Government should issue 'fulsome apology' to families caught up in NHS scandals

8 July 2020, 10:12

By Megan White

The Government should issue a "fulsome apology" to families caught up in three NHS scandals, a damning review has concluded.

"Harrowing" accounts of patient pain and suffering have been detailed in the review into the hormone pregnancy test Primodos, the anti-epilepsy drug sodium valproate and pelvic mesh.

A scathing inquiry found patients were "dismissed" and "overlooked," despite accounts of pain and suffering.

It concluded 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.

The review examined how the health service responded to concerns over pelvic mesh - which has been linked to life-changing complications including chronic pain, infections and loss of sex life; 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.

File photo: Yasmin Qureshi MP (fifth from left) and Chair of the Association for Children Damaged by Hormone Pregnancy Tests Marie Lyon (third from right)
File photo: Yasmin Qureshi MP (fifth from left) and Chair of the Association for Children Damaged by Hormone Pregnancy Tests Marie Lyon (third from right). Picture: PA

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.

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.

"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 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".

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."