Martha's Rule - a major step for patient partnership

Today, in a major step for patient-centred care, Martha's Rule will be implemented initially in 100 NHS sites across England beginning in April 2024. 

On behalf of the Patients Association, I want to thank Martha’s parents for their amazing campaigning and this achievement, but as Martha’s mother said on Radio Four this morning, there is a long way to go to have universal implementation of Martha’s Rule across the NHS. 

The tragic death of 13-year-old Martha Mills from sepsis in 2021 catalysed this campaign. Despite her family voicing concerns about Martha's deteriorating status, their alerts went unheeded until it was too late. A coroner ruled Martha would likely have survived had she received timely intensive care.  

The Patients Association is honoured to be a member of the Martha’s Rule working group chaired by the Patient Safety Commissioner as we see this rule embodies powerfully our principles of patient partnership. 

Treating patients as equals: Too often there exists an institutional hierarchy where the medical professional's voice is believed and prioritised over the patient's own knowledge and experience. We hear too often that the patient’s and family’s voices are not listened or heard as is highlighted in our General Election Manifesto about genuine two way communication. 

Patients who are fully informed: For true shared decision-making, patients must understand all aspects of their care and have mechanisms to raise concerns. Martha's Rule provides a means of putting power in the hands of patients and their families to be able to call for an urgent review. 

Shared decision-making and patient partnership:  One of the success criteria that we will want to see from Martha’s Rule is that the healthcare system constantly values the voice of patients and families and that their experience is valued and not undermined. Real partnership will mean that healthcare professionals will collaborate with and listen to patients and those closest to them. 

Recognising inequalities: Listening to Martha’s mother this morning was heart-breaking and the pain that her and her family have gone through is evident and should not have happened.  This pain is felt by many families across the country who have experienced an avoidable death. For Martha’s Rule to be successful for everyone, we need to recognise health literacy and ensure that those at risk of inequalities are recognised by NHS trusts and that there is genuine two way communication through a variety of ways to ensure that all families know about and can access Martha’s Rule. 

Seeking patient input: The creation of Martha's Rule itself models the importance of incorporating the patient perspective to prevent preventable deaths. 

Joining services around patients: Critically, Martha's Rule facilitates coordination between staff, critical care teams, patients, and families - aligning all aspects of care around the patient. 

As the policy expands in future years, embedding these principles of patient partnership across the entire healthcare system means it can transform outcomes and experiences for the better. No family should have to suffer what Martha's family or the many families who have also experienced avoidable deaths within the NHS, have suffered. 

Rachel Power, Chief Executive