Every time NHS commissioning frameworks change, people living with primary and secondary immunodeficiency are asked to switch the immunoglobulin (IG) therapy product, keeping them well. How that switch happens and whether patients feel informed, involved and supported matters enormously.
Our new report, Behind the Switch: Insights into IG Therapy Changes Across the UK, explores exactly that.
What we did and why
To understand the real-world impact of the 2025 NHS IG commissioning framework on patients and the clinical teams supporting them, we ran surveys between October 2025 and January 2026. In total, 297 patients and 55 healthcare professionals responded.
Alongside the survey data, respondents shared detailed reflections on their experiences. These free-text responses, together with our analysis, are available in full alongside this report, and we encourage readers to explore them. They show the lived reality behind the quantitative data.
What patients told us
The picture that emerged is one of switching happening to people, rather than with them.
- 79% of patients felt they had no choice in the decision to switch
- 49% of patients did not feel meaningfully involved in the decision to switch
- 21% felt the reason for switching was unclear or not explained
- 32% of patients felt that the decision to switch was made without their involvement
- 17% of patients reported the switch was mentioned to them but not discussed in detail
Yet when patients were informed and involved, outcomes were dramatically better.
Satisfaction with how the switch was handled rose from 38% among those not involved to 84% among those who were.
Respondents described several practical and personal impacts on daily life, including:
– extra appointments
– time off work
– travel to the clinic and parking costs
This extra burden was often accompanied by emotional strain, including:
– uncertainty about how a new product might affect them
– anxiety shaped by previous negative experiences of switching
– a reduced sense of control when switching felt forced or non-consensual.
Some patients described repeated switching cycles and an accumulated psychological burden.
A consistent message across negative responses was that prefilled syringes were a critical enabler of independence. Their removal has disproportionately harmed people who travel, work, or have limited dexterity or confidence.
What healthcare professionals (HCPs) told us
Frontline teams are bearing the operational weight of system-level decisions, often without adequate notice, resources, or guidance.
- 24% of HCPs reported minimal or no involvement in switching decisions, despite being responsible for delivery
- 33% of HCPs rated communication from commissioning bodies as poor or absent
- 33% of HCPs felt adequate guidance for managing non-clinical switches does not exist
- 35% of HCPs reported that communication and guidance was mostly clear but not timely
Switching was widely described as time-consuming, resource-intensive and insufficiently understood by policymakers, adding further pressure to services and staff.
Respondents also questioned the claimed cost savings. They argued that the economic case for mandated switches often overlooks hidden or downstream costs. Many called for economic modelling to be reassessed so that it reflects the true costs to the system.
What needs to change
The report makes three clear recommendations:
- Ensure every IG switch is grounded in clear, patient-centred communication.Every switch should be clearly explained, with genuine opportunity for questions and shared decision-making, particularly where switching is system-driven rather than clinically led.
- Align national switching decisions with frontline delivery capacity and realities.National commissioning decisions need to account for the time, resource and clinical capacity required to implement switches safely. There needs to be better engagement and consultation in NHS framework decision-making, with earlier communication and adequate lead-in time being essential.
- IG therapy switching should be a supported transition.Switching IG therapy should be a careful, step-by-step process that keeps patients informed throughout. It's normal for patients to feel anxious and unsure at the start, and that should be acknowledged. Patients should be able to get information and support even after they've started their new treatment, and there should be regular check-ins that reflect how people manage in everyday life.
Read the report
Behind the Switch is available to download now. The full collection of free-text patient and HCP responses is available alongside it, offering an unfiltered account of what IG therapy switching looks and feels like in practice.
Immunodeficiency UK is extremely grateful to patients and healthcare professionals who provided rich insights into their views on IG commissioning, and the impact and challenges they face when switching of IG products is mandated.
Posted June 2026
