Written by Sarah Tilsed, Head of Partnerships and Involvement.

Our human rights shape our daily lives, just as our health does. The social determinants of health - factors like income, education, and living conditions - profoundly influence not only people's well-being but also the way they experience care. These include living in a deprived area, being from a Black and minority ethnic community, experiencing homelessness or having an intellectual disability.

We’ve published our report on health equity for people with blood disorders and cancers, funded by Bristol Myers Squibb. We found insufficient training of health professionals, a lack of joined-up care, access delays, and closures to services were among the factors identified as contributing to poor patient outcomes and experience. Discrimination and racism are also widely reported, impacting patient safety and overall experiences of care. Sickle cell patient testimonies reported particularly stark experiences of discrimination, prejudice and being disbelieved by health professionals, severely impacting patient safety.

These experiences of discrimination are compounded by systemic failings, such as poor coordination across health and social care services and a lack of effective communication and information sharing, especially on patients’ rights and eligibility for benefits. High cost-of-living and prohibitively high transportation and medication costs are a particular pain point for these patients, further exacerbated by the economic burden of having cancer and/or a blood disorder. In terms of health disparities and equity, the people we spoke to noted barriers that underserved communities may face when accessing services and in their experience of care, in the form of lower quality services, delays in testing and diagnosis, lack of participation in shared decision making, and unequal access to digital technology.

A consistent thread throughout these experiences was a lack of patient partnership and listening to the patient voice, with patients not being viewed as an expert on their own health condition and not being listened to.

Human Rights Day is a chance to acknowledge the importance and relevance of human rights, change perceptions by countering negative stereotypes and misconceptions, and mobilise action to improve health – for ALL.

In the Patients Association general election manifesto, we called on the Government to make addressing health inequalities and ensuring marginalised communities can access services  a central objective of their health and care strategy. It must meet the needs of patients experiencing poverty, co-morbidities, learning disabilities, those from ethnic minorities, or experiencing wider forms of exclusion. In this new report, we make key recommendations to achieve this:

1. Healthcare professionals and policymakers must engage in shared decision making that emphasises listening to patients and employing a patient partnership approach,
2. Implement a single health record to help address lack of coordination and promote more joined-up care,
3. UK government should adopt a multi-agency approach that focuses on interventions both at the national and local/system level and with a “health in all policies” lens,
4. Increase investments in social determinants of health and implement policies and interventions that address social determinants of health,
5. Locate more screening, diagnostic, and treatment services in underserved neighbourhoods,
6. Provide education and training to health and social care staff to better meet the needs of underserved communities, address discrimination and racism, and improve health equity,
7. Ensure that patients have access to information and resources about their rights and eligibility for benefits,
8. To improve access to healthcare, better promote transportation and travel assistance supports and benefits that are available to patients.