‘As a cancer survivor you’re expected to feel grateful’: Laura Fulcher’s campaign for better care

When Laura Fulcher went to A&E in 2014, doubled over in agony, she was desperate for answers. She had been suffering from stomach pains and bowel changes for more than a year, with no medical support or investigations. “I overheard a nurse saying there were no ‘real patients’ in A&E that night,” she remembers. “I was sent home feeling guilty for wasting their time.” A few months later, a colonoscopy was finally arranged, which revealed an advanced tumour in her bowel. It required invasive surgery and aggressive chemotherapy, leaving her with adhesions: painful scar-like tissue in her abdomen.

Before she became unwell, Fulcher had been forging a successful career as a secondary school English teacher. When the first niggles of pain began in 2012, when she was 29, her GP was quick to diagnose irritable bowel syndrome. As her condition deteriorated, with terrible pain, bleeding and exhaustion, she visited her Warwickshire GP surgery a total of nine times over the course of a year. “They said it wasn’t serious and, because I felt like I was being difficult, I was apologetic, diminishing my experience.”

By the summer of 2013, Fulcher was so unwell she was forced to leave her job. In October, she travelled to South America, hoping the break would heal her. “One day, I started haemorrhaging. I went to a pharmacist and listed my symptoms. She was horrified. She told me to go back to the UK and get help straight away.”

But back home, the sense of urgency wasn’t shared by the GP she saw. “I was referred for further testing but it took a long time. The doctor told me there were 70-year-olds waiting for tests who could have cancer, and they had to come first.” In March 2014, five months after she was referred for investigations, an ultrasound showed abnormalities and she was offered a colonoscopy. “I saw this grotesque, bleeding mass on the screen and, through a haze of pain, my first thought was relief. Finally, I had proof it wasn’t all in my head. Then the consultant told me it was likely to be cancer.”

Fulcher quickly realised she would have to become her own advocate. Despite the side-effects of treatment, which left her with extreme fatigue, she found the path to diagnosis and the aftermath of cancer significantly more traumatic. “I felt cared for during my treatment. It was a case of having a focus – you go into survival mode. When the treatment finished, I was in remission and I expected to feel ecstatic. Instead, I felt alone. I was left to recover [by myself] physically and psychologically – and this is when things fell apart. I’ve since discovered that most people find the end of treatment just as difficult as the time of diagnosis.”

Fulcher went looking for support via the NHS and cancer charities, but found nothing suitable available. “With cancer often presented as a ‘battle’, there’s no place for the stories of what happens afterwards and the long, hard slog of recovery.”

In 2016, she took matters into her own hands and set up Mission Remission, a grassroots charity supporting people to move forward after cancer treatment. Its online hub shares hundreds of practical strategies and inspirational testimonies on everything from dealing with fatigue and nausea, to going back to work and coping with anxiety. The charity also offers advocacy support, hosts a vibrant online community, runs support groups as well as an online book club, and has a campaigning team.

“This year, we’re focusing on fitness motivation, working with a cancer rehab personal trainer to run fitness drop-ins,” she says.

Another huge challenge for cancer survivors is the anxiety around possible recurrence. You’re expected to feel grateful, but how can you when you live in constant fear that cancer will return?” Fulcher’s fears were realised in 2018 when she was diagnosed with thyroid cancer. It was treatable, but it left her feeling even more scared for the future. “I now have a one-year-old little girl. When I think about the cancer coming back, my worry is all for her. I know others feel the same.”

In addition to offering support for those feeling anxious, positive stories can offer hope to others, and help them find meaning again. “For me, getting a camper van and travelling around the country, as well as setting up the charity, were part of my recovery. For others it might be family or fishing. It’s important to know there can be life after cancer.”

The charity is run mostly by volunteers, and supported with small grants from funders such as the national lottery. More than 22,000 people have been helped by Mission Remission to date, and it has an active membership of 15,000. In 2020, Fulcher also launched Something’s Not Right, a campaign that aims to speed up cancer diagnosis by ensuring that “people worried about symptoms know how to best champion themselves and doctors know to take the words ‘something’s not right’ seriously”.

“My aim is for no other person to wait 15 months for diagnosis,” says Fulcher. “People often think that improving cancer diagnosis is an impossible task and that nothing can change until more innovative tests are rolled out, but that’s just not true. There were so many missed opportunities to help me, and our campaign focuses on the missed opportunities that so many of our community have faced.”

According to Cancer Research UK, more than a third of cancers are diagnosed late due to delays in referrals or late presentation of symptoms, while figures from the British Medical Journal show that every month a diagnosis is delayed raises the risk of death by 10%. GPs can refer patients to hospitals through different routes. One of them is the speedy “cancer pathway”, which usually means you get to see a specialist within two weeks – but Public Health England found that, even before the pandemic, more than 50% of cancer patients were not referred along this pathway or flagged by GPs as “urgent”.

Over the past two years, Mission Remission has been commissioned to help the NHS to improve early diagnosis in several regions. “In our recent survey, 65% of people told us they were not clearly instructed that they needed to return to their GP if symptoms didn’t clear up. This is one of our calls for change – every GP appointment needs to end with ‘next step’ discussions: when to return if symptoms don’t clear up,” says Fulcher.

An NHS spokesperson confirmed staff had met with Fulcher and Mission Remission as part of efforts to ensure every patient gets a follow-up plan that suits their needs and can access clinical support if they are worried about symptoms. The spokesperson said: “Earlier diagnosis is a key priority and the NHS is seeing more people than ever for urgent cancer checks.”

The NHS long-term plan for cancer states that “after treatment, the person will move to a follow-up pathway that suits their needs, and ensures they can get rapid access to clinical support where they are worried that their cancer may have recurred”. In September 2020, the NHS launched a nationwide cancer quality of life survey, speaking to people 18 months after diagnosis. It aims to improve early diagnosis rates via new testing methods, and encouraging people to come forward for routine tests.

Last year, Mission Remission worked with the NHS in Hackney to determine what changes people wanted to see in cancer services. The charity is now helping to enact 16 recommendations, including counselling referrals during every health appointment, and offering treatments for chemotherapy side-effects.

Despite the challenges Fulcher faces as a result of her own late diagnosis, her determination and strength seem to vibrate through her small charity and those she works with. “It’s easy to think: ‘Oh, we’ve just been through a pandemic – improving services is impossible. But that’s nonsense. The NHS was founded just a few years after the second world war. It is first about believing change can happen, then finding the power to act.”

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