I know people say medical care in America is too expensive (which isn’t true) and how we are so far behind other countries in terms of child mortality rates (this is only because we count children ‘alive’ before other countries do), etc., etc., but the fact is that in America, we don’t give up on kids. This story is about a family that was willing to give up everything to come to America to try and save their daughter when their own health care system gave up on her. The result? She lived. This is what I fear we will lose in our health reform – the ability to keep trying to save a life. Once that cost effectiveness research goes in, some government entity will be standing right there to say, “I’m sorry, mom and dad, we can save her, but it is just too expensive.” Right now, we will still be able to pay a US doctor cash from our own pocket for treatment, so if our forced health insurance won’t pay for something, we still have that option, but if our system becomes more like the system in Canada or Britain, then we will be forced to go overseas to save our children as well, and that just isn’t right. No one should be forced to leave their country for care. It should be an option, but never the only one.
Ruby’s parents raised £170,000 for lifesaving cancer treatment in America – then learnt the NHS could have treated her all along. Shockingly, it’s a story being repeated across Britain…
To see Ruby Owen smiling in her parents’ loving embrace, you would never guess the gruelling sacrifices her family made to save the chubby three-year-old from a brain tumour that the NHS had given up trying to treat.
Her father, Martin, had to abandon his thriving fire-alarm business to raise nearly £170,000 to take Ruby to the U.S. for specialist radiotherapy this summer. The family did everything from shaking tins outside football grounds to having sponsored chest waxes.
The Owens then uprooted from their home in the Midlands to spend three months in Indiana while Ruby received proton-therapy to destroy the tumour threatening her life.
This uses a special form of radiation beam to kill cancers without harming the surrounding delicate brain tissue.
Last year, Ruby’s British doctors had told the family there was nothing more they could do for her. The good news is that since receiving the U.S. treatment, Ruby’s latest scan shows she is clear of cancer.
Ruby is just one of a number of cancer-stricken children who have been effectively abandoned by the NHS, leaving their parents to strive against the odds to raise huge sums to fund life-saving specialist care abroad.
Only yesterday, the Mail revealed how John and Vicky Inglis, from York, raised £400,000 to save their five-year-old son Jamie’s life with a pioneering American cancer therapy. They were convinced his chances would be impossibly low if his treatment was left to the NHS.
It is a shameful reflection on our health care service. And, says Peter Bone, a Tory MP campaigning on behalf of such parents, it’s sadly all too typical of an NHS that has an ‘appalling record’ of not taking up new treatments that are adopted far more quickly in other countries.
But what is even more disturbing is that NHS funding may actually be available to give children these kinds of life-saving care. Some of the treatments are available as part of clinical trials here, while in other cases the NHS pays for children to be treated in Europe and the U.S.
Nevertheless, children often miss out: parents say their youngsters get labelled as too ill to receive specialist care in clinical trials for fear of making the treatment’s success rates look too low, or the families simply live in the wrong postcode to get funds for treatment overseas.
Instead, these parents are told there is nothing more that the NHS can do.
Not only does this sound blatantly wrong, experts say it does not even make economic sense, given the considerable costs involved for the health service in looking after children who slowly become ever sicker.
Ruby is just starting nursery, but she would not be here today if it were not for the alertness of 40-year-old Martin and her mother Rachel, 38.
Ruby had been perfectly healthy until she reached the age of two.
‘But then we noticed there was something wrong. She became wobbly on her feet and was no longer able to walk around corners,’ says Martin.
‘The GPs weren’t overly concerned, but suggested that I take her to the hospital. The consultant didn’t think there was a problem either, but he said to come back in a month.’
Then Martin and Rachel, from Stoke-on-Trent, noticed that Ruby was squinting.
‘We took her back to hospital the next day and got an MRI scan. It showed a brain tumour,’ he says. ‘Our world collapsed.’
Emergency surgery at Alder Hey Hospital, Liverpool, removed 95 per cent of Ruby’s tumour — but the news went from bad to worse. They were told Ruby had a comparatively rare and highly aggressive cancer.
‘When they examined the tumour, they said she had only a 5 per cent chance of survival,’ says Martin.
‘I got the impression the hospital thought it was time for us to pack up, go home and wait for the inevitable.
‘Initially, they thought the tumour had gone to her spine, but then they found it hadn’t, so there was a ray of hope — enough to try giving two courses of chemotherapy.
‘It reduced the tumour, so they gave her nine more courses. But Ruby’s blood pressure collapsed and she was rushed to intensive care. Amazingly, she rallied.
Martin and Rachel were told their daughter needed proton radiotherapy — an advanced treatment that does not damage the tissue surrounding tumours, as would conventional radiotherapy.
This means it can be used in extremely delicate areas, such as brains and eyes, to destroy tumours without causing catastrophic harm.
The NHS has one low-powered proton radiotherapy machine, but it can treat only eyes, not brains.
‘The head of oncology told us very candidly: “You need to ring America.” ’
NHS funding was proposed for Ruby’s trip, but this chance was snatched away, says Martin.
‘There is an experimental project to send children abroad for this treatment, but we were then told the team would not fund our trip because Ruby’s survival chances were too low.
‘I think it was about them protecting the success rate of a pilot project. Ruby’s outlook was obviously not good enough for them.’
The Owens realised they would have to find the money themselves.
‘We didn’t think twice about trying,’ says Martin. ‘We had a child dying of cancer. I had to give up work because fundraising and caring for Ruby and her elder sister, 11-year-old Charlotte, was a 24-hour job for me and my wife.’
Friends raised £12,000 through sponsored bag-packing at the local supermarket and cabaret nights.
Then the Owens got support from the charity Caudwell Children. Martin was interviewed on BBC Radio 5 Live. Within half an hour, someone who called himself ‘Stephen’ donated £10,000.
The comedian Lee Mack heard the interview driving back from a gig. He and his promoter donated the proceedings from his show in Stoke: £20,000.
Having raised the cash, the Owens travelled to the U.S. and lived for three months in a hotel while Ruby underwent 33 tough sessions of proton therapy. The treatment ended in mid-August.
The Owens are certainly not the only British family to face such an ordeal. In particular, funding problems are afflicting some parents of children diagnosed with the paediatric cancer neuroblastoma — the illness suffered by Jamie Inglis, featured in yesterday’s Mail.
Neuroblastoma is a cancer that forms in nerve tissue. Tumours can occur throughout the body but most often in one of the adrenal glands in the stomach. It is very hard to treat.
In Britain, the treatment situation seems a mess, to say the least. A significant proportion of affected children’s parents have no choice but to raise funds for lifesaving treatment in the U.S., as the NHS will not pay for their care.
The situation seems so confused and arbitrary that earlier this year Peter Bone held a debate in Parliament on the problem.
He was particularly worried about the plight of his constituent, six-year-old Zachary Knighton-Smith, who he says had missed out on experimental NHS-funded treatment for neuro-blastoma ‘for purely bureaucratic reasons’ — he had not contracted cancer within the time frame set by the clinical trial’s managers.
And there was no chance of Zachary getting onto any other NHS trials for the advanced treatment, called Monoclonal Antibody Therapy (MAT), before it would be too late to save him.
This therapy kills tumours by attacking them with immune-system antibodies that have been grown in a lab.
Peter Bone believes it is ultimately more economical — as well as ethically right — that the NHS should fund the care of all children with such cancers, no matter where they are treated.
‘With the Government spending £120 billion a year on the NHS, the cost of sending Zachary abroad for treatment is a drop in the ocean,’ he says.
Indeed, neuroblastoma affects only around 100 children a year, so the cost of giving them all equal access to life-saving NHS-funded treatment would be comparatively small compared with the cost of treating a child who gets sicker.
Following Mr Bone’s lobbying, Zachary’s primary care trust agreed to pay for him to receive advanced MAT treatment in Germany.
Other families seem left out in the cold. For example, Jaime Mighty is trying to raise £300,000 to take her son Lewis to the U.S. for specialist neuroblastoma treatment involving MAT therapy.
Jaime, 33, and her partner, Perry, 37, have managed to raise £215,000, but are £85,000 short.
‘We have been doing sponsored bike rides, sold charity calendars and done all sorts,’ says the mother of three from Mackworth, Derby.
It has been a long ordeal. Jaime first noticed that Lewis, now six, was becoming increasingly poorly in October 2008. He was off-colour and suffering stomach pains — but no one would take her seriously.
Her GP told her not to come back after she’d turned up at the surgery five days in a row. After weeks of badgering, she persuaded hospital doctors to X-ray her son.
‘They called us in the next morning,’ says Jaime. ‘They’d found a mass in his tummy that appeared malignant. Two weeks later, we were told that a biopsy showed stage four neuroblastomas. The cancer had spread through his bones.’
Since then, Lewis has endured ‘brutal’ chemotherapy and radiotherapy, stomach surgery to remove the cancer tumour and a stem cell transplant — yet none of this has cleared the cancer, says Jaime.
Lewis has had no further treatments for more than a year because he is considered by the NHS to have run out of treatment options.
‘In himself, he is really well,’ says Jaime, who also has Leah, 14, and Megan, 12. ‘He weighs four-and-a-half stone, eats well and sleeps well. He is even in the school football team.’
Nevertheless, Lewis has not been invited onto NHS-funded trials of MAT therapy in Britain.
‘I think it was because he had already been classed as “refractory” and “unresponsive” by doctors,’ says Jaime. ‘They wanted children who were likely to respond well. It would make the trial look better.
‘You can get despondent, but then you think this is our child, so we are forging ahead with fundraising. I think it is reasonable for the NHS to help pay for Lewis to go to New York. Why not? I don’t understand it at all.’
There may be some glimmers of hope for NHS care for such children. There are plans to build several high-tech proton-therapy facilities — but these are at least five years away. Meanwhile, NHS trials are continuing into antibody therapies for neuroblastoma, with British doctors following up the pioneering American research.
But all these advances are overshadowed by increasing cash shortages in the NHS — which leaves parents constantly worried about what may happen to their children in the future.