Merope Mills and Paul Laity, the parents of Martha Mills who died in August 2021, aged 13, at King’s College hospital in London, have spent the past two years struggling to come to terms not only with the loss of a beloved child, but with the knowledge that her death could probably have been prevented. Martha would have had a much higher chance of survival if doctors had moved her off the Ray of Sunshine ward, where an injury to her pancreas was being treated after she fell from a bicycle, and into paediatric intensive care where a bed was available. That this didn’t happen is something they will always have to live with.
Ms Mills, a senior Guardian editor, and Mr Laity, are now lobbying for Martha’s Rule, a legislative reform that would create an entitlement to a second opinion in situations where relatives are concerned that a patient in hospital is not getting better. Like other campaigners bereaved in situations where institutions are at fault, Martha’s parents want something good to come out of their tragedy. The kernel of their proposal is to boost patient power, by obliging the NHS to set up and promote a mechanism whereby families can seek expertise from elsewhere in a hospital, such as a critical care team, if they are worried that treatment is not going well.
A similar scheme already operates at the Royal Berkshire NHS Trust, and there are examples in other countries. Evidence suggests that such systems improve clinical outcomes. While theoretically, the conditions already exist in the NHS for a second opinion to be sought, the reality highlighted in a report from the thinktank Demos is that the culture in many hospitals makes this difficult. In particular, the aura of infallibility surrounding senior doctors deters junior staff as well as the public from challenging their decisions.
The dynamic between healthcare staff, patients and families is, as the report says, “delicate and difficult”. Patients are disempowered when respect for professionals tips into deference. This can happen all too easily when people are desperate to be helped, and staff should be aware of this. More emphasis should be placed on communication, and particularly listening, in medical training. Trust should be earned and not taken for granted.
Martha’s Rule on its own won’t fix all the problems with patient safety. These are deep-seated and require sustained attention from policymakers, and possibly changes to the way our health system is regulated. The duty of candour imposed a decade ago – in an effort to promote truth-telling when serious errors have occurred, and put a stop to defensive obfuscation – has unsurprisingly not proved to be a panacea. Severe workforce shortages also create unnecessary risks. These were not a factor in Martha’s care, as the Ray of Sunshine ward was well-resourced. But a mechanism for increased oversight of patients can only work effectively where sufficient staff, including experienced staff, are employed to implement it.
What Martha’s Rule would do is send an important signal, and place a new tool in the hands of patients and their advocates. It should be possible to find a consensus around the need to act on the failings identified in this case, that go beyond the sequence of events that resulted in her death at King’s. The positive initial response from both the government and Labour is a promising indication that Ms Mills and Mr Laity are being heard.
