KUALA LUMPUR, Sept 8 — Patients who believe they were harmed by medical treatment need an independent place to turn for explanations and advice before resorting to litigation, said a United Kingdom patient safety charity.
Jocelyn Cornwell, chair of the trustee board of Action against Medical Accidents (AvMA), said an organisation like AvMA could be useful in Malaysia by helping patients understand what happened to them, navigate complaints and, where necessary, find appropriate legal support.
“When something goes wrong, when you’ve had some kind of medical treatment, you have lots of questions and you don’t necessarily know where to get answers to those questions,” Cornwell told CodeBlue in an interview on the sidelines of a medical law conference on August 15.
Patients may not even know whether something that happened during their treatment amounted to medical harm or whether they should make a complaint, she said.
An organisation such as AvMA could first give patients an outlet to tell their story and have someone listen, before helping them decide what they wanted to do next.
That could mean seeking an apology or explanation, making a complaint, pursuing remedial treatment, or, in more serious cases, determining whether legal action was appropriate.
“We define a successful resolution as that the patient gets the outcome that they want. So if it’s an apology, they get it. If it’s an explanation, they get it. If it’s a legal case, they win it,” said Cornwell.
AvMA Helps Patients Find Answers, Not Just Lawyers
AvMA is a UK-wide charity that supports people who have suffered avoidable medical harm. Cornwell, who spent four decades working in or around the National Health Service (NHS), said the organisation’s work is not primarily about securing compensation.
It provides self-help guides, a telephone helpline, caseworkers for complex cases, referrals to accredited clinical negligence lawyers, and support with inquests, including referrals for representation and bereavement services.
The patient safety charity does not provide legal representation or medical treatment. Its helpline volunteers, however, have medico-legal training and typically have backgrounds in medicine or law.
AvMA also runs an accreditation scheme for clinical negligence lawyers, allowing patients to be directed to lawyers with relevant expertise and access to appropriate medical experts.
The independent charity helped about 12,000 people in 2025, mostly through its self-help service and helpline, Cornwell said.
A significant proportion of people who contact AvMA have disabilities, including physical disabilities and mental health conditions, she said.
Cornwell said people who are poorer, less educated, from minority ethnic groups, or disabled may face greater difficulty speaking up about medical harm. She also highlighted women whose concerns are overlooked in maternity care.
When Medical Harm Is Followed By ‘Compounded Harm’
For patients who cannot find an independent avenue for answers, turning to the media or social media may seem like the only option. But publicising an experience does not necessarily provide what patients are looking for, Cornwell said.
“It’s not going to get the apology, it’s not going to get the explanation, and it’s not going to help them take it further if that’s what they need to do,” she told CodeBlue.
Cornwell described what can happen afterwards as “compounded harm” – when the original medical injury is followed by a defensive response from the health care system.
“It’s bad enough to have a different outcome from the one that you wanted or expected. Then you find yourself up against a bureaucracy that really doesn’t acknowledge what happened,” she said.
Patients may receive distant responses, be told they do not understand what happened, or feel that their concerns have simply been pushed aside.
Cornwell said many patients ultimately just want an explanation or apology, rather than compensation or a lawsuit.
“The preferred action is not litigation. The starting point is, what does this person say they want and need?” she said. “Many people want an apology, they want an explanation, they want to understand what has happened. That’s all they want.”
‘Martha’s Rule’ Shows Why Patients Need To Be Heard
Cornwell cited the case of 13-year-old Martha Mills, who died in 2021 after developing sepsis following a pancreatic injury sustained in a bicycle accident.
Martha’s parents repeatedly raised concerns about her deteriorating condition while she was being treated at King’s College Hospital in London. A coroner later concluded that Martha would probably have survived had she been transferred to intensive care earlier.
Her case contributed to the introduction of Martha’s Rule in England in 2024, a patient safety initiative that gives patients, families, and carers a route to escalate concerns about a patient’s deteriorating condition and request an urgent review.
Under the initiative, patients and families are asked about their views on a patient’s condition, while staff and families can request a review by another clinical team if they believe the patient is deteriorating and their concerns are not being addressed.
Patients and their families can notice early signs of deterioration that health care professionals may miss, Cornwell said.
AvMA’s role similarly extends beyond helping individual patients, as the stories it collects can highlight systemic problems and inform changes to health care, she said.
“Patients tell us over and over again that just by being listened to by a helpline volunteer or a caseworker or the inquest service, we have brought relief and helped them feel less alone,” Cornwell said.
Demand for AvMA’s services is now exceeding its capacity. Helpline calls increased 7 per cent in the latest year, while requests for advice and information rose 38 per cent and demand for its inquest service increased 27 per cent.
AvMA has yet to determine whether the increase reflects more medical harm, greater public awareness, changes in public support for the NHS after the Covid-19 pandemic, or even artificial intelligence making it easier for people to find the charity online.
The organisation is also working with the Harmed Patients Alliance, a patient-led group advocating for people affected by medical harm, on a “care pathway” for patients who have suffered medical harm, designed to replace defensive responses with compassionate care and accountability.
The pathway calls for patients to be involved in investigations, have access to independent specialist advice where needed, and receive support alongside health care staff involved in incidents.
Cornwell said AvMA is currently looking for hospitals to pilot the pathway.
‘Most People Don’t Know Where To Turn’
Asked how AvMA could establish a presence in Malaysia, Cornwell said the charity was, as far as she was aware, the only organisation of its kind internationally.
Her own family’s experience of medical harm, she said, showed her how difficult it can be for ordinary people to navigate the health care and legal systems.
In 2005, her nephew suffered severe medical harm at birth after being deprived of oxygen during delivery and requiring 18 minutes of resuscitation.
Cornwell said the hospital trust conducted its own investigation without involving his parents, placed the blame on the midwife who had been on duty and denied negligence. Her sister and brother-in-law eventually won a clinical negligence case against the trust in 2010.
“I knew how to find lawyers, good lawyers. I knew that we needed lawyers very quickly. Most people don’t know that when something goes wrong, they really don’t know where to turn,” she said. “So an organisation that can initially signpost them is definitely a model.”
Cornwell said AvMA would be interested in sharing its experience if Malaysia wanted to develop a similar organisation.
“If you have space in your public sector for an organisation such as ours, I’m sure we would be very interested in helping them to learn from our experience.”
