My missed screening led to a mastectomy
Helen Jarvis tells Eleanor Steafel how she fears for her family following the NHS breastscreening scandal
Helen Jarvis was getting ready for bed on Wednesday night when her son, James, texted her with a link to a BBC news story. “You haven’t been affected by this have you, Mum?” he wrote. Helen scrolled through the article wearily, the oestrogen-blasting drugs she had been taking since her mastectomy in March making her more tired and achy than usual. As she read, a bubbling anger rose in her chest. She had been busy all day shopping in Milton Keynes, on the hunt for a comfortable night-time bra (which she now has to wear to support her breast implant), and hadn’t fully taken in the news that had been raging since that morning about a glitch that had meant the NHS failed to call more than 450,000 women to attend breast screening appointments over the course of nine years – an error that may have shortened the lives of 270 women, and has left thousands more wondering if they too could have been affected.
Helen did the maths. The screenings were missed between 2009 and January of this year, and the women affected were now likely to be between 68 and 79. Helen is 72, and when she was diagnosed with breast cancer in February this year, her GP realised it had been four years since her last screening. She would have been due one a year earlier, but never received a letter.
“I texted back and said: ‘Think I might be, feel rather angry, but need to park the anger and go to sleep’.” Helen has been needing nine hours’ sleep a night lately, but “that night, I only got about three or four because I was reading up on it all and I was so angry that I couldn’t sleep”.
For Helen, a mother of two, the fact that she worked for the NHS as an occupational therapist for her entire career has made this scandal all the more galling. Since the news broke, she has summoned the strength to appear on TV and radio to ask the Government and the health service to explain themselves, to offer compensation to the victims’ families and, more than anything, to properly apologise. “I would like anybody who was involved to say sorry publicly, even the person who mismatched the computers,” she tells me from her home in Newport Pagnell as she heats up supper after a long day dominated by the fallout.
Last week, Helen sat for an hour trying to get through to an understaffed, inefficient helpline set up to field calls from those affected. “There are either far too few people on the helplines or this problem is bigger than they’re admitting,” she says.
Helen knows better than most how overstretched the NHS is, but in this of all weeks – and with the realisation that maybe she could have been spared invasive surgery and treatment – she expected to get through quickly to a sympathetic voice who could offer useful advice.
“The impression I got reading up about it was that you’d be forwarded to a nurse if you said you actually had cancer,” she says, the frustration clear in her voice. “This was totally erroneous, obviously.”
When she finally got through, Helen was offered two options: the first was an email address to send her official complaint, while the second was the number for the Macmillan helpline. Helen has been a volunteer for Macmillan ever since her daughter, Carol, was diagnosed with Hodgkin’s lymphoma in 2004, working on the charity’s online community forums, which provide help and support for people with the disease. “She spelt it out and because I’m a volunteer I happened to know it,” she says. “I was one of their first online community champions. I went on there to help other people through the whole gamut my daughter went through, but then found I needed the group myself. I know that the phone lines are constantly busy. To add that much pressure to them is grossly unfair.”
Helen had been wondering when her next mammogram might be when, in February, she felt a lump in her breast. Since retiring, she has been a full-time carer for her husband, who has debilitating spinal arthritis, and, of course, her daughter – a professional trombonist who, thankfully, is now in remission after seven years battling cancer. Helen is also a keen volunteer, with a bustling social life, and, like many of the women who have found themselves affected this week, didn’t realise it had been four years since her last scan. “I thought: ‘one of these days I must look up the last time I had a mammogram.’ One evening I thought ‘I think I’ve got a lump’. I made an appointment with the GP. When he felt it, he was a bit dismissive. He looked at my records and said: ‘Ah, I see it’s been four years since you had a mammogram. Oh well, in which case I’ll refer you.’ I thought, would you not refer me anyway?”
A biopsy revealed that the lump was indeed malignant, but that it hadn’t yet spread to Helen’s lymph nodes. She was booked in for a mastectomy. She knows now that had her tumour been caught a year earlier – when she should have gone for her final scan, in the year of her 71st birthday – she may not have had to have such an invasive operation.
“They had to scrape the tumour away from my skin,” she says, recalling the first of the two operations she had, after complications during the first meant she had to be rushed back into surgery hours later. “They like a millimetre clearance, and I didn’t get that. A year before that, had I been seen, I would have got well over a millimetre. That is a worry I have now that I would not have had.”
It’s clear from speaking to her that Helen is level-headed; an incredibly strong wife and mother. She watched her daughter go through the most unimaginable trauma during her own battle with cancer, and “we’d just got to the point with Carol where we thought ‘and breathe’, when I was diagnosed”, she says.
Helen is among the thousands left still calling for answers this week, waiting for someone to take the blame. “I would like for my kids, James and Carol, to be compensated for the entire week that both of them took off to care for me after my mastectomy. I think somebody needs to fall on their sword. Somebody needs to admit to the problem, and a resignation is in order.”
That Helen and her family have had to endure the pain and worry of her own illness in the past three months seems desperately unfair. But she won’t hear of this being a private battle. “I’m angry on behalf of everybody who has been affected,” she says, defiantly. “We’re all now in our 70s. We’re not working. We’re post-war babes, we’re strong. We’ve been around a long time. We might not be paying into the system, but we’ve paid into the system for a long, long time. I think we need to be treated better than this.”
‘I’m not crying for me – but for everyone whose life has been affected by this’