By Rachel Power

The recent announcement to dissolve NHS England has left many patients wondering what the future holds for their care. While organisational changes may happen at the top, one stark reality persists: some patients remain systematically disadvantaged in a healthcare ecosystem that claims partnership while maintaining deeply entrenched power disparities.

"I certainly want more patient choice, more patient power, more patient control over where they're seen, how they're treated, the nature of their appointments." Wes Streeting, Secretary of State for Health and Social Care, February 2025

What patients really care about

In our response to the announcement, we emphasised that patients care primarily about receiving high-quality care, not which organisation runs the NHS. Hopefully, the upcoming 10-Year Health Plan will turn the Health Secretary's promises into reality, making patient agency and power core principles rather than optional extras. But our evidence suggests that real change requires more than new plans and structures.

The calls our helpline receives reveal the true depth of patient disempowerment and paint a concerning picture of patients struggling to navigate a system that often pushes them to the side. We regularly hear from individuals left in informational darkness, unable to access their own test results or understand their treatment plans. Many callers describe feeling lost in the system. The power imbalance is starkest at critical situations, demonstrated by a distressed caller whose injections had been paused without any prior consultation.

Our recent focus groups with patients across different regions of the UK, further confirm these experiences aren't isolated incidents. In one focus group, participants unanimously reported feeling excluded from decisions about their treatment plans. Similarly, another focus group highlighted how even those who actively seek involvement with organisation and services find themselves relegated to token "patient representative" roles with minimal actual influence. Meanwhile, the postcode lottery of care creates a tiered system where patient agency is determined by geography rather than need.

True patient agency requires more than promises

Patient agency, the ability to meaningfully participate in healthcare decisions, depends on several factors beyond organisational structures.

First, patients need clear, timely information about their condition/s and options. Without this, patients enter every healthcare interaction at a disadvantage.

Second, healthcare must shift from a persistent culture of medical paternalism, where decisions are made by a healthcare professional on the basis that they know best, to partnership. This means creating environments where patients feel empowered to ask questions and have their preferences respected.

Third, the fragmentation of services across regions in the UK creates a system where patient power depends on location, creating differing experiences of healthcare based on postcode rather than need.

Measuring true patient empowerment through direct feedback

Any genuine reform must be measured through metrics that centre patient power, something consistently desired by patients we speak to through our helpline and engagement with patients. How many patients report being meaningfully involved in decisions? Are complaints mechanisms accessible and responsive? Do diverse patient voices influence service design? Are health inequalities narrowing?

Healthcare professionals say that they are working in partnership with patients. However, patients themselves tell a different story when sharing their experiences of care with us. When we asked participants in another recent focus group to rate their sense of control in healthcare interactions on a scale of 1-10, the average score was just 3.6 – a stark indicator of how little power patients experience for themselves.

From tokenism to transformation: what our patient engagement reveals

Addressing the lack of patient power requires more than cosmetic change and is a conclusion consistently drawn from our helpline data and other patient engagement insights. Patient advisory panels that we facilitate repeatedly identify how healthcare professionals need not just training but accountability for shared decision-making practices.

In another focus group, patients emphasised that system leaders must move beyond tokenistic patient involvement to meaningful partnership. As one participant poignantly stated; "Being invited to meetings isn't enough if nobody listens when we speak."

Our helpline advisors have expertise in supporting individuals to understand and assert their rights within an often intimidating system. During the first three months of 2025 alone, we supported several callers in how to effectively advocate for themselves in upcoming medical appointments, sharing practical support that addresses the immediate power imbalance many face.

Beyond reorganisation to relationship

While administrative changes unfold, our focus must remain on the fundamental distribution of power that defines true healthcare reform.

Getting back to the basic principle that founded the NHS, care based on need, means ensuring patients have a genuine voice in their care. The quality of healthcare depends not just on structural efficiency but on whether patients, particularly those most marginalised, have genuine influence over both individual care decisions and system design.

Whatever the NHS looks like organisationally in coming years, the Patients Association will continue challenging power imbalances and advocating for a system where patient voices don't just inform but transform healthcare delivery.