Running a cancer helpline in COVID-19: two years on the virtual frontline – Cancer Research UK

A picture of CRUK's Head Information Nurse Martin Ledwick

It was around 8.30pm on March 23, 2020 when the heart-sinking notification popped up on my phone,” Martin Ledwick, Cancer Research UK’s Head Information Nurse recalls.

“PM Boris Johnson announces country-wide lockdown. For myself and my team of nurses, this meant taking our cancer helpline home. Little did we know the challenges that the following months would bring.”

The story is a familiar one for many: today marks the two-year anniversary of the UK entering COVID-19 lockdown for the first time. For most people, that meant limited time outside and working from home – the same was true for the charity’s cancer nurses.

What happened to the helpline in March 2020?

Cancer Research UK has been running its helpline for the length of the charity’s 20-year life. The service runs from Monday to Friday 9am-5pm, offering help and advice to anyone who is worried about cancer, be it a patient, a family member or someone who thinks they might have symptoms.

At the best of times, it’s busy.

But in March 2020, the phones didn’t stop ringing.

What have we seen?

  • During the first month of lockdown, there was a 40% increase in calls to the helpline – 45% of which were related to COVID-19 and how it would affect cancer care.
  • Almost 120,000 people visited the COVID-19 section of the CRUK website in April 2020.
  • Over 1,000,000 people have visited Cancer Research UK’s COVID-19 pages since March 2020.

“A brand new, deadly virus is enough to make the healthiest person anxious,” Martin explains. “But if you already have cancer, and you are immunocompromised because of the treatment you’ve been receiving, the fear for many was unimaginable.”

From March 2020, NHS staff made impossible decisions to cancel chemotherapy and postpone potentially life-saving operations. Screening services were ground to a halt and specialist equipment was redirected to the COVID-19 front line. ‘Stay at home’ was the law and difficult but necessary actions were taken by NHS staff to keep patients safe while we processed exactly what COVID-19 was and how big a threat it posed.

The impact of the measures taken during the pandemic on cancer care are only beginning to be understood.

The most recent data available shows that the number of cancer patients who would have been diagnosed quicker or started their treatment sooner has jumped from just over 12,000 in 2019 to well over 23,000 in 2021. Cancer waiting times are at their worst ever, with 11 times more people waiting six weeks or more for key diagnostic tests in England at the end of January 2022 compared with January 2019.

What did this mean for the nurses?

After two decades of finding solutions for people affected by cancer, the calls being answered by CRUK’s nurses changed dramatically.

“We couldn’t help people get their treatments restarted or tell them when that would happen,” Martin explains.

“We could simply listen to them, explain why their treatment was paused and give much-needed emotional support.”

“The saddest story was a caller who was suffering from pancreatic cancer – one of the fastest-moving and deadliest cancer types. They were due to have potentially life-saving surgery, but almost overnight, this procedure had been cancelled because there were no intensive care beds available.”

In March 2020, heart-wrenching stories like this became a daily occurrence. Cancer Research UK’s nurses were on the virtual front line, expected to know the answers and offer support in a period of the great unknown.

How did the staff cope?

The nurses remained well looked after during the pandemic. If anyone had to deal with a difficult call or was struggling with a query, the policy was: take off your headset and tell someone. They had clinical supervision and meetings at the beginning and end of every day to make sure everyone was doing OK.

But Martin explains that during the first few months of lockdown, an overwhelming feeling was that of guilt.

“It was like the country was at war and, despite having the relevant training, we hadn’t been called up,” he says.

“We thought: shouldn’t we be doing more? In fact, many of us did volunteer to help, but the truth is that the work we were already doing at Cancer Research UK was the most valuable use of our time.”

How does it feel, two years on?

“Today, when I switch on my phone, the notifications are thankfully no longer about COVID-19 restrictions, but the consequences of the pandemic on cancer care are yet to be fully understood,” Martin says.

The NHS in England has failed to achieve the standard of 85% of patients in England having their first definitive cancer treatment within 2 months of an urgent suspected cancer referral for six years running. While the Health Secretary’s ambitious 10-Year-Plan is welcome, there is a very long way to go to get cancer care back on track after the set back of the pandemic.

“The vaccination programme is proof that a properly funded and staffed project can have fantastic results, and the NHS needs sustained resources and support in a post-pandemic world,” Martin says.

“Celebrating Cancer Research UK’s 20th anniversary while simultaneously looking back on the horrors of the last two years prompts a strange mix of emotions. For me, the whirlwind that was the start of the pandemic feels like a lifetime ago. But my job remains the same as it has for the last 17 years: support people affected by or worried about cancer in any way that we can.”

If you would like to speak to one of our nurses please call them on freephone 0808 800 4040 Monday to Friday.

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