The parents of a teenage girl who died needlessly in hospital are calling for NHS patients to be given the right to an urgent second opinion, if they feel their concerns are not being taken seriously by medical staff. Martha Mills died after multiple failures in the treatment of her deteriorating condition from sepsis following internal injuries in a cycling accident. A coroner’s inquest found that she could have survived if she had received better care, including timely transfer to the paediatric intensive care unit. During her time at King’s College Hospital, her parents repeatedly expressed their concerns about her condition, such as bleeding and a rash, and raised the possibility of septic shock, but their concerns were dismissed as being overly anxious. The hospital has admitted that there were mistakes in Martha’s care. Investigators criticised the failure to move the child to the paediatric intensive care unit (ICU) sooner as indefensible, given her symptoms which included persistent fever, bleeding from her tubes, extremely low blood pressure and rash. If she had been moved to the ICU, special steps would have been taken to control the infection and she would have received specialist observation and treatment. Martha’s mother recalls expressing her anxiety and trying to find ways to communicate to the hospital staff that something was not right as she became increasingly worried about her daughter’s condition. She found out later that her daughter’s risk of sepsis had been flagged by the nurses and her severe sepsis was known to her doctors who were perplexed by her condition but did not seek help from sepsis specialists within the same hospital. No sense of emergency or gravity was communicated to Martha’s mother until, after a seizure, Martha was finally admitted to intensive care at high risk of death. Despite having done all that she could, Martha’s mother has spoken out about her feelings of regret for having trusted the clinicians against her own instincts. She wishes that she had felt able, “with no fear of being the target of ill-temper or condescension”, to ask for a second opinion from outside her daughter’s healthcare team when she became concerned about her deterioration. Instead, she was left with no choice but to accept what she was being told. Martha’s parents are now calling for NHS hospitals to introduce a system which would give parents, carers and patients the right to call for an urgent second clinical opinion from other experts within the hospital if they have concerns about their loved one’s current care. The proposed system would be known as "Martha's Rule". How would Martha’s Rule work? Systems which allow hospital patients and their families to call directly for a second opinion (escalation) from a separate team of clinicians if they feel they are not being heard or receiving a response have been proven successful in hospitals in areas of the UK and abroad. A system called Condition H(elp), which was developed in Pittsburgh and now operates in various hospitals across the USA, allows patients and their families to summon directly the Rapid Response Team (RRT), using a 911 call within the hospital. Two years after the system was launched the Children’s Hospital of Pittsburgh found that it had responded to 42 calls from patients and parents, all arising from communication breakdowns between the patient or parent and the patient’s doctor or nurse. The system had not been abused by patients and had not led to any significant increase in workload, but had consistently led to better patient outcomes, including at one hospital a significant reduction in cardiac arrests and associated deaths, and increased numbers of patient transfers to higher levels of care, such as intensive care. In addition, it had led to wider benefits as the trends in calls were understood and addressed. In Australia, an escalation process known as ‘Ryan’s Rule’ arose from parents’ concerns being dismissed leading to their son’s death from undiagnosed infection and toxic shock syndrome. Ryan’s Rule allows families to call a dedicated telephone number and ask for a ‘Ryan’s Rule Review’ by a Ryan’s Rule nurse. In 2009, the Royal Berkshire Hospital pioneered a patient escalation scheme called Call 4 Concern or C4C. The scheme allows patients and their families to call or bleep the hospital’s in-house Critical Care Outreach Team at any time of day if they are concerned about a change in the patient’s condition which they feel their care team is not recognising. The scheme is publicised by posters and leaflets around the hospital and on every bedside locker. Reviews show that over a seven-year period, 534 calls to C4C led to significant interventions in a fifth (114) of cases, including further specialist review and admission to higher levels of care, with additional safety benefits resulting from the other referrals. They also found that 11 calls were made by staff on behalf of a patient’s relative, demonstrating how C4C had become an established service and was accepted by clinical staff. The C4C scheme has subsequently been adopted by various other NHS hospitals. These successes have led Martha’s family (via a Demos report) to call for NHS England to introduce into more hospitals ‘Martha’s Rule’, a standardised, system-wide, family or staff-activated rapid response team call out, which would empower patients to voice their concerns and encourage clinicians to listen to them more. If properly implemented, it would enable families or carers to call easily for a rapid review or second opinion from an independent ICU or HDU (high dependency unit) doctor within the same hospital in the event of a suspected deterioration or serious concern on the part of a patient on a hospital ward. Improving patients’ access whilst maintaining doctors’ responsibility Commenting on the circumstances of Martha’s death, an NHS spokesperson is reported to have reiterated that patients and families can seek a second opinion if they have concerns about their care and that doctors’ professional guidance makes clear that it is essential that any patient's wishes for a second opinion are respected. However, countless inquiries and reviews have highlighted the NHS’s inability to address the entrenched cultural problems which so often result in preventable harm to patients. Escalation of the patient’s or parents’ concerns is often made impossible in practical terms by hierarchical professional structures, teamwork and communication failures, confirmation bias, and failure to risk assess, review, recognise and then escalate deterioration in the patient’s condition. We see these problems reflected in fatal and severe injury claims following delayed diagnosis, escalation, senior review and treatment of life-threatening conditions across all specialities, but particularly in time critical treatment of spinal injury/CES, birth injury, meningitis and sepsis. In too many cases, patients and families’ justifiable concerns, questions or challenges are dismissed by the clinicians who are responsible for their loved ones’ care, leaving them shamed into doubting their own instincts or powerless to prevent an evolving catastrophe. Parents want to put their trust in their medical professionals in extreme and life-threatening situations involving their child but often have an intuitive sense of their child's deterioration which a doctor with overlapping responsibilities for multiple patients may not readily see. Feeling powerlessness to challenge decisions or delays which result in serious harm or death to a child leaves parents with feelings of guilt and self-blame, often resulting in psychological injury, when the burden of responsibility was not theirs to carry. The patient’s family can provide vitally important insight to the clinical team about the patient’s medical history, but nothing should take the place of adequate medical examinations, investigations to rule out differential diagnoses, risk assessments and treatment plans, all of which should be kept under review and be flexible enough to change or be escalated in response to changes in the patient’s condition. Alongside the clinicians’ responsibilities, having a well-publicised, standardised means to call independently for a second opinion would provide parents and partners with a way to raise serious concerns and have them considered, without confrontation, and whilst bypassing many of the hierarchical or cultural barriers to escalation or review. But it is also vitally important that escalation is not perceived primarily as the patient, parent or family’s responsibility and that the duty to review, continually risk assess, escalate and correctly manage the patient’s deteriorating condition remains with the healthcare team. The aim must be to facilitate patients’ families’ access to a second opinion, rather than shift the responsibility for taking action from the doctor to the family or patient. Correct and timely care is the doctor’s responsibility and cannot be left, particularly in times of staffing and workforce shortages, to the patient’s family. What happens next? The Parliamentary and Health Service Ombudsman (PHSO) and patient safety charities, such as Healthwatch, have expressed their support for the proposed introduction of Martha’s Rule in hospitals in England. The Secretary of State for Health and Social Care, Steve Barclay, has indicated that the government intends to consider the proposals. If you have suffered severe injury as a result of medical negligence or have been contacted by HSIB/HSSIB/MNSI/CQC or NHS Resolution, you can talk to a solicitor, free and confidentially, for advice about how to respond or make a claim by contacting us.
