‘My dad was sent home with a DNR after losing his appetite - within weeks he was dead'

Amelia's dad John
-Credit: (Image: Amelia Robinson)


Amid the global pandemic, Amelia Robinson and her family were facing an entirely different devastating reality when her dad, John, started feeling out of sorts at the start of the year. His family noticed he had lost his appetite by March, which was “really worrying” as it was out of character.

Unfortunately, as there were few other symptoms it took until June forhim to have an endoscopy. It was here that he was diagnosed with kidney cancer, news that was delivered over a 2 metre distance due to Covid protocols.

Amelia recalled: “From the beginning, it was clear the cancer was advanced. At 77, his age, along with the weight loss, made things even more concerning for me and my family.”

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Unsure of where to turn, Amelia was “desperate for support” when she came across Kidney Cancer UK who she claims “were the only ones offering us the help we needed” in terms of mental health support during this incredibly trying time.

Shortly after his diagnosis, a CT scan showed blood clots in his lungs and John’s condition quickly began to deteriorate. Amelia shared: “Without us knowing, my dad was urgently called into A&E, where he was told there was nothing more the doctors could do. He was sent home with a ‘Do Not Resuscitate’ order.”

She said the way the news was delivered as “shockingly unsupportive”, adding: “It breaks my heart that my dad didn’t receive the support he deserved at such a critical time.” Admittedly she knows it was likely due to the chaos of the pandemic, but Amelia shared her disbelief at the “inadequate support for the elderly with cancer”.

The South Oxfordshire resident moved into hospital in September, after Amelia fought to avoid sending him to an elderly care home due to his health. John died just a month later.

After his death, Amelia and her family continued to receive support from the charity. She said: “Their support saved my mental health. They provided me not just with emotional support, but also practical advice on how to care for a loved one with terminal cancer. Whether you’re the patient, a carer, or a loved one - please reach out to Kidney Cancer UK.

“It’s easy to feel like your worries don’t matter because you’re not the one with the terminal disease, but as a carer, your mental health is just as important. Talking about your concerns is vital. A problem shared really is a problem halved.”

While Amelia praised the individuals in the NHS that cared for her dad, she said the system as whole let him down. She said: “The information I received from Kidney Cancer UK's support line was far more detailed and helpful than what I got from any of the nurses.”

Unfortunately, she’s not alone as a Kidney Cancer UK’s report revealed a divide between patients and healthcare professionals around mental health of patients and their families. From the charity’s annual survey, the report found more than a third of cancer patients were unhappy with how they were informed of their diagnosis and 30% weren’t told the name of their Clinical Nurse Specialist. Of those that received further NHS treatment, 29% recalled feeling abandoned after surgery too.

An NHS spokesperson told Reach: “A cancer diagnosis can have a significant impact on people’s mental health and it’s vital that patients receive support that suits their needs, which is why the NHS has worked with leading charities to develop recommendations and resources for local services to help improve the mental health support available to people affected by cancer. There is more to do, and Cancer Alliances are now leading work to better understand and improve the support available for patients’ mental health locally in partnership with charities and NHS providers”.