Jenny, and why we must learn from her misdiagnosis of pulmonary embolism

Summary

Jenny Edwards died in February 2022 from pulmonary embolism, following misdiagnosis.

In this blog, her son Tim introduces us to Jenny, illustrating the deep loss felt following her premature passing. He talks about the care she received and argues that there were multiple points at which pulmonary embolism should have been suspected.

Tim found the investigation that followed Jenny’s death to be lacking in objectivity and assurance that any learning could be taken forward. He has since produced an independent report, drawing on existing data, freedom of information requests and his mother’s case, to highlight broader safety issues.

Content

Jenny, my mother

Jenny was a much-admired mother, grandmother and friend. She had a strong determination and an uplifting zest for life; she was loyal and we, her family, miss her. Her passions were many, from her love of travel to places of geographic interest, to line-dancing and amassing a curious Tupperware collection.

Jenny attended university in the 1960s, a time when women from her background were discouraged from attending further education. Having graduated, Jenny then worked for British Leyland and later moved to Germany with my father where she taught English. During which time she had me. Jenny returned alone with me to England in 1985, to no home or job. Her ability and determination ensured she quickly got a teaching role, then a home – she subsequently taught GCSE and A-Level for 27 years at Lewes Old Grammar School, living in the Brighton area that she called home. 

Unfortunately, my mother, Jenny, passed away prematurely from a pulmonary embolism in February 2022 following misdiagnosis. I am seeking to help derive a positive learning from her death and, unfortunately, many other similar recent cases. While she was 74, an extra 5 or 10 years would have made a great difference to our family – it has deprived my mother of time with her first grandchild, my daughter, who was born just weeks earlier in January 2022.

A catalogue of errors taking away valuable years’ left of life

Jenny, my mum, should likely not, medically speaking, have passed away on Sunday 27 February 2022 of a pulmonary embolism – a blood clot in her vein passing to her lung causing heart failure. Studies indicate that the death rate for diagnosed and treated pulmonary embolism is 8%.[1] She had never smoked in her life, exercised regularly and all had appeared well with her health at the start of 2022. She had received a letter from her GP granting her travel insurance that would have allowed her to travel to the Greek Islands and, later in the year, to the Baltic countries.

In early February, despite exhibiting risk factors and sudden symptoms, including fainting and collapse, my mother 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 her condition got worse again at home – she was dying – and yet she was reassured by a cardiac nurse who, over the phone, missed the signs of shortness of breath, chest pain (in the centre of the chest) and of fainting. The nurse advised that if the symptoms continued that my mother should call her GP. My mother never made her GP appointment. I don’t want this to continue to happen to other family’s loved ones. This was entirely avoidable.

Jenny was waiting in A&E for over 12 hours and there were nine independent decision-making points where at any one of these, pulmonary embolism could and should, in totality, have been diagnosed. Pulmonary embolism was only discovered in an autopsy, and yet she exhibited symptoms consistent with 90% of pulmonary embolism patients.[2] 

A lack of learning forcing me to act

Upon my complaint to the NHS trust that oversaw my mother’s care, a Serious Incident Report was commissioned by the trust and an inquest set up. However, in my opinion, the NHS trust appears to have exhibited a ‘shrug of the shoulders, these things happen conclusion’, inhibiting sufficient learning from my mother’s case.

NHS England’s 2015 Serious Incident Framework was in operation at the time of the trust’s Serious Incident Report,[3] encouraging hospital trusts to appoint independent reviewers to ensure objectivity. However, the subject-matter experts chosen to contribute to the report were all involved with the original care of my mother and, hence, objectivity of the report was lost.

The frustration I feel at the loss of my mother has then been compounded by the intransigence of the NHS trust that oversaw my mother’s case, and then the discovery that my mother’s case was not alone. Indeed, far from it.

Image: Tim with his wife and little girl. 

References

1. Belohlavek J, Dytrych V, Linhart A. Pulmonary Embolism, Part I: Epidemiology, Risk Factors and Risk Stratification, Pathophysiology, Clinical Presentation, Diagnosis and Nonthrombotic Pulmonary Embolism. Experimental and Clinical Cardiology 2013: 18; 129-138.
2. The Task Force for the Diagnosis and Management of Acute Pulmonary Embolism of the European Society of Cardiology (ESC), 2008.
3. NHS England. Serious Incident Report Framework, 2015.

Read the recently published, independent report Tim authored:

• Independent Review of Pulmonary Embolism fatalities in England & Wales - recent trends, excess deaths, their causes and risk management concerns

Further reading

• Press release (Patient Safety Learning)
• House of Commons Debate - Pulmonary Embolisms: Diagnosis (30 November 2022)
• Royal College of Radiologists: Briefing for pulmonary embolism debate (November 2022)
• HSIB - Clinical decision making: diagnosis of pulmonary embolism in emergency departments (24 March 2022)

About the Author

I am Jenny’s son, Tim Edwards, the author of a report, ‘Independent Review of Pulmonary Embolism fatalities in England & Wales - recent trends, excess deaths, their causes and risk management concerns'. I have been motivated to write an independent report given the specific mistakes in hospital care that my mother experienced and a sense that the NHS trust involved were unable to learn from these.

My experience in the financial services industry of assessing and mitigating risk, then putting in place meaningful action plans may, I hope, be useful in reviewing this concern. Along the way, I have received great support from Dr Jane Carthey and Helen Hughes, Chief Executive of Patient Safety Learning, to whom this report would otherwise not have been possible.