NHS Patient Management Software — Haemoglobinopathy

Sickle Cell Disease Patient Management Software

ProtoFlex gives NHS haematology teams a single, connected system to manage their entire SCD patient cohort — monitoring adherence, bringing patients with score changes to clinical attention, and eliminating the manual data burden that consumes clinical time.

A Complete NHS SCD Patient Management System

ProtoFlex connects patients directly with their clinical teams to support medication adherence and give clinical teams earlier data visibility. Patients, carers and clinicians all contribute to a unified platform — helping clinical teams identify and respond to concerns earlier, and freeing up valuable clinical time.

Unified Patient 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 Cohort Management View

Monitor your entire SCD patient cohort in real time. Configurable threshold notifications bring patients with score changes to the clinical team's attention — so teams have the information they need to respond proactively.

Medication Adherence Support

Improve adherence through direct patient engagement. ProtoFlex Engage delivers targeted reminders, condition-specific information and check-ins — supporting the medication adherence that clinical teams and patients work towards together.

Patient Self-Management Portal

Deliver tailored signposting, self-management resources and appointment reminders through a patient portal built for SCD. Patients are empowered to contribute meaningfully to their own care record and stay connected between clinic visits.

Everything Your SCD Service Needs, in One System

The sickle cell solution is built on the configurable ProtoFlex platform. Clinical teams retain full control of how the pathway is configured — adapting workflows, alert thresholds and patient-facing content to local protocols without developer involvement.

Explore the platform

Already have an EPR? ProtoFlex runs alongside existing systems as a companion protocol — adding SCD-specific capabilities without disrupting your current infrastructure.

Digital pathway & surveillance tracking
Smart eForms for remote patient monitoring
Annual review & National Haemoglobinopathy Registry support
Multi-level clinical dashboards & waiting list management
NHS system integration via ProtoFlex Connect (HL7 FHIR)
Patient portal (ProtoFlex Engage) for self-management & adherence

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.

Designed With People With Lived Experience

Alongside our clinical co-design work, we are running a dedicated patient co-design programme with people who have lived experience of sickle cell disease. Led by Alex Warburton (Product Director), these workshops have directly influenced our product roadmap — adding platform capabilities and shaping the patient portal experience around what people with SCD actually need, not a generic one-size-fits-all model. This includes tools like a pain and crisis diary and context-aware signposting built specifically for sickle cell.

Read Alex Warburton's article on co-design →

"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 Financial and Clinical Case for Proactive SCD Management

Sickle cell disease affects around 17,000 people in the UK — a lifelong condition requiring sustained specialist management, annual registry reporting and continuous patient engagement. Without the right digital tools, care is reactive and fragmented: crises that should be prevented are costing the NHS £50m a year.

Avoidable NHS Spend

£50m

Annual NHS cost driven by SCD crises. At £3,000 per A&E admission and 3–5 crises per patient per year, a substantial proportion is directly addressable through proactive digital management.

Unplanned Bed Days

50,000

A&E and unplanned bed days occupied annually by SCD patients in crisis — capacity that proactive, coordinated SCD management has the potential to unlock.

Clinical Time Lost

50%

Of SCD clinicians' time spent manually compiling data from disparate systems. ProtoFlex's unified dashboard eliminates this — giving that time back to patient care.

Crises Preventable

50–70%

Of crises are avoidable with better medication adherence and earlier clinical intervention. ProtoFlex gives clinical teams the data visibility and patient engagement tools to support those goals.

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. ProtoFlex is designed to address that failure.

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).

What Better-Connected SCD Care Can Deliver

By giving clinical teams better data visibility and supporting proactive patient engagement, ProtoFlex supports the kind of better-connected, coordinated care that published research suggests can reduce reactive, crisis-driven demand.

A&E Cost Avoidance

£25m

Potential annual NHS saving if 50% of avoidable SCD crises were prevented — an estimate of the potential value of proactive clinical management supported by digital tools.

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 potentially associated with avoidable SCD crises — capacity that better-connected, proactive clinical management that ProtoFlex supports could help reduce pressure on.

Research Context

Research indicates: fewer crises

Published research suggests that proactive digital management models can support a reduction in crisis frequency — ProtoFlex provides a configurable information management platform that NHS teams can use to structure and coordinate proactive care programmes.

Frequently Asked Questions

Can ProtoFlex integrate with our existing NHS EPR?

ProtoFlex Connect supports integration with major NHS EPR and results systems via HL7 FHIR and API connections. It can run alongside your current infrastructure as a companion protocol — adding sickle cell-specific capabilities without disrupting your existing systems or requiring a rip-and-replace procurement.

Does ProtoFlex support National Haemoglobinopathy Registry submission?

Yes. ProtoFlex includes built-in support for haemoglobinopathy registry data capture and export, including annual review requirements. Clinical data is structured to align with registry reporting fields, reducing the administrative burden on clinical teams and ensuring audit compliance.

How quickly can ProtoFlex be deployed for a sickle cell service?

ProtoFlex is designed for rapid deployment. Our configurable platform approach means sickle cell pathways can be tailored to your local protocols without bespoke development. We offer a rapid pilot programme to allow NHS trusts to validate the platform in their environment before full procurement commitment.

Is ProtoFlex suitable for both adult and paediatric sickle cell services?

Yes. ProtoFlex supports both adult haematology and paediatric sickle cell pathways, including the transition from paediatric to adult care — a particularly complex period for SCD patients. The platform has been co-designed with clinical input from both paediatric and adult specialist teams.

What NHS data security standards does ProtoFlex meet?

ProtoFlex is built to NHS data security standards, including alignment with the Data Security and Protection Toolkit (DSPT). We work with NHS trust information governance teams as part of our deployment process to ensure local IG and data processing requirements are fully met.

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.

Request a demonstration Explore the platform Read the TechUK article

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 more efficient clinical administration.

For Digital Health Leads

Built for NHS interoperability. ProtoFlex Connect integrates with existing trust systems — no rip-and-replace required.

Contact Us

Let's Talk About Your Service

If you'd like to discuss how ProtoFlex can help your organisation, fill in our contact form and a member of the team will get in touch.

Our Location

C/O Ampa Holdings Llp, Level 19, The Shard, 32 London Bridge Street, London SE1 9SG

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