Demos has published a report supporting calls for the NHS to bring in Martha’s Rule, giving patients and their families more power to get a second opinion when they feel they aren’t being heard. It follows the death of 13-year old Martha Mills, who died an avoidable death from a sepsis infection two years ago. Her mother, Merope Mills, gave an interview on the Today programme describing the family’s experience of watching their daughter die in hospital and the breakdown in communication that meant no one listened to their concerns, or even shared the information they needed to advocate for her. Demos has worked with Martha’s family to make the case for Martha’s Rule. Here, we explain how it would work.
What is Martha’s Rule?
A new way for patients and their families to trigger an urgent clinical review from a different team if they are in hospital, are deteriorating rapidly and feel they are not getting the care they need.
Is it the same as a right to a second opinion?
There is no existing legal right to a second opinion and it is not specified in the NHS constitution, which sets out patient rights. The NHS says all patients and families are able to seek a second opinion if they have concerns and that professional guidance for doctors set out that these wishes should be respected. The General Medical Council guidance on good medical practice, followed by all practising doctors, states that they should “respect the patient’s right to seek a second opinion”. But Martha’s Rule is different because in these limited, but urgent circumstances, it not only gives patients the right to ask for a second opinion, but the power to trigger one.
How would it work?
Martha’s Rule goes beyond asking for a second opinion to being able to directly contact an independent clinical review team and ask them to conduct a review of the patient’s condition if they fear they are at risk of deteriorating rapidly and don’t feel their concerns are being heard by the team dealing with them. The review would be conducted by these separate clinical teams and a phone number, or other method to contact them, would be displayed in wards. It’s not just about being able to ask for it to happen, and for doctors to be able to consider it, it’s about being given the power to make it happen.
What is it designed for?
It is designed to save lives and improve patient safety in cases where patients, for whatever reason, feel something is going wrong that the clinical staff aren’t addressing. One in five patient safety incidents come down to a communication problem, and there are many documented examples of cultural failures across the NHS which mean patients are sometimes not properly listened to. This shift in power to patients, giving them this mechanism to get the help they need, is designed to improve patient outcomes.
Who is proposing it?
Merope Mills and Paul Laity, the parents of Martha Mills, who died in 2021 from sepsis after the medics failed to respond to her parents’ concerns and withheld vital information from them. The inquest into her death heard that she would most likely have survived the septic shock that killed her had consultants made a decision to move her into intensive care sooner – she stayed on the ward even though her mother explicitly raised a concern about sepsis. After writing about their story in the Guardian, Martha’s parents were contacted by medics around the world and heard about ‘Ryan’s Rule’ , a similar system in Australia. Some leading hospitals in the UK have already introduced versions of this rule. The cross-party thinktank Demos has worked to support Martha’s parents to develop the ideas for Martha’s Rule in a report.
How would it work in practical terms?
Hospitals have critical care outreach teams on call. These are the senior, experienced teams that ward staff call when they fear a patient is deteriorating – meaning they are becoming at risk of death. Martha’s Rule, based on the existing systems in Australia, America and some UK hospitals, would give patients and their families the ability to call this team directly. Crucially, the ability to do so is to be communicated to them on wards.
What are the remaining challenges?
The main problem is the variation in provision of critical care outreach teams. Many hospitals already have these teams in place, which means that implementing Martha’s Rule is principally about letting patients know they are there. But not even NHS England knows the full coverage of these services in the UK. Some hospitals have them available 24 hours a day, some have partial coverage, while some small hospitals might have none at all. In hospitals that don’t have these teams, they would need to be set up or an alternative on-call system put in place. To enact this, the first thing the NHS needs to establish is the extent of the current provision.
Would it cost money?
There has been rigorous assessment of the system at Royal Berkshire Hospital, Call 4 Concern. Over a seven-year period, 534 calls to C4C were made. The study found the service was being appropriately activated, with only 5% of referrals deemed not to be a C4C. In a fifth of cases (114 patients) significant interventions were required, such as further specialist review and admission to higher levels of care. The remaining referrals related to significant concerns for patients and their families, with the researchers concluding these were important for the “promotion of improvement in safety culture through patient and family empowerment”. They also found 11 calls were actually made by staff on behalf of a relative, demonstrating how C4C had become an established service, accepted by clinical staff.
Is it abused by patients and does it waste doctors’ time?
No. The evidence shows that it is not overused by patients, and that it improves patient outcomes.
Will it be implemented?
The health secretary Steve Barclay has said his team is “exploring” it. Labour’s health shadow Wes Streeting has said: “Labour will write Martha’s Rule into the NHS constitution. Every patient should have the right, and know they have the right, to demand a second opinion.” This is the strongest possible endorsement, and should Labour win the next election, amounts to a commitment to action. However, getting consistent change across the NHS is very difficult and previous attempts to introduce universal systems have failed. Hospitals have a lot of autonomy and need support to implement change. The NHS is obviously also incredibly stretched and the NHS England team that supports system-wide change is under huge pressures. There is political will, but the system needs support to implement the changes.
Does it solve all the problems?
No. Martha’s story also exposed the problems of weekend and holiday working – she died on a bank holiday when staffing is very thin. But Martha’s Rule would give patients and their families more of a chance to intervene before things go drastically wrong when staffing levels are low. It won’t in itself change the pockets of poor culture in the NHS, exposed by successive reports, or make medics trust and value patient input more. But it could nudge them to think differently and ultimately to save lives even when they have doubts. Demos also looked at improving communications by giving patients access to their notes in real time, something that doesn’t happen at the moment, and also enforcing previous government directions for every patient to have a named consultant that hasn’t happened consistently. But by focusing on this one actionable new rule, it not only creates a safety net for families such as Martha’s, but raises the issues of these problems within the NHS overall.