“I just felt so helpless”: How Covid has affected cancer patients in Gloucestershire
- Alice Knight
- Jul 24, 2022
- 7 min read
The pandemic has had a significant impact on cancer patients in the UK and cancer services have had to adapt to ensure safe care continuity. As we return to "normalcy," we reflect on the lessons learned and the pandemic's impact on cancer services.
“It was very lonely because you've just been through something major like that. There's just nobody around that you could cry with.”
Marion Simmonds was first diagnosed with breast cancer in December 2017 during a routine mammogram. The 64-year-old from Gloucester went through multiple lumpectomies and six weeks' worth of radiotherapy.
Unfortunately, Marion's cancer returned in December 2019, and she underwent breast removal and reconstruction surgery at hospital three months later. Coinciding with the beginning of the pandemic and the worst health crisis in the UK’s modern history.
“I didn't think I'd get through it. To be honest, I thought I wasn't going to come back. Whether that was Covid or not, I don't know.”
According to Macmillan, one in every six patients (17%) who have been forced to attend treatment alone against their will.
When Marion emerged from surgery, she discovered that the UK had entered the PPE stage of the pandemic with nurses covered head to toe with medical gowns and face shields.
“I just freaked out. “Oh, what's going on? Why are they all dressed like this?” And I was thinking, “Oh, my God, it's gotten worse.” And the nurse said, “It's okay, just calm down. We've had the new rule that we all have to put the whole lot on now.’”
“I was really worried, I was very vulnerable because I've just been through major, major surgery. People coming and going all the time, checking on me, and it was quite scary, to be honest, and not having anybody there.”
After the surgery, Marion’s first physiotherapy appointment was cancelled, and in June, her breast cancer exercise group was cancelled, with all her appointments being moved online.
Because of the pandemic, most NHS services were moved online, and by 27th May, 99% of practices in England were using video consultations for appointments.
Marion says she feels like she’s been overlooked and that her cancer treatment has been negatively affected by the pandemic, where zoom calls were “hopeless” and emails with physio instructions weren't helpful.
Michelle Mitchell, chief executive of Cancer Research UK, has recently warned the UK is now in danger of going backward in terms of cancer survival for the first time in 40 years.
A report by the National Audit Office said between 35,000 and 60,000 fewer people started treatment for cancer later than expected.
I received data from Gloucestershire NHS Trust using Freedom of Information requests, and it shows that the number of cancer patients experiencing delays in seeing specialists for the first time after diagnosis, as well as starting treatment, has reached a new high in Gloucestershire amid fears that overstretched NHS services can no longer provide prompt care.
In 2021/22, 20% of all first cancer appointments in Gloucestershire Hospitals were cancelled within the first two weeks of diagnosis. This percentage has remained consistent since 2017/18 when it was also 20%.
Joanne Sutherland from Charlie’s Cancer Care in Gloucester, said: “A lot of cancer patients were forgotten within the pandemic. We fully understand how important the pandemic was and how people needed to be supported through that.”
“But I think a lot of people have been misdiagnosed during the time of Covid, I think appointments have been dropped, I think people have gone off the radar.”
“We know that from the conversations that people have here, that their appointments are only just catching up with themselves. Unfortunately for some people, that's too late. We did lose quite a lot of members when their journey with cancer could’ve been different, had we not had Covid.”
“It’s quite frightening. We say to them “have you got this or have you spoken about this or have you asked that”, so we can signpost people. During Covid we weren’t able to do that because people weren’t telling us all of their issues and their problems, so you have a huge gap there.”
A spokesperson from Gloucestershire Hospitals, said: “Our cancer team is incredibly proud of what they have achieved throughout the pandemic.
"When the country went into lockdown and stopped, they came into work and faced Covid head-on so that patients could receive care.”
In more FOI figures released by Gloucestershire Hospitals, there were still 58 cancer patients who experienced delays that exceeded national cancer treatment waiting targets set by the NHS in 2021/22.
However, there have been some successes in Gloucestershire's cancer care.
In December 2021, 92% of patients with suspected cancer were seen within two weeks of referral.
During the first lockdown, Gloucestershire Hospitals were able to resume cancer care in June 2020 by separating services caring for Covid and non-Covid patients.
According to data from Gloucestershire NHS Hospitals, only 5% of cancer surgeries were cancelled in 2021/22. But, this figure has risen by 4% since 2017/18, with 73 more cancer operations being cancelled in 2021/22.
The spokesperson from Gloucestershire Hospitals also said: “We purposefully designed our hospitals so that we could continue to perform life-saving surgery. This is reflected in the statistics which show that cancellations at our hospitals remained relatively low, particularly compared to other areas."
"We’re also proud that our two-week referral to treatment remains very high and is one of the best in the region.”
Cancer patients have found themselves in a uniquely difficult and sometimes frightening position since the coronavirus crisis began. Some have called the impact of cancer patients and services the "silent pandemic."
Charity director Joanne said: “We’re tending to pick a lot of people up who also have mental health issues because of the pandemic, their cancer journey, and what they've been through. Sometimes we’re at complete capacity.”
“I know the NHS is stretched, they can't do everything and be everywhere but I just hope at some stage it catches up with itself. I know it's not just the cancer services. It’s not just cancer, it’s every kind of support system within the hospital.”
Charlie's cancer care, which celebrated its eighth anniversary last week, now has an app and a Facebook group with around 2,000 members. The charity focuses on relaxation and mindfulness, they offer classes on meditation, Reiki, lymphatic drainage, and art classes.
“The predominant reason why people come here is cancer. But that’s often not why they return. A lot of our people are lonely. I think the communities aren’t what they used to be.”
“They want to be part of something, and they make friends with people here, and then they see people out of here. It’s not just what happens here, it's what happens on the wider scale.”
When the pandemic hit, Joanne and her colleagues felt helpless, transferring all of their sessions to Zoom and hoping that their cancer support groups would still find solace online.
“We put everything we could online. We did art classes, we did meditation and relaxation, we did all of our positive affirmations.”
“We sent out little things in the post to people just to let them know that we were thinking about them. Because not everyone accesses the services online but we put as much as we could online.”
After closing their doors in March 2020, it took until January 2021 for all of their services to be fully operational again, with temperature checks, regular cleaning, and mask-wearing required to stay that way.
Since the start of the pandemic, the total number of people starting cancer treatment in England has remained 40,000 lower than expected.
Addressing this backlog will be difficult – according recent Macmillan analysis, to catch up on missed cancer diagnoses and clear the cancer treatment backlog, the NHS England would need to operate at 110% capacity for 17 months.
The NHS has recently launched a consultation on new cancer standards, which could see the two-week wait target replaced, to ensure faster diagnosis and treatment for cancer.
The new standards would prioritise the time between referral and diagnosis over the time between referral and seeing a specialist. According to the new plan, 75% of patients must receive a clear answer on their cancer status within 28 days.
Health Secretary, Sajid Javid said: “These proposals will help us speed up diagnosis times and treatment, and save more lives.”
Marion's first week after her surgery in March 2020 was the most difficult part of her cancer journey.
“I remember one of the alarming things was when I was trying to get hold of the plastics nurse. I rang down to Bristol and I just got a message on their answering machine saying, “I’m sorry, we're not taking calls at the moment. Please ring your GP.”
“I was beside myself, because my GP, as far as I was concerned, didn't know anything that I've gone through. I needed to speak to the team that worked on me. But they just weren't taking calls and to get a message like that. It was like hang on a minute -it felt like I'd been dumped.”
“Obviously priorities were required elsewhere, which I absolutely understand. But when you’ve been through a major operation and you get an answer machine message saying something like that. I was beside myself. I did not know what to do because I was frightened. It was just so abrupt and I just felt so helpless.”
At the peak of the UK’s first wave, 400 specialist cancer staff working for Macmillan, were redeployed to coronavirus response teams.
Marion has been in remission since January 2021, has yearly mammograms, and can reach out to her cancer nurse at any time. But the chaos caused by the pandemic has had a huge impact on her emotional wellbeing.
“I think I would have dealt with it a lot differently. When I came out of the hospital, I couldn't see my friends. I couldn't see my family. Everything was all zoom, and because you haven't had the people with you along that journey. They don't know what you've been through.”
“Nobody saw the struggle afterwards. And so they can't understand what you've been through. They haven't got the empathy there because they just don't know.”
“Charlie's wasn't available. There was just nobody to talk to. So I just got on with it and bottled a lot of it. And I say 18 months down the line when everything started to get a little bit back to normal. It all hit me at once.”
“I did have a real wobble, I had to go to Maggie's for some counselling because I think I had post-traumatic distress order from everything I've gone through, as I started reflecting on what I've been through. And it just hit me like a ton of bricks.”
“The first time I had breast cancer, there were all the courses available through Macmillan. This time there was no support at all. That was all taken away because of Covid.”
You can read more about cancer signs and symptoms on the NHS website.
Some places to contact for support include: Macmillan Cancer Support, Cancer Research UK and Marie Curie.
If you’re interested in participating in the NHS's cancer consultation you can do so through their website or by emailing england.reviewofstandards@nhs.net.
Dedicated with love to Sharon Swain and Anthony Swain.
Originally written for a university assignment in Feb/March 2022
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