Deborah James: We must stop cancer becoming Britain’s next crisis

Cancelled surgeries, delayed treatments, fewer screenings… the side effects of the pandemic have been catastrophic for many patients. Deborah James, who has incurable bowel cancer, asks where do we go from here?

Illustration: Nathalie Lees.

In June last year, my amazing friend Kelly Smith died. She had stage four bowel cancer, like me, and her treatment had been paused at the start of the first lockdown in March.

Kelly knew she wasn’t going to live for ever. She knew she couldn’t be cured. But she was 31, with a five-year-old son, Finn. She wasn’t ready to give up.

Kelly was angry that coronavirus had delayed her treatment for six weeks, halfway through a cycle, and terrified that it would reduce the precious time she had left. She was right to be concerned. Tragically, her cancer accelerated so rapidly there was little doctors could do.

Kelly, who was buried in a pink, glittery coffin she had chosen two years previously, is just one of many – possibly thousands – of people with cancer who had their lives cruelly cut short over the past year. They are collateral damage in the Covid outbreak which has overtaken our hospital wards and diverted doctors to the front line.

Heathcliff O’Malley/Camera Press

Surgery has been cancelled, treatments postponed and screenings all but stopped. Following the first lockdown last year, scientists estimated the delays could cause 35,000 excess deaths from cancer within a year. In the first two weeks of 2021 alone, an estimated 800 cancer surgeries were delayed, according to provisional data seen by the Health Service Journal.

I was invited as a guest on to the BBC’s The Big Questions to debate this very subject last month alongside former Supreme Court justice Lord Jonathan Sumption. The question – ‘Is lockdown punishing too many for the greater good?’ – is timely, certainly for cancer patients like me and Kelly.

In 2016, at the age of 35, I was diagnosed with advanced bowel cancer which had spread to my liver and lungs. I have written about my treatment as ‘Bowel Babe’ and am a co-presenter on the BBC’s You, Me and the Big C podcast.

My odds are dire – fewer than one in ten people with my diagnosis make it to five years. The fact that I am here is testament to the incredible care and state-of-the-art treatment I’ve had from my oncologists at the Royal Marsden Hospital in London. My treatment has continued throughout the pandemic, something I’m overwhelmingly grateful for.

Yet during the debate, Lord Sumption told me that my life was ‘less valuable’ than others, implying that it was because I had cancer. He is well-known for his anti-lockdown views and in this debate suggested that the elderly and vulnerable should assess their own risk, shield should they want and let the young get on with their lives. His children’s and grandchildren’s lives were worth more than his, he argued, ‘because they’ve got a lot more of it ahead’.

But when I put it to him that I, as someone living with incurable cancer, was one of those people whose lives he didn’t consider valuable, he emphasised his point.

‘I didn’t say it was not valuable,’ he said. ‘I said it was less valuable.’

I was live on TV on a Sunday morning. It was shocking.

To say my life is worth less because I have fewer quality years left is to reduce it to the black and white of the ethics textbooks. I’ve seen this in practice myself, as a patient representative on National Institute for Health and Care Excellence (NICE panels debating whether to approve new cancer drugs. People on those boards ask routinely whether it is worth spending thousands of public funds on a drug which might only extend life by months.

But life isn’t like that. Tell that to my husband, my two children, Hugo, 13, and Eloise, 11, or to the families of anyone living under the shadow of cancer.

I took no personal offence from what Lord Sumption said. But what did rile me was the general point. Is that how people really think about those with cancer?

He has since emailed me, and we’ve agreed to disagree. He says his words were misinterpreted. One of many reasons he opposes lockdowns, he told me, is precisely because of the impact on cancer care. We both agree life, as old age or illness force you to stare at death more closely, is precious.

And what Lord Sumption was voicing has the bitter ring of truth. For it is precisely what many people living with cancer have felt throughout this pandemic – that their lives are indeed less valuable.

When coronavirus struck in March, I started to receive hundreds of emails and messages on social media. Cancer patients were telling me their treatment was being put on hold, their surgery was being postponed or they were unable to get referrals for worrying symptoms. Some people on clinical trials for new treatments (often their last hope) told how they had been paused. It was heartbreaking. People like us are on tight timeframes.

Cancer screening was supposed to continue but, in practice, few local health teams were carrying it out.

It wasn’t the fault of doctors – they too had to make heartbreaking decisions and many were redeployed to work on the front line. And some vulnerable patients faced a greater risk from catching Covid than from cancer itself, which meant some very sensible clinical decisions were being made. But it meant people with worrying symptoms were deterred from having them checked out. And today, these issues are creating a very different crisis in the NHS.

Cancer Research UK estimates that three million fewer people were screened for breast, bowel and cervical cancer between March and September last year. Screening is great for picking up early cancer, often before symptoms start, so delays inevitably mean cancers will progress, and some will become harder to treat. I know that all too well. It took six months for my cancer to be diagnosed. Yet, if bowel cancer is detected early, nearly everyone survives.

Bowel Cancer UK says the number of GP referrals reduced by 63 per cent in April compared to an average year – from 36,274 to 13,440. And 95,000 fewer women were referred to specialists for breast cancer symptoms between March and November, according to Breast Cancer Now.

Not all will have cancer. But inevitably, vital treatment is being delayed.

It also means there is now a huge backlog of 400,000 cases, Cancer Research UK says.

The latest statistics, from November, show 11 times more patients have waited more than six weeks for crucial diagnostic tests.

These cases must be treated as a priority. And, equally importantly, everyone should be assured that hospitals are safe. I’ve been going to the Marsden for my treatment every week and feel safer in hospital than at the supermarket. We’re kept apart from other patients, have rapid-result Covid tests before procedures and all of the staff are in PPE.

I began last year cancer-free but when a scan showed some of my lymph nodes had reactivated, I had several rounds of radiotherapy. In December, I had surgery to remove another cancerous lymph node near my heart. Not having visitors was hard, and so was isolating at my parents’ house for a month beforehand. I missed my husband and children – a month is a long time in any stage-four cancer patient’s life. But the NHS staff were there to pull me up again.

The good news is, NHS England has told regional health bosses to give cancer surgery the same priority as Covid. The ward at the Marsden is as busy as it used to be.

Yes, things are challenging, but the NHS says it’s open. Cancer treatment is happening in some hospitals. Referrals are going ahead. But, in my opinion, it’s a postcode lottery.

If Covid has taught us anything, it’s that our health is the most important thing and if we don’t have that, we’ve got nothing.

Covid has brought positive changes, too. NICE has issued emergency approvals for some cancer drugs which were on the waiting list for formal approval. These drugs will be a game-changer for some people. It proves that when things need to be done, they can be done.

Cancer treatment won’t simply be OK, or back to normal, once Covid is over. The backlog won’t disappear. We can’t let it become the next crisis.

Look at what the NHS, and scientists, have achieved with Covid. It’s made us realise how truly amazing our health service really is when it’s given the right resources. Imagine if we used all of that conviction, innovation and brilliance to deal with cancer, too?

Let’s make the NHS fit not just for us, but for our children and everyone who comes next. And let’s value everyone’s lives equally.

‘Cancer doesn’t care about COVID’

LaTroya Hall knows her beloved husband Sherwin (right, with their son Sancho) should still be alive today.

But the pressures of the pandemic meant that, despite going to A&E 13 times in just four weeks last year, begging for an MRI scan because of an agonising pain in his groin, Sherwin was sent away with antibiotics.

When a scan was finally carried out at St James’s Hospital in Leeds in May, it was too late. Sherwin had a 14cm tumour in his groin, and 30 further tumours in his lungs. Doctors told him it was an aggressive CIC sarcoma, which affects soft tissues, and gave him between three months and two years to live. He was only 28 when he died in December, leaving behind nine-month-old son Sancho. ‘I am torn apart with grief,’ says LaTroya, 32. ‘He was in so much pain. All he wanted was to be a father, and for another ten years with his son. I constantly think about what would have happened if he’d been diagnosed earlier. He may not have survived, but he would have had longer.’

The couple married at their home in Leeds a week before he died. Sherwin has recorded messages for Sancho when he is older. ‘Cancer doesn’t care about Covid. It will come anyway. I will tell Sancho how much his father fought to see him grow up, how brave he was. And I hope his experience can save other lives.’

‘I’m so glad I got my symptoms checked out’

When 42-year-old Annika Harris (right, with her daughter Millie) felt a lump on her right breast in March, she tried to ignore it. The country was going into lockdown, and the PA from Hatfield, Hertfordshire, decided not to bother her GP. But in May, the lump was still preying on her mind. Her mother had been diagnosed with breast cancer five years earlier.

So when the Government announced the NHS was still ‘open for business’, Annika got a referral to a cancer clinic for tests. Today she is very glad she did. She was diagnosed with HER2-positive breast cancer and, eight months on, is free of the disease. ‘I’m so relieved I went when I did,’ she says. ‘I could easily have left it. It’s been a difficult time. I’ve had to go to all of my appointments on my own and I’ve been shielding. But I no longer have any signs of cancer.’

Annika had a lumpectomy to remove the tumour, followed by chemotherapy and radiotherapy.

She is given breast cancer drug Herceptin every three weeks in hospital, and will be on hormone therapy tamoxifen for five years.

‘The NHS was brilliant,’ she says. ‘It felt really safe and I had no appointments cancelled. I’d tell anyone to make sure you get anything abnormal checked out.’

WORRIED SOMETHING MIGHT BE WRONG?

  • Speak to your GP about any new/unusual symptoms. Consultations are initially over the phone during Covid, but you can ask to see them in person. However, GPs can refer you to a specialist from a phone appointment.
  • Be direct with your GP. If you’re concerned it’s cancer, tell them that. Make it clear that any symptoms are not normal for you. Have a clear idea of when they began and the impact they’re having. Be your own advocate.
  • You will be invited for screenings when they are due as long as you’re registered with a GP, and they have your up-to-date contact details. Smear tests are every three years between the ages of 25 to 49, and every five years after 50. Mammograms are every three years between 50 and 70. Bowel screening is every two years for those aged 60 to 74 in England and Wales – you’ll be sent a kit. In Scotland it’s age 50-plus. Speak to your GP if you’re unsure when your last screening was.
  • For more information, contact Breast Cancer Now (breastcancernow.org, 0808 800 6000); Bowel Cancer UK (bowelcanceruk.org.uk); Cancer Research UK (bowelcanceruk.org.uk, 0808 800 4040)