Vital information gathered about a serious condition is still not being published three years after the start of the Covid-19 pandemic, a charity has said.
Thrombosis UK has warned that deaths involving blood clots are higher than expected as it called for more transparency over the work hospitals are doing to reduce the risk for patients.
Before the pandemic hit, hospitals were regularly publishing data on the number of patients who had been risk assessed for blood clots.
In March 2020, the NHS in England took the decision to suspend the data collection on venous thromboembolism (also known as VTE) risk assessments to “release capacity in providers and commissioners to manage the Covid-19 pandemic”.
But the data collection and publication is yet to resume.
This hidden crisis is breaking families and costing thousands of lives across the country.— Jo Jerrome, Thrombosis UK
The charity said the data shows how many VTE cases are missed in hospitals.
This can highlight where clinicians may need extra support to help them prevent avoidable blood clots, it added.
It comes as the charity warned of a rise in the number of deaths linked to blood clots.
Data from the NHS show that 14,846 people aged 19 or over died in England from a VTE in 2021/22.
In 2019/20 this figure stood at 12,457.
Thrombosis UK chief executive, Jo Jerrome, said: “This hidden crisis is breaking families and costing thousands of lives across the country.
“There is a need for NHS England to reinstate data collection of VTE risk assessment – latest data collection have been delayed by the NHS, with no promise of whether it will be made available in the future.
“NHS staff are working under huge pressure, there needs to be much clearer guidance and support to make sure patients with VTE get spotted and lives get saved.”
One bereaved man described how his mother died last year after the condition was missed.
Tim Edwards, 42, said healthcare workers missed signs of the condition while Jennifer Edwards, 74, was in hospital on the south coast.
Despite having many symptoms of a pulmonary embolism she was discharged home and died three days later.
Mr Edwards, who is originally from Brighton but now lives in East Dulwich in south east London, said: ““My mother’s symptoms were missed from her admission to hospital right up to her time in the cardiology department.
“She was discharged and passed away three days after phoning the NHS with shortness of breath.
“She should not have died. I took it upon myself to enquire about the circumstances surrounding her death and was overwhelmed by the lack of care taken.
“Sadly, I know this is not an isolated case.”
Mr Edwards said he was “so glad” that his mother was able to meet his baby daughter Anais just three weeks before her death.
Thrombosis expert Beverley Hunt, professor of haematology at Guy’s Hospital in London, said: ““A missed or delayed blood clot diagnosis can be fatal, but it can also cause long-term disability and long-lasting ill-health problems, many of which are avoidable.
“The NHS must realise the urgency of the issue at hand and prevent further unnecessary deaths due to missed cases.
“Urgent action is required to improve training for of trainee healthcare professionals to include the common signs, symptoms of VTE, and for more to be done to raise public awareness.”
An NHS spokesman said: “Teams across the NHS are able to use D-Dimer testing in conjunction with other diagnostic tests to find symptoms of venous thromboembolism (VTE), allowing associated complications to be dealt with swiftly.
“Over the next few years, we are investing £100 million in imaging capacity in acute settings which will enable quicker access to these tests so issues such as VTE are picked up earlier – the creation of up to 160 Community Diagnostic Centres across the country will also enable better diagnostic access to anyone using the NHS.”
NHS England was also asked whether the VTE data collection would be reinstated.