Daniel Mason was born half a century ago without hands, with missing toes, a malformed mouth and impaired vision.
From an early age, he — and his family — had to deal with people asking about his disabilities. The impact on his life has been considerable.
His car, clothes and eating implements must be tailored to his needs. He has not been able to form intimate relationships. Not surprisingly, he has suffered bouts of depression.
We must accept that everyone, even doctors and nurses, can make errors. And it would be far kinder to distressed families not to drag out legal battles for years, writes Ian Birrell (file photo)
Daniel’s mother Daphne long suspected the cause of his problems was a powerful hormone tablet called Primodos that was given to women to determine whether they were pregnant. But when she raised her concerns with doctors, they were dismissed.
Now, at last, Daphne has been vindicated with official confirmation this week that her fears were right, in a 277-page landmark review by Baroness Cumberlege into three separate health scandals that has exposed a litany of shameful failings by the NHS, regulatory authorities and private hospitals.
Julia Cumberlege spent two years talking to 700 people about two drugs — Primodos and sodium valproate, a common epilepsy treatment — that left children with disabilities, and about pelvic mesh implants (used to treat injuries resulting from childbirth) that caused agonies for thousands of women.
She heard ‘harrowing’ stories of devastated lives, dismal care, arrogant doctors, altered records, disbelieving authorities and often-sexist lack of concern over hideous damage caused by medical failure.
Cumberlege was shocked by the ‘sheer scale . .. and intensity of suffering’ and added that much of it was avoidable, caused and compounded by the system.
‘Some of those stories I will certainly take to my grave,’ she said.
Even now there is no data on how many people were affected in a ‘disjointed’ health system that lacked leadership, ignored patient concerns and perpetuated mistakes because of inept regulation and a culture of denial.
Like it or not, this is the flip side of the sanctified NHS, applauded by most of the country for its fine response to coronavirus.
How many more of these inquiries must be held? How many more disturbing reports and reviews must be written?, writes Ian Birrell (file photo)
This damning report shows again the danger of placing a public service on a pedestal, with politicians happy to spout platitudes but scared to tackle systemic problems or confront the medical establishment.
The report confirms something I have long argued, having glimpsed it as the parent of a daughter with complex disabilities: the NHS ‘does not adequately recognise that patients are its raison d’etre’.
Bear in mind there is only one reason this review was ordered in 2018 by then Health Secretary Jeremy Hunt: because abused and wounded patients, mostly women (and some of them helped by this paper) had fought long, lonely battles to secure justice.
But how many more of these inquiries must be held? How many more disturbing reports and reviews must be written?
How many more times must we listen to ministerial apologies to betrayed patients? How much more must we hear of ‘lessons being learned’ when clearly they are largely ignored?
Just last week it emerged that police are investigating Shrewsbury and Telford Hospital NHS Trust over maternity failings that may end up as the worst patient-safety scandal in NHS history.
Leaked reports in 2019 revealed that at least 42 babies and three mothers died over almost four decades, with 50 more children suffering serious brain damage. Since then, the number of cases being probed has surged to 1,200.
This year, another inquiry disclosed that Ian Paterson, a rogue breast surgeon, had subjected more than 1,000 patients to unnecessary and damaging operations over 14 years before he was stopped.
That report also blamed a ‘culture of avoidance and denial’, with patients let down repeatedly in a ‘dysfunctional’ system — by hospitals, then by regulatory authorities which treated them with disdain.
These join a long list of shameful sagas: haemophiliacs dying from tainted blood; infants dying during cardiac surgery because of lax safety measures in Bristol; elderly people left to die in squalid conditions in two mid-Staffordshire hospitals; paediatric deaths amid a cover-up in Morecambe Bay.
James Titcombe, whose son Joshua died nine days after his birth at Furness General Hospital in Morecambe Bay, then fought with great courage to expose the ‘lethal mix of failures’ so other families did not suffer similar grief.
A general view of Furness Hospital in Barrow, Cumbria, where James Titcombe’s son Joshua died nine days after his birth in Morecambe Bay (file photo)
He argues that these major inquiries into healthcare scandals all end up repeating the same themes, with patients and families suffering the ‘sharp end of systemic safety failures, often enduring unimaginable trauma — and when they try to raise the alarm, instead of listening to them, the system responds as if they are the problem’.
This is the enduring tragedy of the NHS. Certainly some things have improved with better training, more medical staff embracing transparency and reforms such as the statutory imposition in 2014 of a ‘duty of candour’ requiring every healthcare professional to be open and honest with patients (or their carers or families) when something goes wrong with their treatment.
Yet there remain too many third-rate managers, too many doctors who think they own the health service, and too many parts of the system that still cover up mistakes.
Take whistleblowers — essential for any safety-focused organisation. In 1997 Alan Milburn, then Labour’s health minister, said all NHS staff must have ‘maximum freedom of speech’ without fear of victimisation. Then came legislation to enforce his edict.
Jeremy Hunt, pictured above, deserves credit for at least understanding that patient safety is a crucial issue – even listing hospital mistakes on his office whiteboard, writes Ian Birrell
Milburn’s successors have said much the same. Yet one mental health nurse who blew the whistle on abuse of teenagers, leading to a hospital’s closure, told me of struggling to get another job, ending up on a much lower pay grade and frequently hearing from others who feared to tell the truth.
Jeremy Hunt deserves credit for at least understanding that patient safety is a crucial issue — even listing hospital mistakes on his office whiteboard.
His successor Matt Hancock ditched the whiteboard and is, sadly, less safety-focused.
Some critics point to the rising costs of compensation paid out by the NHS, with an estimated bill of £9 billion a year, as one reason for the refusal of managers and clinicians to face up to problems. But these costs would plummet if the NHS was more open about its mistakes, stopped trying to silence those raising concerns and was more prepared to apologise.
We must accept that everyone, even doctors and nurses, can make errors. And it would be far kinder to distressed families not to drag out hostile legal battles for years, driving up the bills and pain.
Clapping carers in this crisis has united the nation. But we should not ignore how the same precious health system routinely inflicts grief, pain and suffering on those it is meant to help
Now there is a proposal for a Patient Safety Commissioner. This has potential but only if they are empowered as a strong, independent voice for harmed patients and families.
Those who suffer are often the most vulnerable in society: the elderly, newborn babies and people with learning disabilities, three of whom die each day on average because of avoidable failings in the NHS.
Clapping dedicated carers in this crisis has united the nation. But we should not ignore how the same precious health system routinely inflicts grief, pain and suffering on those it is meant to help, such as Daniel and Daphne Mason.
If we really love the NHS, then, as with any marriage, we must cherish it both for better and for worse.