Martin Ledwick, our head information nurse.
Since the COVID-19 virus began to disrupt everyone’s lives, the Cancer Research UK helpline hasn’t stopped ringing.
“We’re an information and support helpline, so we’re here to help people understand what’s happening to them,” says Martin Ledwick, who heads up our information nurse team.
Ledwick says that, even in ‘normal’ times, calls to the helpline can be quite varied, ranging from talking someone through their screening results or the side effects of treatment to questions about warning symptoms someone’s concerned about.
“We don’t really consider ourselves to give advice. We give information, so that people can make their own decisions about things.”
But in the last few weeks, they’ve unsurprisingly received an increasing number of calls about COVID-19.
The changing nature of coronavirus
“It’s risen from about a quarter of our calls in mid-March to around 45% in the last few weeks and now down to about 30%. It’s a very significant issue for people with cancer as well as the general public.”
Ledwick has also noticed the types of questions have changed over time, from initial concern about how people should be taking care of themselves or their relatives, to questions about shielding, then impact on treatment and most recently questions about whether or not to go to their GP if they have symptoms of cancer.
“When the Government started to send out the vulnerability letters to people, we saw a big increase in enquiries about that,” says Ledwick. “And that was either from people who’d received a letter and hadn’t been expecting it and were shocked by that and wanted to talk it through, or sometimes from people who had got a letter and were wondering why because it didn’t seem to fit them and their situation.”
Ledwick says there were also calls from people who hadn’t had a letter and thought they should be shielding. “We were talking through those issues a lot.”
But in the last couple of weeks, things have changed again. “What we’re started to notice now is that we’re getting an increasing number of calls from people who have either had treatment delayed or cancelled. And obviously that’s causing a huge amount of distress.”
Ledwick says it’s particularly challenging given how much we talk about the importance of getting cancer treated early.
“Some people feel like they’re between a rock and a hard place, because if their treatment means that their immunity is worse, it could mean that if they contract coronavirus they’d become extremely unwell, and then the risks of having treatment might actually outweigh the benefits.”
It’s difficult for his team to judge when it would be safe to delay treatment and when it isn’t, but Ledwick says what they can do is talk through why these decisions have been made – and listen.
While the NHS is working hard to continue urgent treatments and find ways to deliver treatment as safely as possible, the impact of coronavirus is being felt by cancer services.
“We are now having more calls from people who are asking about what they should do if they have a symptom of cancer. It’s really important for these people to contact their GP. Even though the coronavirus has caused a lot of disruption, doctors do want to make sure that people with other conditions like cancer get diagnosed and treated as soon as possible”
As well as helping people understand why their treatment might have been delayed, and encouraging those with symptoms to contact their doctor, Ledwick says the team are still here to listen, which is especially important when people are feeling isolated.
“This major pandemic is happening in the world, but cancer patients have something very frightening happening to them already. And that’s something we need to take into account at the moment.”
The people behind the headset
The helpline is staffed by a team of experienced cancer nurses.
And while no-one was expecting the coronavirus outbreak, the team were prepared. After some work last year on crisis recovery, the team were ready to adapt the helpline when offices closed. “We wanted to be in a position where in the blink of an eye we could get the helpline up and running. We were thinking ahead.”
The planning paid off, and the team are all set up at home, taking it in turns to answer people’s calls, reply to questions via email and answer cancer chat posts.
“We work very much as part of a whole. Our main patient information offering is actually the amazing information we have on our website,” says Ledwick. “And the nurse team is there to pick up any questions people may have after looking at that information.”
Ledwick also points to cancer chat, the charity’s online forum where people can get support from one another at any point in their cancer experiences. “Obviously a lot of people on the forum at the moment are having conversations about coronavirus and how that impacts them.”
The key thing for Ledwick is that, unlike many sites, cancer chat is moderated to make sure it’s a safe place for people to have discussions. “Because of this we’re easily able to pick up if someone has perhaps got a misunderstanding or is sharing some information that isn’t appropriate. It’s so important because there’s a lot of misinformation out there.”
While a lot of conversations and calls, have been focused on coronavirus, over half of the helpline calls aren’t. The team are still helping people with screening results, side effects, worrying symptoms and everything in between.
“Despite the fact that we have the coronavirus pandemic going on at the moment, people still have cancer and they still have questions about that too.”
And that’s where Ledwick and our brilliant team of nurses can help.
If you would like to speak to one of our nurses please call them on freephone 0808 800 4040 Monday to Friday.