I am grateful for the opportunity to bring to the House the issue of the diagnosis of pulmonary embolism. Given the content of this debate, I put on the record that my husband is employed by the NHS.
I applied for the debate on behalf of my constituent Tim Edwards, who is watching the debate from the Public Gallery. Tim’s mother, Jenny, taught for 27 years in Lewes, East Sussex, before retiring in 2012. Jenny sadly lost her life to pulmonary embolism in February 2022. My speech is about the experience of Jenny and her family, and the research that Tim has undertaken in the aftermath of his mother’s death, which points to a significant issue with preventable deaths occurring as a consequence of misdiagnosed pulmonary embolism.
First, I want to put on the record my sincere condolences to Tim and his family on the loss of his beloved mother. I understand that in the weeks immediately prior to her death, Jenny had been enjoying time with her first grandchild. I am sure that, as Tim and his wife watch their daughter grow, they are constantly reminded of the relationship that she will now not be able to enjoy with her grandmother. Tim is motivated by his loss to seek to ensure that positive learning is derived from his mother’s case and many similar cases, so that diagnosis and the prompt treatment of pulmonary embolism is improved.
Globally, venous thromboembolism, which presents clinically as either deep vein thrombosis or pulmonary embolism, is the third most frequent acute cardiovascular syndrome behind heart attack and stroke. Pulmonary embolism is a blood clot in the vein passing to the lung and causing heart failure. The disease is serious but eminently survivable—if it is promptly diagnosed and treated, the death rate is 8%. Unfortunately, many pulmonary embolisms are misdiagnosed and attributed to other acute cardiovascular conditions because of the overlap of symptoms and the greater ease in identifying heart attacks and strokes.
My constituent has undertaken considerable research since his mother’s death, working with the charity Patient Safety Learning. He has estimated that there was a minimum of 400 excess pulmonary embolism deaths across England from April 2021 to March 2022, and that that excess figure is attributable to cases that were missed. He also looked at the age-adjusted mortality rates for pulmonary embolism across counties in England and Wales. There are some regions where the number of fatalities from the condition is almost three times the national average. The Minister may want to inquire as to what drives that discrepancy.
Let me give a sense of what can and does go wrong. In early February 2022, despite exhibiting risk factors and sudden symptoms, including fainting and collapse, my constituent’s mother, Jenny, was wrongly misdiagnosed in the care of an emergency department as having had a heart attack. She was then needlessly fitted with a stent. Upon her discharge from hospital, Jenny’s condition got worse again at home. She was dying. Yet she was reassured by a cardiac nurse who, over the phone, missed the clinical signs that indicate pulmonary embolism: shortness of breath, chest pain in the centre of the chest and fainting. The nurse advised that if these symptoms continued, Jenny should call her GP, and she did so, but she never made her GP appointment. My constituent does not want this to happen to other family’s loved ones, because it was entirely avoidable.
I commend the hon. Member for Dulwich and West Norwood (Helen Hayes) on securing this debate. She is quite right to bring this issue before the House, as pulmonary embolisms are not widely known about and are extremely challenging to diagnose. When diagnosed and treated, the survival rate is very high, and that makes misdiagnosis all the more tragic.
Let me express my condolences to Tim Edwards and his family for the loss of his mother earlier this year. I thank him for the research that he carried out into deaths from pulmonary embolisms, including the information that he has gathered about the variation in the figures around the country. The hon. Member set out clearly the sad facts of Jenny Edwards’ death, particularly how her pulmonary embolism was not diagnosed and unknown until the autopsy. I recognise the need for better diagnosis and I agree with her about the importance of that. I will talk about what we can and are doing, taking on board the hon. Member’s points. I will also talk about reducing deaths from pulmonary embolism by preventing their occurrence. We can never completely remove the risk of embolism, but we can all take action, especially younger people, to reduce the risk.
The NHS has guidance from the National Institute for Health and Care Excellence about diagnosing and treating pulmonary embolisms effectively, which states that patients with symptoms or signs of pulmonary embolisms who see a clinician should have a full medical history, physical examination and chest X-ray. Where there are signs, a D-dimer blood test and the Wells score should be used to determine the likelihood of pulmonary embolism. The challenge is often for the clinician to see the signs and symptoms in the first place, which is increasingly difficult in older patients or those with co-morbidities such as bronchopneumonia, chronic obstructive pulmonary disease, asthma or covid-19. The hon. Member talked about that a moment ago.
4:54 pm
House adjourned.
Jenny was waiting in accident and emergency for more than 12 hours, and there were nine independent decision-making points, at any one of which pulmonary embolism could and should have been diagnosed, but the condition was only discovered in an autopsy. My constituent has subsequently been motivated to write a report about what went wrong, given the mistakes that Jenny experienced and his sense that the NHS trust involved was unable to learn from what happened. His background is in the financial services sector, working in reinsurance, and he has a strong understanding of risk management. From a review of Jenny’s case and a report released by the Healthcare Safety Investigation Branch on this topic, part of the problem contributing to misdiagnosis appears to be that many emergency departments are frequently under-resourced and over-reliant on junior staff who may be ill-equipped to reliably suspect, assess and then treat pulmonary embolism, which is a relatively complex condition. That is supported by information provided by the Royal College of Radiologists, which commented on the lack of workforce sufficiency and a shortage of equipment.
Clinical staff in these settings have commented that either they do not have time or, astonishingly, do not feel that they need to follow clinical guidelines on how best to diagnose pulmonary embolism. On that last point, my constituent observes that there appears sometimes to be a culture of excessive leeway for clinicians to make their own decisions and a reluctance to follow clinical best practice. This is a source of concern.
My constituent has also discovered by interviewing a leading European professor in this area that the British clinical guidelines for diagnosing pulmonary embolism are out of step with those adopted across Europe and appear to exacerbate the risk of misdiagnosis, because the guidelines are thought of as subjective. He welcomes the news that these clinical guidelines are currently being reviewed. My constituent is also concerned that prior covid-19 infection has complicated the process of diagnosis in recent years, because some symptoms may be dismissed as linked to covid. However, this is inexcusable, as covid-19 was first established as an additional risk factor for pulmonary embolism by studies across Europe and the US in 2022. Prior covid-19 infection should give rise to greater, not lesser suspicion for patients presenting with symptoms.
In Jenny’s case, well-documented symptoms of pulmonary embolism were discounted because of her prior covid-19 infection, although it had been asymptomatic and she had made a full recovery. My constituent reports that it seemed that clinicians were assuming that covid-19 had been beneficial to Jenny’s health. Upon my constituent’s complaint to the NHS trust responsible for Jenny’s care, a serious incident report was commissioned and an inquest took place. However, in my constituent’s opinion, the NHS trust appears to have exhibited what he describes as a “shrug of the shoulders, these things happen” conclusion, inhibiting sufficient learning.
My constituent demonstrates in his report that the clinicians who treated his mother are at odds with academic literature on the symptoms of pulmonary embolism when they discuss the rationale behind their decisions. That is deeply troubling, given the alarming rise in pulmonary embolism fatalities across the country. The trust used the lowest level of investigation to contribute to its serious incident report, meaning that the subject matter experts chosen to contribute to the report were all involved in Jenny’s original care. The report’s conclusion was that a pulmonary embolism could not have been detected, even though Jenny displayed symptoms consistent with 90% of pulmonary embolisms. My constituent disagrees with the report conclusions, and he is concerned that it lacks objectivity and that there is insufficient learning to prevent such misdiagnosis from happening again. A higher level of investigation would have ensured independent contributors to the report, and the lack of that gives rise to concern about how many other cases may have been inadequately reviewed.
The sadness and frustration that my constituent feels at the circumstances of his mother’s death have been compounded by the intransigence he has witnessed in the NHS trust responsible for her treatment and the discovery that Jenny’s case was not alone. My constituent has been working with the charity Patient Safety Learning and his report will be published in December. The report contains nine calls for action. I have read the report and I have also received a response from NHS England to the recommendations in the draft. I share my constituent’s concerns that the response falls back on existing guidelines and current practice. It does not acknowledge my constituent’s finding of around 400 potentially preventable deaths a year due to misdiagnosed pulmonary embolisms. It makes no commitment to any process of review or change.
The Royal College of Radiologists has also expressed concerns consistent with my constituent’s observation about resourcing issues in emergency departments, and workforce and equipment sufficiency to enable scans to be undertaken. It stated that clinicians do not always have the equipment necessary to provide optimum care. The current vacancy rate in clinical radiology consultants is 8%.
My constituent’s research on this issue following the tragedy that his family has suffered is commendable. It highlights serious problems with excess deaths and misdiagnosis, raises serious questions about a postcode lottery, workforce sufficiency and the availability of equipment, and raises concerns about the culture of learning in the context of misdiagnosis.
I ask the Minister to agree to work with NHS England to commission a review of the data set out in my constituent’s report and the concerns raised by the Royal College of Radiologists, with a view to ensuring that the rate of misdiagnosis of pulmonary embolism is greatly reduced, and fewer families have to suffer the loss that my constituent and his family have suffered.
That challenge is very much the focus of the Healthcare Safety Investigation Branch’s national investigation into the timely recognition and treatment of pulmonary embolisms in emergency departments. Its report was published in March this year, and it focuses on clinical decision making and improving diagnoses. HSIB notes that the majority of pulmonary embolisms were correctly identified and treated, but it felt that the risk of serious harm or death warranted further exploration. The report found that recognising pulmonary embolism is particularly challenging for less experienced staff, especially when the signs and symptoms may be non-specific or atypical. The decision to initiate treatment is one that balances risks, and the decision can benefit from expert knowledge and skill. The report also notes that, despite expertise and the available tools to identify patients who may have a pulmonary embolism, a small number may always sadly be missed.
During the investigation, HSIB found that emergency department staff had asked for further guidance on the diagnosis of pulmonary embolism. The fact that staff sought that information is a good thing and the right thing to do. HSIB made three safety recommendations on improving guidance and training for clinical staff. First, it recommended that NICE should review the report in relation to its thrombosis guidance. In response, NICE carried out a review of the guidance and has decided to update it to include recommendations for people with covid-19. NICE currently expects to publish the updated guidance in July.
Secondly, HSIB recommended that the Royal College of Emergency Medicine promotes best practice for diagnostic decision making. The royal college is reviewing its guidance, which will be done by the end of this year. In addition, it is reviewing safety information about pulmonary embolism and has education activities planned, including e-learning.
Finally, HSIB recommended that Health Education England develops a strategy to support the training of clinicians to develop their decision-making skills. Health Education England is working closely with professional bodies and provides them with simulation-based interventions to support improved outcomes in patient safety.
Getting a diagnosis of pulmonary embolism is by far the most critical issue to address, as treatments are effective provided that they are administered quickly. Anticoagulation medicines are the main treatment for suspected and confirmed pulmonary embolism. These medicines reduce the formation of further blood clots. After a diagnosis is confirmed, patients continue treatment with longer-term anticoagulant medicines to prevent the formation of future clots.
The importance of effective diagnosis and treatment for people with pulmonary embolism cannot be overstated. While we are on the topic, however, we can all take steps in our day-to-day lives to avoid an embolism—I am not making these comments in relation to any individual case, including the sad death of Jenny Edwards that the hon. Lady has been talking about, but for wider society.
Smoking raises the risk of unwanted blood clots and makes it more likely that platelets will stick together. Smoking also damages the lining of the blood vessels, which can cause clots to form. Stopping smoking significantly reduces those risks. Sitting or being sedentary for long periods, such on a long-haul flight or working at a desk, increases the risk of clots forming. Because the blood is not flowing as much, the cells and proteins in blood settle out and form clumps. Taking regular breaks and moving around reduces the risk of clot formation. Regular exercise, staying hydrated, eating healthily and maintaining a healthy weight are actions that we can all take to reduce the risk of blood clots, which may lead to a pulmonary embolism.
GPs have an important role to play in helping to identify people at risk. The quality and outcomes framework and the investment and impact fund incentivise GPs to deliver proactive case finding and early intervention for patients at higher risk, as well as the ongoing management of patients with long-term conditions that put them at greater risk of blood clots.
In conclusion, raising awareness of pulmonary embolisms in clinical settings, and the significance of early diagnosis, is important but challenging. These challenges must be overcome, as timely and accurate diagnosis of pulmonary embolisms will save lives. Today’s debate has been an important opportunity to talk about how the healthcare system is working hard to improve on the issue. The hon. Member mentioned some research, and I would be happy for her to send it to me so that I can make sure that it is taken on board in some of the work that is going on in this area. I again pay tribute to her constituent, Mr Edwards, who has turned his personal tragedy into action to prevent future deaths due to pulmonary embolism, and for that he should be proud.