and Health Observatory moves to the delivery phase of the digital sickle cell work, we will ensure a tight focus on the needs of patients, and healthcare professionals, during the experience of acute painful sickle episodes. We will be co-producing and testing, iterating in short cycles, working with openness and transparency, and doing the hard work to co-design a digital care plan that meets the long-standing needs of patients and is also transformative for healthcare professionals. The first of a series of Observatory invitations to tender for digital transformation in sickle cell will be released on 19 June 2023, World Sickle Cell Day.
The work of the NHS Race and Health Observatory is not just about highlighting the scale of the challenge when it comes to racial and ethnic inequalities in healthcare, it is also about providing potential solutions to close disparity gaps. Success here will be measured by the number of active users and, ultimately, by sickle cell patients receiving timely analgesia and being, and feeling, as well looked after as they can during acute painful episodes. Indeed, this work is designed to serve as a reference for the potential of wider adoption and implementation of modern, transformative approaches to digital service delivery in the NHS.
The first of a series of Observatory invitations to tender for digital transformation in sickle cell will be released on 19 June 2023, World Sickle Cell Day.
