Written by Orla Fitzsimmons, Policy, Campaigns & Public Affairs Officer.

Since its inception, the Patients Association has existed to campaign for improvements in health and care for patients. Our purpose is to ensure that everybody can access and benefit from the health and care they need to live well, by ensuring that services are designed and delivered through equal partnership with patients.

We therefore welcomed the Government’s approach to public engagement in the design of the 10 Year Health Plan, due to be published in Spring 2025.

In order to respond to the organisational consultation, we wanted to speak directly to patients about their current experiences of health and care, and what patients felt needed to be prioritised in the Government’s plans.

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Working with patients from minoritised communities

How social determinants of health impact patients is one of the most pressing issues facing the NHS today. This includes external factors that contribute to a patient’s health and wellbeing, like their income level, if they have access to safe housing, and whether they come from a minoritised community, like being Black or LGBTQ+.

In an upcoming report, based on conversations with patients living with blood disorders and cancers, we found that social determinants of health overwhelmingly impact their experiences of health and care. This impact is seen throughout their experiences, from access to services in rural areas, racist and/or transphobic interactions with healthcare professionals, and inability to travel to and from appointments because of financial constraints.

Patients that are affected by social determinants of health are typically underrepresented in health and care research. We therefore felt it important to ensure that they were able to be involved in our engagement, to ensure that our response truly reflected the voice of all patients.

To make our engagement as inclusive and accessible as possible, we worked directly with a diverse group of patients to co-design our survey, based on the questions in the organisational consultation. Some of these patients also acted as community advocates, and worked within their own circles to support patients who were neurodiverse, under 16 years of age, racially minoritised, LGBTQ+ or digitally excluded to fill out the survey.

Our findings

We found that the respondents to our survey were generally in favour of the three shifts proposed by the Government – shifting from hospitals to the community; from analogue to digital; and from sickness to prevention.

However, patients also shared concerns and challenges that may arise from implementing some of these shifts. This included the current quality of and access to community care services, the difficulties faced in the use of data in joining up care in NHS services, and the lack of accessible information to help prevent illness and encourage patients to live healthier lives. Patients shared that the system needs to work to better involve patients in the design and delivery of NHS services, tackle health inequalities and providing more tailored information to prepare them while waiting for appointments.

“It [moving care from hospitals to communities] is a good idea in theory. It does, however, need to be properly resourced.”

“It [shifting from analogue to digital] can only be achieved with adequate funding, training for staff, decent wages and a training pathway for care staff.”

“One significant problem regarding data systems is that different providers within the NHS use different systems that don't all seem to share the same data.”

A key theme that arose through all three of the questions on the proposed shifts was the capacity and resource needed to make these shifts happen. As highlighted through the quotes from patients, efforts need to be made to ensure that when these shifts happen, there needs to be a focus on adequate support for staff, an emphasis on joining up care between NHS services, and ensuring that services are properly resourced. These priorities closely aligned with our findings from previous work.

The importance of the patient voice

Patients are experts by experience, and understand their condition/s, and what they need from a health and care system better than anyone else.

“As well as examples where patients and their carers have not felt listened to [in] their care, there is potential for people to be more involved in designing and developing how services work.” - Lord Ara Darzi, 2024

The Darzi report, published earlier this year, argues that patients need to be further included in the design and delivery of NHS services. By using public engagement as the foundation of the writing of the 10 Year Health Plan, the Government has shown a clear and welcome intention to ensure that patient voice is included in health policy moving forward. However, it is crucial that this engagement continues throughout this Government’s tenure and beyond, and patients continue to be included in both national and local conversations about the delivery of care.

>Download our report