“Harrowing” stories of pain and suffering have been laid bare in a report which concludes that patients came to “avoidable harm” because the healthcare system failed to respond in a speedy and appropriate way when serious concerns were raised about some medical treatments.
A scathing inquiry into three NHS scandals sets out how patients were “dismissed” and “overlooked”.
The healthcare system has a “glacial” and “defensive” response to concerns over treatments, the inquiry found.
The review examined how the health service responded to concerns over pelvic mesh – which has been linked to crippling, life-changing complications including chronic pain, infections and loss of sex life; the anti-epilepsy drug sodium valproate – which has been linked to physical malformations, autism and developmental delay in many children when it is taken by their mothers during pregnancy; and hormone pregnancy tests such as Primodos – which are thought to be associated with birth defects and miscarriages.
The system “does not know” how many women have been affected by these scandals, the reviewers said.
They detailed “heart-wrenching stories” of how treatments provided on the NHS had “damaged lives” and highlighted how campaigners have fought for decades to “achieve acknowledgement” of their suffering.
“We met with hundreds of affected patients and their families … it became all too clear that those who have been affected have been dismissed, overlooked, and ignored for far too long. The issue here is not one of a single or a few rogue medical practitioners, or differences in regional practice. It is system-wide,” the review states.
More than 700 families from across the UK affected by the issues gave “harrowing details of their damaged lives”, which Baroness Cumberlege, chairwoman of the review, described as “heart-wrenching stories of acute suffering, families fractured, children harmed and much else”.
In a letter to Health Secretary Matt Hancock, Baroness Cumberlege said: “We have found that the healthcare system – in which I include the NHS, private providers, the regulators and professional bodies, pharmaceutical and device manufacturers, and policymakers – is disjointed, siloed, unresponsive and defensive.
“It does not adequately recognise that patients are its raison d’etre. It has failed to listen to their concerns and when, belatedly, it has decided to act, it has too often moved glacially.
“The system is not good enough at spotting trends in practice and outcomes that give rise to safety concerns.”
She added: “We must ensure the risks of increasingly complex healthcare are understood and, where the system is not sure of the risks, it must say so. Had it done so in the case of our three interventions, I have no doubt that much anguish, suffering and many ruined lives could have been avoided.”
“There is an institutional and professional resistance to changing practice even in the face of mounting safety concern, “ the report states.
Elsewhere in the report:
– It has been estimated that thousands of women could have been spared from suffering complications due to pelvic mesh had guidance been followed.
– The use of hormone pregnancy tests “should have been stopped” more than a decade before they were eventually withdrawn from the UK.
– It has been estimated that 20,000 Britons have been affected after being exposed to the sodium valproate as developing babies.
– “Hundreds” of babies are still being born each year to mothers taking the drug who are “unaware” of the risks.
The review, launched in 2018 by then health secretary Jeremy Hunt, made a series of recommendations including: the appointment of an independent Patient Safety Commissioner who sits outside the healthcare system; a call for the Government to issue an immediate “fulsome apology” on behalf of the healthcare system to the families affected; reform at the medicine and medical devices regulatory body; and a register for all “financial and non-pecuniary interests for all doctors”.
“Our Terms of Reference required us to investigate whether the response of the healthcare system was sufficiently robust, speedy and appropriate … we will show that it was not, resulting in avoidable harm,” the report states.
It adds: “It has taken this review to shine a light on systemic failings. That the healthcare system itself failed to do so suggests that it has either lost sight of the interests of all those it was set up to serve or does not know how best to do this.
“Patients have been affected adversely by poor or indifferent care, have suffered at the hands of clinicians who do not, or who chose not to listen, and have been abandoned by a system that fails to recognise and then correct its mistakes at the earliest opportunity.
“At times patients have been denied their fundamental right to have the information they need to make fully informed choices. These patients should not have to campaign for years or even decades for their voices to be heard.”
Baroness Cumberlege added: “I have conducted many reviews and inquiries over the years, but I have never encountered anything like this; the intensity of suffering experienced by so many families, and the fact that they have endured it for decades.
“Much of this suffering was entirely avoidable, caused and compounded by failings in the health system itself.
“The first duty of any health system is to do no harm to those in its care, but I am sorry to say that, in too many cases concerning Primodos, sodium valproate and pelvic mesh, our system has failed in its responsibilities.
“We met with people, more often than not women, whose worlds have been turned upside down, their whole lives, and often their children’s lives, shaped by the pain, anguish and guilt they feel as the result of Primodos, sodium valproate or pelvic mesh.
“It has been a shocking and truly heart-rending experience. We owe it to the victims of these failings, and to thousands of future patients, to do better.”
Health Minister Nadine Dorries said: “I want to pay tribute to the patients and families whose lives have been turned upside down by mesh, sodium valproate and Primodos, and to thank them for their brave contributions to this report. Their experiences make for harrowing but vital reading and have left me determined to make the changes that are needed to protect women in the future.
“While the NHS is a beacon of brilliant care and safety in the majority of cases, as this report demonstrates, we must do better. Our health system must learn from those it has failed, ensure those who have felt unheard have a voice and, ultimately, that patients are better protected in future.
“I want to thank Baroness Cumberlege and the review team for their comprehensive recommendations. We will now give this independent review the full and careful consideration it deserves before setting out our full response.”