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Written on 22nd February 2024 by Richard Money-Kyrle

The Patients Association has called on the government and the NHS to give patients easier, quicker and fully-informed access to diagnostic tests to prevent patient harm and improve patients’ experiences of NHS care. The patient-focussed healthcare charity set out its recommendations for improvements in the diagnostic process in its recently published Patient Experience of Diagnostics Report after hearing the views and recent experiences of 1,177 NHS patients.

The report highlights that NHS patients have a legal right to diagnostic tests and investigations. The NHS Constitution says patients have a right to start treatment within 18 weeks of being referred and should not have to wait more than six weeks for a diagnostic test. As at the end of November 2023, latest figures show that 1.6 million patients were waiting for tests, with 375,200 or around 23% of those patients waiting for one of 15 key diagnostic tests.

The Patients Association emphasise the critical role that diagnostics play in patient care. Without timely access to diagnostics, many patients can’t begin to receive the treatment that they need. They warn that undiagnosed and untreated conditions become worse over time, and heard ‘shocking’ stories of patients who had died or suffered irreparable harm from delayed diagnosis of conditions including cancer and spinal fractures. As worsening patient health is more costly to treat, the charity argues that it is in the interests of patients and the NHS to strive for a more efficient diagnostics system.

What are diagnostic tests?  

Diagnostics is the term used to describe the healthcare tests and investigations that are used to identify and monitor a disease or condition. Diagnostic tests can include blood tests, nasal swabs, screening procedures (such as cervical smear tests, mammograms), invasive procedures ( such as colonoscopy, endoscopy or biopsy),  or radiological imaging (such as x-rays, scans).

NHS England’s Elective Care Recovery Plan recognises that efficient diagnostic testing is critically important to reduce NHS waiting times since the COVID-19 pandemic.  However, the Patients Association survey found that only 11% of patients said they had no issues with getting a test or results, or had not suffered as a result of experiencing these difficulties. Delays in access to diagnostic tests or results can have life-changing consequences for patients, and are a common cause of medical negligence claims when delays or errors in diagnosis lead to death or permanent disability.

The Patients Association’s diagnostics research findings - what do patients want?

The Patients Association’s research highlighted that patients want the NHS to prioritise fully-informed, timely access to diagnostic tests and investigations. 93% of surveyed patients wanted investment in testing capacity to provide faster access to tests and diagnosis, with 91% seeing diagnostics and new technology as a priority.

Easier referrals for diagnostic tests

Nine out of ten (90%) patients felt that it should be easier to be referred for the tests they need. Fewer than half (44%) of patients thought that the system was working well.

Timely access to diagnostic tests and investigations

Delays and waiting for diagnostic tests and results affected surveyed patients’ physical health (36%), long-term recovery (17%), and mental health (34%). Other reported effects of waiting and delays included nervousness about the consequences of delays (61%) and difficulty focussing on work and family whilst waiting (35%).

The ability to access tests in a shorter timeframe was of key importance to the majority of patients. If necessary, 78% said that they would be willing to travel outside their area if that enabled them to access diagnostic testing or screening more quickly. Some patients pointed out that they could not travel owing to issues with mobility or logistics, but only 15% said they would be unwilling to travel for faster access to diagnostic tests.

A majority of patients (78%) felt that testing facilities should be provided closer to patients’ homes to make tests easier to access. More than half (55%) were in favour of making testing facilities available in community locations, such as shopping centres, and 69% wanted to be able to access multiple medical services, including diagnostic tests, in one place.  Expanded opportunities for home-testing were seen by 61% of patients as a way to speed up access to diagnostic testing, and 77% of patients said that they would be happy to test themselves at home. Fewer than half (44%) would be happy to self-test in a clinical setting, such as a GP surgery or a pharmacy, and 4% said they would not be willing to self-test in either environment.

Timely access to diagnostic testing was seen by patients as so important that 60% said that they would consider paying for tests to be done privately if they faced a long wait on the NHS or the test that they needed was not available.  The Patients Association emphasised that patients should not feel they have no choice but to turn to private healthcare simply because they cannot access the services they need through the NHS.

Communication, information and transparency

The Patients Association found that patients want a diagnostics system that includes them in the process and that is honest with them about what their diagnostic journey will look like. The charity reported that this means being kept ‘in the loop’ about how long it will take for them to receive their results, what those results say, and the options that are available to them at each stage. They identified a repeated theme with communication, with patients saying they want more information and transparency before, during, and after their tests have taken place.

More than half of patients (51%) wanted more information about the latest advances in diagnostic testing, 63% wanted more information on the diagnostics tests that were available in their area, and 70% wanted to have clearer information about how to access the tests they needed. Whilst 57% of surveyed patients supported the idea of public awareness campaigns on the importance of testing, some told the Patients Association that advertised NHS services and tests were not readily available in their area. Only 1% of patients surveyed felt that the benefits of faster diagnosis should not be promoted at all.

In relation to their own diagnosis, nearly three quarters (73%) of patients said they wanted to understand why they are being referred for a test, 82% wanted more discussion about the different types of tests they could be referred for. After diagnostic tests had taken place, 88% of patients said they wanted a realistic timeline for when to expect their test results, 87% wanted a better explanation of what those results meant for them and their treatment, and more than two thirds (68%) wanted more clinical support while they waited for their test. The Patients Association identified that patients have an unmet clinical need while they await the results of their tests, emphasising the importance of patients being given the information they need to care for themselves.  Patients told the charity that they wanted information to be made available to them earlier, with lay explanations where necessary.

Tests using AI and new technology and for untreatable conditions

The Patients Association asked patients how they felt about advances in technology which use artificial intelligence (AI) to detect conditions more quickly and provide faster test results. Nearly three-quarters (73%) of patients said that they would be very likely or quite likely to trust the results of AI/new technology testing. Only 16% would be quite unlikely or unlikely to trust the results. More than half (57%) thought the use of new technology such as AI could speed up diagnostic testing and reduce pressure on the NHS.

The majority of patients were against testing for common conditions, such as flu, which in most cases do not cause significant harm. However, 72% said they would take tests to predict the probability of them developing serious conditions which cannot yet be treated, and 89% said that if a test suggested the likelihood of them developing Alzheimer’s disease, they would use that knowledge to make lifestyle changes that might delay the onset of symptoms.

Why patients don’t seek tests

Finally, the patients in the survey were asked why they didn’t seek diagnostic tests or delayed being tested when they experienced symptoms. Only one fifth (20%) had never been in this situation. Other reasons included not having time to visit their GP (20%); not wanting to waste NHS time and resources (29%); and fear of what the results might say (13%). However, missed opportunities for testing were also the result of 9% of patients believing the test was not available on the NHS and 13% of patients whose GP was unwilling to refer them. A third (33%) of patients had tried to get a test but were unable to access an appointment to have a test nearby.

The Patients Association highlighted that these missed opportunities for diagnostic testing reflect national data which show that large numbers of patients experience additional delays because they can’t access the necessary tests to diagnose the cause of their condition, before joining waiting lists for the treatment they need.  

Patients Association recommendations to improve patients’ access to diagnostic testing

The Patients Association’s Patient Experience of Diagnostics Report recommends that the government expands access to community diagnostic hubs by lifting current restrictions limiting where they can be created, and increases the number of tests that hubs can offer to benefit more patients. Building on the positive experiences of home testing during the COVID-19 pandemic, they call for more opportunities for patients to carry out home-testing and self-testing to diagnose and monitor their conditions, where this can be done safely and effectively.

They recommend that NHS England provides increased transparency about waiting times to give patients a clear understanding of how long they will wait to undergo a test and how long it will take to receive the results.  They call for the NHS to keep patients informed before, during, and after their tests, ultimately aiming to notify all patients at each new stage of their diagnosis journey, and to flag when issues have occurred in the process.

The report emphasises that the government and NHS must now act on these recommendations, and calls on all political parties to set out how they intend to increase access to diagnostics for patients ahead of the next general election. 

If you or a family member have suffered severe injury as a result of medical negligence or have been contacted by HSSIB/MNSI or NHS Resolution you can talk to a solicitor, free and confidentially, for advice about how to respond or make a claim by contacting us.