It’s my daughter Martha’s 16th birthday today. For some time I’ve wondered what she’d want: would the annual escape room still excite her? What new books would be on her list? Would she still ask for her favourite roast chicken as a birthday meal? What film would she choose for us to hunker down and watch this evening – or would she now rather go out with friends?
Everyday questions, but ones I’ll never be able to answer, because Martha died two years ago, after a series of unforgivable hospital errors. I’ve written in detail in the Guardian about what happened to her but, in short, Martha injured her pancreas after she fell off her bike on a safe family trail. She should have recovered but contracted an infection at King’s College hospital, London. The team of doctors on Rays of Sunshine ward failed to escalate her to paediatric ICU, even though they knew she had severe sepsis and when blood was soaking her sheets; she had a high heart rate, a fever and fast breathing.
When the August bank holiday approached, my husband and I imagined the worst, and told the doctors we were worried Martha would go into septic shock over the long weekend, when the ward was quiet and the consultants were at home, on call. We were reassured time and again it was “just a normal infection”. On Sunday, the consultants discussed Martha’s severe sepsis among themselves. She had very low blood pressure and, later, a rash, which the registrar misdiagnosed: against all common sense and ignoring my opinion, he concluded it wasn’t caused by sepsis. I had no one to turn to.
Although Martha met all the criteria for immediate escalation to ICU, she stayed on the ward. Unbelievably, the duty consultant, at home, who had failed to draw up a plan for her care that day, said “categorically” that a potentially life-saving bedside visit from a member of ICU shouldn’t happen – it would increase my anxiety. No doctor visited Martha overnight and after she began to go into septic shock, no recovery was possible.
During the time Martha was in hospital we never left her side. No consultant had overall care of her, and, given that the senior doctors felt no need to document her condition, we were the only ones alert to her trends. Every day, when a different consultant visited on the ward round, we asked questions; we were articulate, grateful and trusting. But it turned out that the King’s doctors never gave us the full picture; they never used the term “sepsis” when talking to us, and withheld information about other serious symptoms. We were given limited information – in retrospect this feels like a form of control. Even if it were argued that the consultants kept us in the dark to stop us worrying, the result is that they took away any agency we had in demanding the appropriate care for our child.
If I’d been given more detail about Martha’s deterioration, I’d have spent every waking minute trying to educate myself about sepsis and septic shock. Is it too cynical to suggest that this is exactly what these doctors didn’t want – an over-involved, Googling mother, who might make a fuss on the ward and challenge them? There are many NHS initiatives about listening to patients and their families, but we were still condescended to and “managed”, with fatal consequences for Martha. Even though much was kept from me, I knew – and Martha knew – that things were going badly wrong.
The NHS saves innumerable lives, and I know wonderful medics, who are expert at listening and who involve the testimony of patients and families in their diagnoses. But there are also doctors, like the team on Rays of Sunshine ward that treated Martha, who operate in a culture dominated by hierarchy, status and overconfidence. One lesson from Martha’s story is that more agency on the part of patients to challenge this culture would make our healthcare system safer. When you are in hospital you feel powerless, and everyone knows that questioning senior medics is daunting. So it’s important to make asking for a second opinion easier.
We’d like to see Martha’s Rule introduced across the UK hospital system. This initiative would effectively formalise the process of asking for a second opinion from a different team (usually critical care or ICU) when a patient, or a family member or carer, is anxious that deterioration isn’t getting an adequate response. Martha’s Rule is essentially a “patient and family activated escalation system”– one that, in a crisis, would enable patients to have their voices more clearly heard.
One argument against such a policy – and I can hear the objections of medics now – is that patients would overuse it (“They’d call it all the time and the system would be overwhelmed”). But versions of Martha’s Rule already exist in hospitals around the world and the opposite has proved to be the case.
In Queensland, Australia, Ryan’s Rule was introduced when Ryan Saunders died after his parents’ concerns were ignored; now families can call a dedicated phone number and ask for a review if they are worried. At the University of Pittsburgh Medical Center, patients can directly summon a rapid response team using an in-hospital 911 call. In the UK, Royal Berkshire NHS trust has pioneered a system, Call 4 Concern, which allows patients and relatives to contact critical care outreach if they are worried that a deterioration is not being recognised.
In every case, the system has been used appropriately, frequently saving lives. To argue that such an initiative would be abused is just another way of patronising patients. Good doctors should welcome input from patients or their family members – they are, after all, the other experts in the room. And doctors, however grand or experienced, should welcome a second opinion from a colleague of any rank.
Since Martha died, I have become aware of other cases where patients or their families felt ignored – such as that of Evan Nathan Smith, who called 999 from his hospital bed, thinking it was the only way to get the help he needed. He died.
At one time I would have read such a story and assumed it could never affect me or my healthy family. Aside from giving birth, I had never stayed on a ward and knew little about how things worked. But my frames of reference have all now changed. You, or someone you love, will be in hospital at some point in your life. When that happens, you’ll need some patient power. You’ll need to know there’s a lever you can pull if things go wrong and no one is listening.
Merope Mills is a Guardian executive editor
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