The recent Patients Association webinar highlighting the invaluable work of the NHS‘s Worry and Concern Collaborative, and the harrowing experiences so bravely shared by patients’ family members, resonated powerfully with me. 

Eighteen months ago, my wonderful Mum became one of the all too many patients who loses their life to a failure to recognise the signs and symptoms of serious illness. Having been admitted with a ruptured vein in her leg, she became acutely unwell during a wait of more than a week for a vascular treatment plan.

The change in her presentation after a week in hospital was rapid, profound and shocking. Despite her 82 years, she was bright, cognitively sharp and mischievous, being scolded on the ward for chatting and laughing into the early hours; overnight, she became confused, pale, drowsy, breathless and had begun to slur her speech.

Sepsis

As a healthcare professional, I recognised immediately the signs and symptoms of potentially serious illness as illustrated by sepsis guidelines and began to report them urgently.

Over the six days that followed I fought desperately to make doctors and nurses acknowledge her continuing deterioration and to realise the gravity of her illness.

I begged them repeatedly to help her, pointing out her symptoms and how they corresponded with clinical guidelines. But my professional knowledge was belittled, my opinion as the daughter who knew her far better than hospital staff ever could, was dismissed.

Distressing

Watching Mum deteriorate and slip away, gasping for breath, was the most traumatic and distressing experience of my life.

It will haunt me forever that I failed her, that my efforts were futile and that I was unable to save her.

Since her untimely passing, I have obtained her medical notes. I was devastated to read that my late Mum herself had raised concerns regarding feeling unwell and being uncharacteristically breathless only to be dismissed, too.

Moving forwards, while nothing can bring her back nor relieve our pain, I am fighting to bring to light the numerous failures in Mum’s care in the hope that lessons are learned and that no other patient suffers as she did. 

I am incredibly grateful to have recently met with and gained the support of my MP, who shares my concerns and is assisting me in working to obtain the thorough, impartial investigation required in the interests of patient safety.

Leadership, cultural change and education will play a pivotal role in ensuring that the changes are implemented and adopted wholeheartedly within the NHS. Family members and carers have so much to offer as members of the multidisciplinary team whose information can assist and support staff in providing truly patient-centred, safe and effective care, particularly given the pressures upon staffing levels which may often lead to a lack of continuity of care.

Martha’s Rule

In Mum’s case, despite my experience as part of an emergency on-call respiratory physiotherapy team in intensive therapy and high dependency units, I felt senior medical staff were more strongly motivated to prove my concerns wrong than to help my clearly suffering Mum. A nurse and ward manager attempted to challenge doctors with evidence of Mum’s deterioration yet they, too, were dismissed. There was no facility to enable them to request a second opinion and they felt unable to make further challenges to senior medical staff.

The work of the NHS‘s Worry and Concern Collaborative and the introduction of Martha’s Rule will be hugely important in enhancing patient safety; affording power and a voice to family members who are best placed to recognise important and sometimes subtle changes in their loved ones will play a huge role in preventing the tragic incidences described in the webinar.

Having the ability to request a second opinion from a critical care outreach team, separate from the treating doctors, may have saved my late Mum’s life. It would most certainly have decreased her suffering and increased her chances of survival.

Watch the recording of the Ensuring patient and family concerns are central to the recognition and management of acute illness and deterioration, webinar held with NHS England’s Worry and Concern Collaborative. Hear from:

John Bamford, Patient Safety Partner, whose adult son Peter died in hospital
Kayleigh Griffiths MBE, member of National Worry and Concern Steering Group, whose baby Pippa died aged one day
Jane Murkin, Deputy Director Safety & Improvement – Nursing, NHS England
Prof Damian Roland, Honorary Professor of Paediatric Emergency Medicine, University of Leicester
John Welch, Consultant Nurse, Critical Care & Critical Care Outreach, University College London Hospitals NHS Foundation Trust.