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The lessons and inspiration of Dame Deborah James

The highlight of last month's annual QNI meeting the final session by QNI Chair, Professor John Unsworth interviewing Heather James, mother of Dame Deborah James, known as BowelBabe, the extraordinary campaign to raise awareness of bowel cancer

On 27 March the QNI held its largest ever annual Queen’s Nurse meeting. More than 520 QNs joined the virtual conference, representing 25% of our total community of QNs.

The host of fabulous, inspirational speakers throughout the day was concluded with the final session by QNI Chair, Professor John Unsworth interviewing Heather James, mother of Dame Deborah James, known as BowelBabe. 

Heather spoke about Deborah’s childhood, her successful career as a teacher, and her journey after her diagnosis of bowel cancer as a young woman and a mother of two young children.

Heather helped all of us listening to understand the perspective of being a mother supporting her adult daughter through the rollercoaster of the diagnosis and treatment, then assurance of being clear of any visible signs of cancer through to the recurrence of cancer and End of Life care. 

It was hard to hear the accounts of when the district nursing care at home did not go according to the plan agreed with Deborah. Some of the actions Heather needed to take to support Deborah’s care seemed incomprehensible to us, such as having to order sterile dressing pads online for the leaking sites of the two liver drains – because none were available from the GP or from the nursing team.

Similarly there was no patient choice for the day that the profile bed was to be delivered. Despite Deborah and Heather’s best efforts to delay the delivery for three days, allowing Deborah’s children to welcome their mummy home after a long spell in hospital (where they had been unable to visit).  It was devastating to have a profile bed as a symbol of what was to come, when all they wanted was a sense of normality in the home for one last weekend.

In fact, Deborah did not use the bed for a further eight weeks, naming it her ‘deathbed’ and covering it with blankets and cushions to disguise its presence. It made all of us think about the rhetoric of personalised care, and the reality – from the patient, family and carer perspective.

We were left thinking too about the flexibility and responsiveness needed in all nursing teams to learn new or to refresh existing technical skills to meet patients’ needs, such as flushing liver drains, when the skills were not a part of our previous training. Ensuring the right nurse with the right skills is in place at the right time for the people we serve is a commitment of the QNI’s policy influencing work.

Heather is a remarkable mother of a remarkable daughter. This is Deborah’s legacy and I urge you to share her final message: ‘Find a life worth enjoying; take risks; love deeply; have no regrets; and always, always have rebellious hope. And finally, check your poo—it could just save your life.’

Dr Crystal Oldman, Chief Executive, Queen's Nursing Institute