The Pulmonary Fibrosis Trust was among the patient organisations represented at a recent roundtable hosted by the Patients Association, exploring how independent patient voices can be protected and strengthened within the Health Bill.
Following the discussion, the Patients Association has published a report outlining seven principles for future patient representation in health and social care.
Read more about the report and its recommendations below.

The Patients Association calls for stronger protections for independent patient voice in Health Bill

“If you’re heard and nothing happens, what was the point in being involved?”

A new report from the Patients Association sets out seven principles to ensure patients can influence health and care decisions, hold decision-makers to account and see meaningful change. The roundtable and subsequent report were supported by a financial contribution from Boehringer Ingelheim Limited, which had no control or influence over the roundtable or the report’s content.

As the Health Bill reaches the House of Lords, the Patients Association is calling on Peers and decision-makers to strengthen protections for independent patient voice, warning that changes to current arrangements risk weakening patients’ ability to influence health and care services.

In Shaping independent patient voice in the Health Bill: seven principles for what comes next, the charity sets out seven principles that should underpin any future arrangements, including protected independence, meaningful accountability, clear legal powers and fair funding.

The report follows a roundtable held on 8 October, bringing together patients, carers and national, local and community organisations to discuss what independent patient voice needs to achieve in practice.

The discussion comes as the Health Bill progresses through Parliament. At the Bill’s Commons Report Stage on 7 September, the Minister of State for Health committed to reviewing provisions on independent patient voice to ensure the new approach sufficiently empowers and devolves to local populations. The Patients Association says this is an opportunity to ensure that patients retain a meaningful, independent voice in decisions affecting their care.

Roundtable participants were clear that listening to patients is not enough. Their experiences, priorities and concerns must reach the people making decisions, lead to action and result in changes that patients can see.

One participant said: “If you’re heard and nothing happens, what was the point in being involved?”

The report defines independent patient voice as patients, carers and the organisations representing them working in partnership with health and care services to shape decisions and hold decision-makers to account, not just give feedback. They must remain free to gather their own evidence, say what people need and challenge the system.

The seven principles call for independent patient voice to be:

• Independent and free to speak, with the freedom to publish findings without permission from government, the NHS or the organisations being scrutinised.
• Built on partnership and co-production, with patients and charities treated as genuine partners in shaping decisions, involved from start to finish.
• Focused on impact and accountability, with decision-makers under a statutory duty to respond publicly, explain what they will do and demonstrate what has changed.
• Built on equal voices and an equal say, with particular efforts to reach people least likely to be heard and address health inequalities.
• Backed by clear powers and responsibilities, including the legal right to request information and visit services across health and social care.
• Supported by protected, fair funding, allocated according to need, reflecting health inequalities and insulated from the influence of the organisations being scrutinised.
• Built with community organisations, recognising and funding the role of charities and community groups while protecting their independence.

The Patients Association warns that without these safeguards, patient involvement risks becoming a tick-box exercise rather than a meaningful way to improve care. It also stresses that community organisations must be recognised for their role in reaching people whose experiences might otherwise go unheard.

Rachel Power, Chief Executive, the Patients Association said: 

“Patients must have more than an opportunity to share their experiences. They need an independent voice that can challenge the system, reach decision-makers and lead to meaningful change. Patients shouldn’t have to wonder whether speaking up made any difference. As the Health Bill progresses, we have an opportunity to make sure patients’ voices are not just heard but acted on. That means protecting independence, giving patient voice real powers and ensuring decision-makers are accountable for what happens next.”

The report urges Peers and decision-makers to use the passage of the Health Bill through the House of Lords to embed these principles in future arrangements for independent patient voice, ensuring that patients can influence decisions wherever they live and whatever their circumstances.

About the Patients Association
The Patients Association is an independent patient charity campaigning for improvements in health and social care for patients. They believe patients should be actively involved in decisions made about their care and in the design of the health and care system. As an independent charity campaigning for improvements in health and social care, they believe improvements can only be achieved if the system works in partnership with patients. Through their helpline and information services they provide information to thousands of people each year about the health and social care system, enabling them to advocate for themselves.