The Health Bill proposes significant changes to how patient and public voice will be heard and acted upon across health and care in England.

The proposals include a new patient experience directorate within the Department of Health and Social Care. Local Healthwatch functions would transfer to integrated care boards and local authorities.

The ambition is encouraging: to bring the experiences of patients and family and friend unpaid carers closer to the people making decisions. For families, this could create a stronger route for their knowledge to influence policy and service improvement.

There is much to welcome. There are also important questions about how this will work in practice.

The value of family and carer experience

Family and friend unpaid carers often see the whole health and care journey. They understand how decisions made by different services connect, where communication breaks down and how changes affect everyday life at home.

This knowledge can help policymakers and service leaders understand the practical impact of decisions and highlight issues that may be missed when services are considered separately.

The Government has said the new directorate will gather and analyse feedback from patients and carers, including people from seldom-heard groups and diverse communities. Used well, this could help identify recurring problems, reduce inequalities and shape services around what matters to people and families.

Success will depend on whether lived experience visibly influences what happens next.

Reaching people whose voices are least heard

Wider representation requires practical and accessible ways for people to take part.

Some people face barriers linked to language, disability, culture, digital exclusion or previous negative experiences of services. Unpaid carers may have little time or flexibility. Some do not identify with the word “carer”, while others may worry that speaking openly could affect the support their family member receives.

Online surveys and open consultations cannot provide the whole picture. Relationships will need to be built with local communities, voluntary organisations and trusted groups that understand how to engage people whose experiences are often overlooked.

There should also be transparency about whose voices have been included, whose may still be missing and how those gaps will be addressed.

Connecting national policy with lived experience

A national patient experience directorate could give lived experience greater visibility within central government. However, there can be a considerable distance between national policymaking and the reality of navigating local services.

Large-scale data can reveal patterns, but understanding why something is happening often depends on listening to people directly.

Clear routes will be needed between the national directorate, local decision-makers, community organisations, patients and family and friend unpaid carers. Involvement should begin while ideas are still being developed, giving people a genuine opportunity to shape policy and improvement work.

Families also need to know how their feedback has been used. Explaining what was heard, what will change and why some suggestions may not be taken forward will help build trust.

Protecting continuity and independence

The proposed transfer of local Healthwatch functions raises questions about continuity, accountability and independence.

Local Healthwatch organisations have developed knowledge, relationships and trust within their communities. These should be protected as responsibilities move to integrated care boards and local authorities.

A clear transition plan will be essential. People need to know where they can share experiences or raise concerns, during the change and after the new arrangements are established.

Independence also matters. People must feel able to share difficult experiences honestly, including concerns about the organisations responsible for services.

Recognising lived experience as expertise

Meaningful involvement requires time, preparation and emotional energy. Patients, service users and family and friend unpaid carers may be asked to revisit difficult experiences, attend meetings, review documents or contribute knowledge developed over many years.

Their contribution should be recognised and rewarded appropriately. This may include payment, expenses, accessible information and practical support.

People should understand their role, how their contribution will be used and what influence they can expect to have. They should be involved as equal partners in policy and improvement work.

An important opportunity

The Health Bill creates an opportunity to strengthen patient and carer voice at national and local levels.

We welcome the intention to give lived experience a greater profile. The next stage requires clarity about representation, relationships, continuity, independence and how people’s contributions will shape decisions.

Its success will depend on the practical structures behind it and on sustained, respectful partnerships with patients, service users, families and communities.