06 February 2023

The NHS must redesign the operating model of sickle cell services, according to a new report into the experiences of people living with the disease.

A report commissioned by the independent NHS Race and Health Observatory found a lack of individual care plans in place and no clear definition of what constitutes a care plan.

Although digital care plans 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” was based upon a research project carried out by the consultancy Public Digital.

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.”

The study, carried out between August and December 2022, comprised a landscape review of relevant literature and evidence, drug and clinical trials, and assessed available technologies and services in Accident and Emergency and ambulance care, as well as red cell specialists.

The authors focused on the barriers and enablers to care during a crisis and the impact of individualised pain plans for children. They highlighted the limited technology, dedicated health sites, and web or digital tools that exist to support patients at the point of crisis and for managing the condition at home.

Although valued resources included the Sickle Cell Society website, interviewees for the study said other apps for sickle cell disease were highly variable in quality and subject to poor user interaction, not widely downloaded nor regularly updated.

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 affect whether patients seek medical treatment or follow self-management routines.

Participants also reported feeling deprioritised with their crisis pain undermined, having to advise on current medications while they are in pain, remaining alert to dosages and pain relief against other conditions such as diabetes, as well as frequent delays in receiving analgesia during emergency admissions.

The report’s key findings are that care plans are used inconsistently due to wide variations in format and interpretation by patients and healthcare professionals. It adds that receiving care from sickle cell nurses or specialist care team can positively transform the experience of a patient during a crisis, as most non-specialist clinicians lack knowledge.

It calls for a redesign of the operating model for sickle cell services, which 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.

The report also says a persistent lack of communication and joint collaboration across hospitals and different healthcare settings can lead to an administrative burden for people with sickle cell, and contributes to poor experiences and treatment in crisis.

Many sickle cell patients also point out they have additional needs that are not picked up by healthcare professionals during crisis.

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.”

Chris Fleming, health and care practice lead, Public Digital, added: “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.”

Source: NHS Race and Health Observatory

Link: https://www.nhsrho.org/press-release/digital-care-plans-can-transform-nhs-services-for-sickle-cell-patients/

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