Tag: Patients Association

New report highlights barriers to health equity for patients living with cancer and/or blood disorders

PATIENTS ASSOCIATION CALLS FOR ACTION

A new report by the Patients Association, funded by Bristol Myers Squibb, sheds light on the stark health inequities faced by patients living with cancer and/or blood disorders, revealing significant disparities driven by social determinants of health, systemic barriers, and discrimination.

The report also offers recommendations to improve access to equitable healthcare.

The report identifies critical issues such as economic and social factors, mistrust in healthcare services, systemic racism, and lack of joined-up care, all of which exacerbate health inequalities for underserved communities.

The report calls for a patient-centred approach that prioritises shared decision-making to ensure cancer and/or blood disorder patients are treated as equal partners in their care. It also calls for a multi-agency approach to tackle health disparities, aligning national and local strategies, such as NHS England’s Core20PLUS5 framework, to enhance access to early cancer diagnosis.

The report finds that cancer and/or blood disorder patients from underserved communities consistently experience worse health outcomes and lower standards of care. Contributing factors include delays in diagnosis, lower uptake of screening programmes, and mistrust of healthcare systems. Barriers such as low health literacy, cultural insensitivity from staff, and systemic discrimination further hinder equitable access to care.

Patients interviewed for this report highlighted several critical issues, including difficulty navigating healthcare systems and insufficient communication about their rights and available benefits. Many patients reported transportation and medication costs causing financial difficulties.

Organisations working with underserved communities reinforced these findings, emphasising the pervasive mistrust in the health among marginalised communities. This mistrust often results from discrimination, such as delayed diagnoses and unequal access to treatment. LGBTQ+ patients and those with sickle cell disease described particularly hostile or dismissive interactions with healthcare providers.

The report also draws attention to the role of social determinants of health, such as inadequate housing, poverty, and living in a deprived neighbourhood. These factors are closely linked to higher rates of cancer and mortality, as well as reduced access to essential healthcare resources.

Tackling these challenges requires urgent action at both a national and local level. The Patients Association calls on policymakers, healthcare professionals, and community organisations to work together to ensure equitable access to care for all.

Reflecting on the report, Rachel Power, Chief Executive of the Patients Association said: ““Equitable healthcare is an urgent necessity. It is deeply concerning that barriers such as systemic discrimination, financial hardship, and mistrust of the health and care system persist, disproportionately affecting underserved communities.

“Only by addressing these disparities can we achieve a health and care system that provides equality and dignity for all. We call on the government and the health and care system to align national and local strategies, address the social determinants of health, and foster trust between patients and healthcare providers.

“We must work together to close these gaps and build a system rooted in fairness, trust, and accessibility.”

For more information, please contact media@patients-association.org.uk

New report shows patients value NHS diagnostic services but face barriers to access

UK patients want better access to early and accurate diagnosis of health problems, according to new survey data from the Patients Association.

Many patients would consider paying to get tests done privately if they faced a long wait for NHS tests.

  • Nine in ten (90%) of UK patients say it should be more straightforward to get the diagnostic tests they need
  • Three in five (60%) said they would be willing to pay to get a test done if they faced a long wait, or the test they needed was not available
  • More than three in five (61%) believed being able to test at home could help speed up diagnosis
  • Patients want to know how to get the tests they need, why they are having them, and when they can expect results.

The survey, undertaken in partnership with Roche Diagnostics UK and Ireland, represents the views of more than 1,000 patients from across the UK, who had received diagnostic support from the NHS in the preceding six months.

Nine out of ten (90%) of the people who completed the survey said it should be easier to obtain access to the diagnostic tests they need. They also wanted:

  • Better understanding of why they were being sent for a test
  • Increased speed and urgency
  • Improved access
  • A greater sense of empowerment when it comes to diagnostic tests, results, and subsequent treatment and care.

Access challenges

The findings demonstrated several challenges experienced by patients in gaining access to diagnostic tests.

  • One-third of respondents (33%) said when they tried to get a test, they found there were no appointments available locally. This reflects national data on the large numbers of patients unable to access diagnostic tests and services, even before consideration is given to any waiting lists for any treatment they may need.
  • Almost four in five (78%) patients felt testing facilities should be provided closer to patients’ homes to make access easier
  • Seven in ten (70%) wanted a clearer understanding of how to access tests. Some respondents highlighted that services are sometimes not available as advertised.

Speed and urgency of access to testing was another significant problem identified by survey. Only one in ten (11%) of respondent said they have never had any issues getting either a test or their results, or faced no consequences if they did.

For those living with long-term conditions, delays and difficulties in accessing diagnosis have had significant consequences. Nearly one in five (17%) respondents said their long-term recovery was set back significantly.

Many more reported consequences for their mental and physical health, and their wider work and family life.

Respondents were also unhappy about a lack of access to, and clear explanation of, test results. Almost nine in ten (88%) patients wanted a realistic timeline for their test results to come through and a similar number (87%) called for a better explanation of what those results meant for them and their treatment.

Patient-created solutions

The survey discovered patients are finding ways around the challenges they faced. For example, when asked whether they would be willing to pay to get a test done privately if they faced a long wait or if the test they needed was not available on the NHS, three in five (60%) of respondents said they would. This included patients who did not consider themselves to be ‘rich’.

The finding that so many patients would consider paying for tests shows the importance they place on getting a timely and accurate diagnosis, even if they had to pay.

Sustainable solutions

The survey’s results show many patients have a clear view on how diagnostic services in the UK could be improved.

Being able to test at home was seen as one way to make services more accessible. Nearly two thirds (61%) of respondents believed expanding opportunities to test at home could help speed up diagnosis.

When asked about specific examples, the numbers were even higher, perhaps building on our collective experience of testing at home during the COVID-19 pandemic. More than three quarters (77%) said they would be happy to test themselves at home.

Investing in diagnostics and new technology was supported by most respondents. For example, more than half (57%) the respondents felt the use of new technology such as artificial intelligence could speed up diagnosis and reduce pressures on the NHS – an important factor since nearly one-third (29%) said they delayed seeking tests to avoid wasting NHS time and resources.

Looking to the future

Almost nine in ten (86%) felt testing and diagnosing conditions more quickly would help reduce the NHS backlog. While patients want to feel more empowered in taking charge of their own health, they are also keen that solutions are sought to support NHS efficiency and sustainability in the longer-term.

Rachel Power, Chief Executive of the Patient Association, says: “Patients value diagnostic services – that’s very clear from the survey. Frustrations about access to tests came over loud and clear.

“Those taking the survey clearly value being partners in their care. And to partner with the professionals sending them for tests, patients need and want clear communication on how to get tests, why they need a test, and when they’ll get results. Healthcare professionals can improve patient-centred care when ordering diagnostic tests by explaining how, why and when.”

Geoff Twist, Managing Director, Roche Diagnostics, UK & Ireland says: “Tests that detect or diagnose disease early, or in some cases prevent it altogether, can play a vital role in the patient journey, and in helping the health system work efficiently.

“This report shows that patients themselves see and understand the importance of diagnostic tests, and that they will proactively seek them out to find the answers they need about their health.

“The message is clear. But to realise this we need a renewed policy focus, setting out how we can speed up getting existing diagnostic tests and innovations to the people who need them. Prioritising diagnostic services can help to relieve some of the pressure on our NHS today and protect it for generations to come.”

Download Patient Experience of Diagnostics Report