Mesh victims ‘still fighting for justice' five years on from review
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.
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 First Do No Harm review, published in 2020, found patients were 'dismissed' and 'overlooked', while the healthcare system had a 'glacial' and 'defensive' response to concerns over treatments.
It set out a series of recommendations, but campaigners have said that to date, some three of the nine recommendations set out in the review have been implemented.
Sling the Mesh said that the Government had not done a retrospective audit to gauge the scale of the harm caused by mesh implants or provided compensation for women injured as a result.
I welcome this reply from the new Minister for Patient Safety re the Hughes report recommendations. The government now needs to act quickly to provide redress for those harmed – see the letter at https://t.co/Sj3SAXswHQ #redressnow pic.twitter.com/lkjB7UHcoq
— Patient Safety Commissioner (@PSCommissioner) August 19, 2024
It also said that ministers had not delivered on a recommendation to reform of the Medicines and Healthcare products Regulatory Agency (MHRA).
Kath Sansom, founder of the Sling The Mesh campaign, said: 'It's not good enough. Five years ago, Baroness Cumberlege laid bare the systemic failures that caused irreparable harm to women across the UK.
'Yet here we are in 2025, and the Government has dragged its feet on the most critical reforms.
'Women are without compensation and still being failed by a healthcare system that was supposed to protect them.'
MP Sharon Hodgson, chairwoman of the All-Party Parliamentary Group for First Do No Harm, said: 'To have this little progress five years on from the publication of the report is hugely disappointing.
'Five years ago today, things felt hopeful. The review marked what we thought would be the beginning of real systematic change, the start of building a system that listens to women when they report harm – an end to defensiveness and denial.
'Yet progress can only be seen in three out of the nine changes she proposed, with one still ongoing – leaving five completely untouched.
'Crucially, thousands of women and families who were irreversibly harmed through no fault of their own are yet to see compensation.
'Money will not make up for all they have endured. However, it would at the least remove the financial burden placed on their lives – helping them to navigate the physical, mental and financial impact these scandals have placed upon them and their families.
'Five years on, the time for excuses is over. We need action now and I call on my Government to implement all the recommendations, including updating the House on a timeline for compensation as soon as possible.'
Rebekah Smith, Epilepsy Action's chief executive, said: 'It is a scandal that as far back as 35 years, thousands of women with epilepsy weren't being told about the risks involved with taking valproate in pregnancy when evidence was mounting. These women have had to live with the reality of that for decades and the huge emotional and financial impact it has on their lives.
'It is also a scandal that two reports in the last five years have recommended that families be compensated for the ordeal and yet those affected are still waiting for the light at the end of the tunnel.'
Nicola Swanborough, head of external affairs at the Epilepsy Society, said: 'Five years after the publication of the Cumberlege Review, we welcome the fact that regulations have been tightened around the prescribing of valproate for women with epilepsy, reducing the risk of harm for the next generation.
'But for the families whose lives have been devastated by the side effects of valproate, there has still been no promise of the compensation that they have long campaigned for, and which was recommended by the Patient Safety Commissioner.'
One of the key recommendations of the report was the appointment of a Patient Safety Commissioner, who would be an 'independent public leader with a statutory responsibility'.
A commissioner was appointed, but following the Government's 10-year plan for health last week, it has been confirmed that this role will be transferred into the MHRA.
Ms Sansom said: 'Moving the Patient Safety Commissioner role to the MHRA silences the patient voice instead of strengthening it.
'It strips away independence, undermines trust, and betrays the very women this role was created to protect.'
Earlier this month, Health Secretary Wes Streeting said that patients do not need 'ventriloquists' from arm's length bodies to speak for them, and more weight should be given to the likes of MPs and councillors.
Mr Streeting suggested the patient safety landscape is 'cluttered', with NHS leaders receiving 'competing and contradictory instructions' from different organisations.
A Department of Health and Social Care spokesperson said: 'The harm caused by pelvic mesh continues to be felt today. Our sympathies are with those affected and we are fully focused on how best to support patients and prevent future harm.
'This is a complex area of work and the Government is carefully considering the Patient Safety Commissioner's recommendations in full.
'Health Minister Baroness Gillian Merron met patients affected and has committed to providing a further update.'
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