Condition Solution — Haemoglobinopathy
Sickle Cell Disease Patient Management
Connecting patients and clinical teams to prevent crises before they happen — reducing A&E admissions, improving adherence and reclaiming clinical time.
Understanding the Condition
What is Sickle Cell Disease?
Sickle cell disease (SCD) is the UK's most prevalent inherited blood disorder. It causes red blood cells to form an abnormal, rigid sickle shape — blocking blood flow, starving tissues of oxygen and triggering episodes of severe pain known as vaso-occlusive crises.
Around 17,000 people are living with SCD in the UK, with approximately 300 new babies diagnosed each year. It is a life-long condition disproportionately affecting people of African, Caribbean, Middle Eastern and South Asian heritage.
Beyond the physical toll on patients, SCD imposes a substantial burden on the NHS — driven almost entirely by reactive, crisis-led care. The NHS Race & Health Observatory has highlighted the urgent need for digital health solutions that address the specific challenges faced by SCD patients and their clinical teams.
Read our TechUK guest blog ↗Key Facts — UK
17,000 patients
Living with SCD in the UK — the largest population of any non-endemic country in Europe
~300 new diagnoses per year
In England alone, identified through the national newborn screening programme
3–5 crises per patient, per year
On average — each A&E admission costing the NHS approximately £3,000
Life-long management required
Patients need sustained specialist support, annual review, registry reporting and ongoing monitoring
The Problem
Reactive Care is Failing Patients — and the NHS
SCD care is fragmented. Without the means to engage proactively, preventable crises remain common — draining NHS capacity and causing unnecessary suffering for patients who deserve better.
Financial Drain
£50m
Annual NHS cost driven by SCD crises. At £3,000 per A&E admission and 3–5 crises per patient per year, the financial burden is preventable.
Capacity Gridlock
50,000
A&E and unplanned bed days occupied annually by SCD patients in crisis — capacity that could be unlocked for other critical care needs.
Clinical Inefficiency
50%
Of clinicians' time in SCD clinics is wasted manually compiling data from disparate systems — time that should be spent with patients.
The Opportunity
50–70%
Of crises could be avoided with better medication adherence and empowering clinicians to intervene proactively before a crisis occurs.
Patient experience matters too. The NHS Race & Health Observatory's Left Behind report documented how SCD patients frequently feel dismissed in A&E — their pain undertreated by staff unfamiliar with the condition. A&E presentations are not just a financial problem; they reflect a failure of proactive, coordinated care for patients managing a lifelong condition.
Sources: NHS National Cost Collection data; NHS Race & Health Observatory Left Behind report; Cooperative Study of Sickle Cell Disease (CSSCD); NHS Race & Health Observatory Digital Discovery Report (2023); Systematic Review & Meta-Analysis, Systematic Reviews Journal (2024).
Our Solution
ProtoFlex: Proactive, Connected Sickle Cell Care
ProtoFlex connects patients directly with their clinical teams to drive medication adherence and enable proactive intervention. Patients, carers and clinicians all contribute to a unified platform — tackling problems before they escalate into a crisis and freeing up valuable clinical time.
Unified Data View
Eliminate manual data aggregation. ProtoFlex brings together clinical records, patient-reported outcomes, medication data and pathway status into a single, structured view — so your team always has the full picture without the administrative burden.
Real-Time Visibility
Monitor your entire patient cohort in real time. Configurable thresholds and alert logic surface deteriorating patients before a crisis occurs — enabling your team to intervene proactively rather than reactively.
Adherence Support
Improve medication adherence through direct patient engagement. ProtoFlex Engage delivers targeted reminders, condition-specific information and check-ins — reducing the adherence failures that drive avoidable crises.
Personalised Patient Engagement
Deliver tailored signposting, self-management resources and appointment reminders through a patient portal built for SCD. Patients are empowered to manage their condition and contribute meaningfully to their own care record.
Platform Capabilities
Built on the ProtoFlex Platform
The sickle cell solution is built on the same configurable ProtoFlex platform used across complex and rare disease pathways. Clinical teams retain full control of how the pathway is configured — adapting workflows, alert thresholds and patient-facing content to local protocols without developer intervention.
Explore the platformAlready have an EPR? ProtoFlex can run alongside existing systems as a companion protocol — adding SCD-specific capabilities without disrupting your current infrastructure.
Clinical Input
Built With and For NHS Clinical Teams
ProtoFlex has been shaped by clinical leads, community teams and other key stakeholders from a number of NHS trusts who have generously volunteered their time and insights. Their guidance ensures the workflows, data structures and patient engagement tools reflect real-world clinical practice — not assumptions.
NHS Trust Clinical Leads
Specialist haematology consultants from NHS foundation trusts providing design input on adult SCD pathways, clinical governance and data requirements.
Community Teams
Nurses, community care coordinators and allied health professionals contributing insight into day-to-day patient management and care coordination across settings.
Paediatric & Transition Specialists
Clinical input from paediatric specialists ensuring the platform supports the transition from paediatric to adult SCD care pathways.
"ProtoFlex connects care pathways for complex and rare diseases — enabling seamless coordination across NHS services and putting patients at the centre of their own care."
Marc Warburton, Managing Director — ProtoFlex Software
The Impact
What Better-Connected SCD Care Can Deliver
By enabling real-time visibility and proactive intervention, ProtoFlex aims to save 2–3 crises per patient annually — improving quality of life while generating substantial NHS savings.
A&E Cost Avoidance
£25m
Potential annual NHS saving if 50% of avoidable SCD crises are prevented through proactive digital management.
Clinical Efficiency
50% time saved
Clinicians' time reclaimed from manual data aggregation — freeing specialists to spend more of every clinic session with their patients.
Bed Days Unlocked
25,000
A&E bed days that could be released for other critical care needs by preventing SCD crises before they reach hospital.
Patient Outcomes
50% fewer crises
Fewer crises mean fewer hospitalisations, improved long-term health outcomes and a meaningfully better quality of life for patients.
Get Started
See ProtoFlex in Action for Sickle Cell
Whether you're a haematology lead, service manager or digital health lead, we'd be delighted to show you how ProtoFlex can transform sickle cell care at your trust.
For Clinical Teams
Designed with and for NHS haematology teams. Workflows are configurable to your local protocols — no compromise on clinical governance.
For Service Managers
Clear return on investment through reduced A&E presentations, improved capacity utilisation and measurable improvements in patient outcomes.
For Digital Health Leads
Built for NHS interoperability. ProtoFlex Connect integrates with existing trust systems — no rip-and-replace required.