NHS patients raising safety concerns are too often “gaslighted”, “fobbed off” or dismissed as “difficult women”, according to England’s patient safety commissioner, who criticised health leaders for a “relentless focus” on finance and productivity.
Dr Henrietta Hughes said patients and loved ones sounding the alarm about substandard care should be an early indicator of danger or potential harm, but far too frequently they were completely ignored. NHS trusts focusing too much on budgets meant that “the culture becomes toxic, and we’re just on the road back to the Mid Staffs scandal”, she added.
Hughes was referring to the failures at Mid Staffordshire NHS foundation trust, where hundreds of patients were neglected, dismissed or ignored between 2005 and 2009. Some were left lying in their own urine, unable to eat, drink or take essential medication.
“The patient’s anecdote is the canary in the coalmine,” she said. “It’s the thing that tells us there’s something going wrong. But too often we hear about patients who have raised concerns being gaslighted, dismissed, and fobbed off.”
Hughes, who was appointed to her role in 2022, said she was determined to bring about improvements in patient safety but was “swimming against the tide” when it came to making a lasting cultural change in the NHS.
Speaking to the British Medical Journal (BMJ), Hughes also said women in some cases had been patronised and had legitimate fears dismissed.
Her role was created after a damning report examined three scandals: hormone pregnancy tests that are thought to be associated with birth defects and miscarriages; sodium valproate, an antiepileptic drug that can cause birth defects when taken by pregnant women; and pelvic mesh implants, which have been linked to serious complications.
Hughes said that, too often, patients raising concerns were simply passed off as “difficult women”. She said: “It shows a very dismissive and very old-fashioned, patronising attitude to patients who have identified problems and need to have their voices heard.”
The former medical director at NHS England and national guardian for the NHS does not examine individual cases, but wants to simplify the way people can access help and make their voices heard.
“There’s over 100 patient safety organisations, and one of the things that we’ll be working on this year is doing the Patient Safety Atlas of Powers, an easy-to-read guide of the arm’s length bodies and regulators and what their roles and remits are,” she said.
“Because as far as I’m concerned, they don’t join up. They don’t reference the next step in the chain.”
Callout
Hughes said Martha’s rule was one area where she felt her team had really made a difference.
This patient safety initiative, enabling those whose health is failing to obtain an urgent second opinion about their care, is to be introduced in 143 hospitals in England, the NHS said in May.
The move followed pressure on politicians, NHS bosses and doctors after Merope Mills, a senior editor at the Guardian, and her husband, Paul Laity, told the story of what happened to their daughter, 13-year-old Martha, who died of sepsis at King’s College hospital in London in 2021.
Martha had sustained an injury to her pancreas when she fell off her bike on a summer holiday. However, doctors at King’s College did not listen to her parents’ concerns, including the possibility Martha could have had sepsis, a major cause of avoidable death that kills an estimated 40,000 people a year in the UK.
“I’ve never seen something happen at that scale and speed before, particularly in such a collaborative way,” Hughes said of the Martha’s rule initiative.
However, beyond that success, NHS trusts were in danger of focusing too much on finance, which was making the working culture “toxic”, she added.
Last year she pointed out in a report that neither the Department of Health and Social Care nor NHS England had patient representatives on their boards, nor did they regularly hear from a patient at their board meetings. Hughes said she still believed this to be the case.
“I’ve been continuously raising this concern that I have, that safety is seen as some kind of sideshow rather than as central and paramount,” she said. “The relentless focus on productivity, finance and performance is really missing a huge opportunity to start with patients and start with safety.”
But Hughes said she was “swimming against the tide” when it came to making a lasting cultural change with her role, which is funded by the Department of Health and Social Care. “People are quite comfortable with the way they do things already.”
A Department of Health and Social Care spokesperson said: “Too many patients are not listened to, treated with respect, or given the information they need to access the right services. This government will prioritise patient safety to ensure that the NHS treats everyone with the high quality and safe care that they deserve.”
A spokesperson for NHS England said: “It’s vital that everyone working in the NHS listens to and works with patients to identify and act upon concerns, and learns from experiences so they do not happen again.”
