Blog Article: James Titcombe: Speaking up for Patient Safety across the United Kingdom

By Olivia Lounsbury, Clinical Intern, Patient Safety Movement Foundation

Medical errors are the third leading cause of death in the United States (Makary and Daniel, 2016).  Putting patients first — listening to their own and their families’ concerns — can help eliminate medical errors altogether.  A patient-centric approach encourages patients to communicate their ‘gut feelings’ when something seems wrong, thereby working to end the pervasive and dangerous culture of silence and fear in hospitals.

Breaking through a Culture of Silence and Fear

Sometimes, even when patients have a gut feeling that something is wrong, they may be afraid to speak up.  Patients may fear being wrong or angering their physicians, or may even be convinced that it wouldn’t make sense for them, as the patient, to know anything about care.  However, in cases of preventable death and harm in hospitals, clinicians often regret not communicating with the patient and their family members about what may have seemed ‘off.’

James Titcombe’s story about his newborn baby, Joshua, epitomizes the constant need for sufficient communication to avoid disastrous consequences.

Joshua’s Story

In 2008, James Titcombe and his wife were expecting a baby boy.  His wife experienced a prelabor rupture of membranes which made both her and her baby more susceptible to life-threatening infections.  James’s wife delivered the baby 36 hours later at Furness General Hospital, but ended up with an infection. When she asked the doctor for antibiotics for both herself and her new baby, Joshua, she received antibiotics, but her newborn did not.  Instead, in response to James’ and his wife’s concerns, the nurse simply reassured the Titcombes that their new baby would be fine. In other words, the concerns James had regarding Joshua’s care were not acted on by the hospital staff.

Sure enough, Joshua was not fine. Because he did not get the antibiotics he needed, he rapidly plummeted into septic shock.  Sepsis is the body’s significant and often overpowering immune response to infection. If caught early, this intense immune reaction can be treated, but if it goes untreated, as in Joshua’s case, sepsis is fatal.  Sadly, as James later learned, Joshua’s death was another casualty of a notorious coverup at Furness General Hospital, part of the Morecambe Bay NHS Trust. This scandal was only uncovered after James spoke out about what had happened.

When Speaking Out Can Save Lives

James, together with other families who had lost babies at the same hospital, launched a national campaign to ensure that the safety of maternity services at the trust was properly investigated.  James contacted Jeremy Hunt, who served as Secretary of State for Health and is now Chairman of the Health and Social Care Select Committee for England. Hunt, after talking to James and meeting other families, decided to launch a national investigation studying what was problematic with the quality of maternity care at the hospital where Joshua was born.  The investigation shed light on one of the NHS’s largest cover ups, and revealed that 11 babies and one mother had died at the same unit as Joshua due to a ‘lethal mix’ of patient safety failures. 

These days, after casting light on the problems at Furness General Hospital, the UK NHS boasts one of the most ambitious maternity safety improvement programmes in the world, with the mission to reduce avoidable harm in maternity services across the NHS by 50% by 2025.  In 2015, Titcombe was awarded the Order of the British Empire (OBE) for his major role in health care reform in the UK.

Today, James goes all over the world talking to people about his story to raise awareness about preventable hospital deaths and works for the charity Baby Lifeline to support safer maternity care in the UK and beyond – see www.babylifeline.org.uk.

A Culture of Safety

While it can be difficult to acknowledge an error, it can be even more devastating to realize that proper procedures were not in place to prevent a hospital death.

As James learned more about the culture of the maternity unit where Joshua was born, he discovered that prior to Joshua’s death, other serious adverse events occurred that, had they been properly reported and investigated, could have resulted in changes in practice and  safer care for Joshua and other babies. In fact, when the report investigating the problems at Furness General Hospital was published in 2015, it revealed that the first avoidable baby death occurred at the unit in 2004. However, because the case was not investigated adequately, poor practice and unsafe care in the unit continued unchallenged.

The vast majority of times when something goes wrong in healthcare, the causal factors are multifactorial and blaming an individual only masks underlying system and process issues. Therefore, it’s crucial that a culture that supports openness and learning exists in healthcare. The investigation into events at Furness General Hospital revealed a culture of blame, where staff covered up mistakes and therefore serious problems remained hidden, unchallenged and unaddressed.  

Hospital Protocols Work When there is Good Communication

To create a culture of safety, we must put patients first — and that means listening to them. 80% of medical errors are caused by communication breakdowns (Joint Commission on Accreditation of Healthcare Organizations, 2012) and this statistic will remain unchanged without being attuned to patient concerns.

Patient opinions may be discounted as healthcare providers suspect they may be operating on enhanced anxiety, making them less able to communicate their needs effectively in a hospital setting.  Additionally, clinicians may keep quiet out of self-preservation and fear of backlash.  

A culture of safety where people are not afraid to speak up — patients and healthcare providers alike — will lead to better health outcomes. The protocols used in the clinic, while designed for maximum safety, are only useful if followed — which means, of course, that they must be integrated with good communication practices.

Keep in mind that patient safety doesn’t just involve patients, but hospital staff and family members too.  As Joshua’s tragic story demonstrates, if someone makes a mistake and it goes unreported, the results will often be fatal.

Preventable harm and death can be avoided with the establishment of safe, supportive systems for communication and reliance on established protocols.  This approach is used in contexts which require a high level of safety, such as on nuclear submarines, where even a small mishap can be potentially disastrous.  Nuclear submarine staff must perform regular checks, submit reports anytime they notice or feel that something has gone wrong, and have good teamwork and communication to ensure that the submarine is functioning optimally 24 hours a day, 7 days a week.  Likewise, hospitals, too, can implement best practices to improve communication, adherence to protocols to provide the best patient-centric care.

Patients — and Their Families — Are Empowered to Critique Their Care

Establishing a culture of safety in hospitals is important and many efforts have been made to make patients’ voices heard.  Patients should feel that they are empowered to speak up if they witness that their medical care is unsafe.  

Hospitals typically have a website where patients can submit comments, questions, or complaints regarding care.  Patients can also take their concerns directly to hospital executives, the risk management division or even the hospital CEO.  As a last option, if talking to the hospital fails, patients can contact federal agencies overseeing care. In the United States, patients can submit grievances to the Centers for Medicare and Medicaid Services (CMS), part of the U.S. Department of Health and Human Services.

Conclusions

Hospitals endeavor to provide excellent care to patients, but when communication fails and protocols are ignored, the unimaginable can happen.  In James Titcombe’s case, three things were essential for healthcare practitioners, staff, and patients — 1) communication across the entire hospital spectrum, 2) breaking through the culture of fear by putting patients first and encouraging them — and their families — to speak up when they feel that their care could be better, and 3) implementation of sepsis protocols and response to patient concerns. While patients do not have the medical training that their clinicians do, the awareness of their own body is enough to inform the clinician when something just doesn’t seem right. 

Find James Titcombe on Twitter or visit his website, http://joshuasstory.com/.

Sources

Feinman, J. (2015).  “Jane Feinmann: Joshua’s story and its impact on patient safety.” The BMJ Opinion.. https://blogs.bmj.com/bmj/2015/12/08/jane-feinmann-joshuas-story-and-its-impact-on-patient-safety/ 

Joint Commission on Accreditation of Healthcare Organizations. (2012).  “Joint Commission Center for Transforming Healthcare Releases Targeted Solutions Tool for Hand-Off Communications.” Joint Commission Perspectives, 32(8), 1-3. https://www.ncbi.nlm.nih.gov/pubmed/22928243 

Kirkup, B. (2015).  “The Report of the Morecambe Bay Investigation.”  https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/408480/47487_MBI_Accessible_v0.1.pdf

Makary, M. A., & Daniel, M. (2016). “Medical error-the third leading cause of death in the US.” BMJ (Clinical Research Ed.), 353, i2139. https://doi.org/10.1136/bmj.i2139

Titcombe, J. (2013).  “Transform the culture of fear into a culture of learning.”  Health Service Journal. https://www.hsj.co.uk/comment/transform-the-culture-of-fear-into-a-culture-of-learning/5086847.article#.VdohT5ZIgYA

Titcombe, J. (2018).  “I wanted to find out how my baby died. Instead I got dishonesty and hostility.” The Guardian. https://www.theguardian.com/commentisfree/2018/may/17/baby-died-nursing-midwifery-council-furness-general-hospital