NHS patients raising concerns about their safety are too often ‘brushed aside’, says commissioner

NHS patients who raise concerns about their safety are too often “manipulated”, “fobbed off” or dismissed as “difficult women”, according to the UK’s patient safety commissioner. He criticised health leaders for their “relentless focus” on finances and productivity.

Dr Henrietta Hughes said patients and loved ones raising the alarm about substandard care should be an early indicator of danger or potential harm, but far too often they were completely ignored. NHS trusts focusing too much on budgets meant “the culture became toxic and we were just heading back to the Mid Staffs scandal again”, she added.

Hughes was referring to the failures at Mid Staffordshire NHS Foundation Trust, where hundreds of patients were neglected, rejected or ignored between 2005 and 2009. Some were left lying in their own urine, unable to eat, drink or take essential medicines.

“The patient story is the canary in the coal mine,” she said. “It’s the thing that tells us something is going wrong. But too often we hear about patients who have raised concerns and are manipulated, dismissed and fobbed off.”

Hughes, who was appointed to her new role in 2022, said she was determined to deliver improvements in patient safety but was “swimming against the tide” when it came to delivering lasting cultural change in the NHS.

Speak to the British Medical Journal (BMJ)Hughes also said that in some cases women were patronised and their legitimate fears were ignored.

Her role was created after a damning report investigated three scandals: hormonal pregnancy tests believed to be linked to birth defects and miscarriages; sodium valproate, an anti-epileptic drug that can cause birth defects if taken by pregnant women; and pelvic floor mesh, which has been linked to serious complications.

Hughes said patients who raised concerns were too often portrayed as “difficult women”. She said: “It shows a very dismissive and very old-fashioned, condescending attitude towards patients who have identified problems and want to make their voices heard.”

The former medical director at NHS England and national guardian for the NHS does not investigate individual cases but wants to simplify the way people can access help and make their voices heard.

“There are over 100 patient safety organisations and one of the things we’re going to be working on this year is creating the Patient Safety Atlas of Powers, an easy-to-read guide to the independent bodies and regulators and what their roles and powers are,” she said.

“Because as far as I’m concerned, they don’t connect. They don’t refer to the next step in the chain.”

Hughes said Martha’s leadership was the one area where she felt her team had really made a difference.

The patient safety initiative, which allows patients in poor health to get a second opinion about their care as quickly as possible, is being rolled out to 143 hospitals in England, the NHS said in May.

The move comes after politicians, NHS bosses and doctors came under pressure after Merope Mills, a senior editor at the Guardian, and her husband Paul Laity came forward to tell the story of what happened to their daughter Martha, 13, who died in 2021 from sepsis at King’s College Hospital in London.

Martha had suffered an injury to her pancreas when she fell off her bike during a summer holiday. However, doctors at King’s College ignored her parents’ concerns, including the possibility that Martha had sepsis, a leading cause of preventable death that kills an estimated 40,000 people a year in the UK.

“I’ve never seen anything happen on this scale, at this pace, and especially in such a collaborative way,” Hughes said of the Martha’s Rule initiative.

But despite that success, NHS trusts were at risk of becoming too focused on finance, making the workplace 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 patients at their board meetings. Hughes said she still believed this was the case.

“I’ve consistently expressed this concern that safety is seen as an afterthought rather than central and paramount,” she said. “The relentless focus on productivity, finances and performance really misses 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 lasting cultural change with her role, which is funded by the Department of Health and Social Care. “People are already quite comfortable with the way they do things.”

A Department of Health and Social Care spokesperson said: “Too many patients are not being listened to, treated with respect or given the information they need to access the right services. This Government will prioritise patient safety to ensure the NHS treats everyone with the high-quality, safe care they deserve.”

An NHS England spokesperson said: “It is vital that everyone working in the NHS listens to patients and works with them to identify and address concerns, and learn from experience so they don’t happen again.”