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NHS diaries: ‘It’s like Groundhog Day, we just wait for the phone to ring’  

by Katie Roberts | Analysis

13 September 2019

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Photo of Neil, who was diagnosed with penile cancer in 2014
Neil has had to wait longer and longer for scan results since since being diagnosed with penile cancer in 2014.

Waiting to hear if you have cancer, or if your cancer has come back, can be an extremely stressful time – especially if the results take weeks to come back. Neil, from Bristol, tells us what it’s been like for him to wait for scan results. 

“Going for a scan is like a wavy line really – you get more and more apprehensive the nearer you get to the scan date because you’re worrying what they’ll find.”

Neil’s anxiety usually starts to come down after the scan, knowing the results are imminent. But that wasn’t the case earlier this year.

Diagnosed with penile cancer 5 years ago, Neil went to see his consultant in June when he developed severe pain in his abdomen. His doctor immediately ordered a scan to see if the pain meant his cancer had come back or spread. But getting the results was nowhere near as quick.

“We waited 5 weeks to hear the results and every day we were just in limbo. You try and put it to the back of your mind but it’s impossible really.”

This isn’t the first time Neil’s had to wait for results. Last year, he had a similar scare. His consultant was quick to order a scan, but Neil had to wait over a month to hear the results.

“I was constantly phoning the hospital. In the end my consultant’s secretary pulled some strings to get the results, or it would have been longer.”

Both delays have been put down to NHS staff shortages.

“They told me there’s a shortage of the people who report the scan results and send them back to the consultants.” Neil was told the backlog was so big that urgent scans were taking 4 weeks to get through.

“You’re waiting for someone to give you what could be the worst news possible, for a month or longer. It doesn’t matter if it’s you’re first scan or if it’s recurring like me, that’s a long time in anyone’s life to find out if you have cancer.”

‘This is my life’

Neil with his wife, Amanda.

Neil with his wife, Amanda.

Neil’s experiences of the NHS in the last year are worlds apart from when he was told he had cancer in 2014.

“When I first diagnosed, it was very quick.” Neil went to the GP after noticing a rash on his penis. The first doctor he saw gave him some cream to try and clear the symptoms, but when it didn’t work, Neil made another appointment.

“The GP took another look and referred me to hospital. I was called into hospital within a couple of days and they told me there and then, before I’d had any scans, that it was penile cancer.” Neil was sent for scans to confirm the diagnosis and 3 weeks later he had his first operation.

It’s been the first of many surgeries, culminating in a full penis amputation when his cancer came back in 2017.

Since then, scans have become even more important. “It’s the only way they can see if the cancer has come back or spread. When it was in the penis, they could see it but now the only way to see it is through the scans.”

He says it’s never easy to hear the cancer may be back. But the waiting makes it so much harder, for him and his family.

“It’s like Groundhog Day every day, we just wait for the phone to ring. And you’re badgering the consultant for results. You feel bad for doing it, and you know you’re not the only one, but this is my life.”

Neil says the treatment he’s received so far has been first class, but his faith in the system is slipping. “When you wait so long for results you feel extremely let down that you’re losing that time. If it’s bad news you feel like you could have had a head start on treatment. And that’s your worry, that you’re potentially giving cancer another head start on you.”

Fortunately, Neil’s scans results came back in August and showed no sign the cancer had come back. He’s having follow up tests now and will continue to be monitored by his consultant. Which will mean more scans in the future.

Enough is enough

Right now, 1 in 10 NHS diagnostic staff jobs are vacant in England. And with more and more patients being diagnosed with cancer, the demand for scans is only going to increase.

It’s in the hands of the Government to make sure the NHS has enough cancer staff, so everyone who’s diagnosed with cancer has the best chance of survival. And time is running out.

“The staff are amazing in the NHS, you won’t find more dedicated people anywhere else in the world. But they’re so overworked. The system is close to breaking.”

>> Join us in telling the Government that enough is enough with NHS staff shortages