Friday, 19 July 2019

Why couldn’t the NHS save my son’s life, asks Charlie’s mum

Why couldn’t the NHS save my son’s life, asks Charlie’s mum

A WOMAN who had to take her young son to Turkey for cancer treatment wants to know why he was refused it on the NHS.

Toni Ilsley spoke out after
12-year-old Charlie finally finished his course at Ankara Memorial Hospital last month, four years after being diagnosed with the disease.

He had specialist CyberKnife treatment, the latest radiotherapy technology, followed by chemotherapy to tackle two tumours on his spine.

This was not available at the John Radcliffe Hospital in Oxford, where he’d had surgery and chemotherapy previously for a brain tumour.

Mrs Ilsley, of Buckingham Drive, Emmer Green, says her son would be dead if she hadn’t taken Charlie abroad to be treated.

The repeated trips to Turkey have meant she hasn’t been able to work since Christmas and the family is £30,000 in debt, while her son has missed weeks of classes at Highdown School in Emmer Green.

The Oxford University Hospitals NHS Foundation Trust, which manages the John Radcliffe Hospital, said last year that CyberKnife was only available to adults. Charlie was also denied the cancer treatment drug Avastin. Mrs Ilsley said: “I’m 100 per cent sure that if I hadn’t gone to Turkey Charlie wouldn’t be here now.

“First of all he would have been paralysed because the cancer was in his spine and he would have been in a wheelchair.”

She had to find out about the CyberKnife treatment herself.

“You’re on your own basically,” she said. “You have someone saying, ‘that’s it’ and from then you have to do everything yourself and you have to do it quickly.

“You’re in a situation where your child’s life is in your hands and you don’t know where to go or who to turn to. I even phoned my GP and said, ‘can you help me?’

“We’re lucky we came across the right doctor who was absolutely brilliant.”

Doctors at the John Radcliffe initially thought Charlie had five tumours on his spine and were reluctant to carry out CyberKnife, saying they didn’t want to “chase” tumours around his body.

In April last year, following a relapse, he began a course of temozolomide, another cancer treatment drug.

But Mrs Ilsley said: “That wasn’t going to do anything apart from maybe buy us a little time. One oral chemotherapy hasn’t got a chance.

“Avastin is part of the protocol for relapse of medulloblastoma [brain cancer] and he’d never had that but out of the people I’ve seen who’ve had it there’s a fair few who have been clear for four or five years. If it works, you want it.”

The family received a letter from the trust in August saying there were no clinical trials available for relapsed medulloblastoma or the availability of Avastin therapy in the UK.

Charlie’s case was also put to the national stereotactic radiotherapy service multi-disciplinary team but the specialists would not intervene.

By this time, his mother was so worried about losing Charlie that she had already taken him to Turkey for radiotherapy treatment.

Mrs Ilsley said: “I’d like to know who sat round that table that day and said ‘no’ to Charlie. Why was he a ‘no’ when he was so well and his cancer was actually stable?

“I’d like to know why there’s no treatment for relapsed medulloblastoma in this country. I am considering seeking legal action — not for me but for Charlie’s sake having to be put through this and what happens if it happens again?”

Mrs Ilsley said she emailed Prime Minister Theresa May last year to highlight her son’s plight and the lack of treatment in the UK but did not receive a reply.

Meanwhile, she has now returned to work at the Day Lewis pharmacy in Sonning Common. Her husband Mark, a builder, stayed at home most of the time that his wife and son were in Turkey so he could continue working.

Mrs Ilsley said: “Financially, this has had a massive impact. Mark is trying to earn what we both used to earn.

“For Charlie, he missed his friends and his family. He missed school because they don’t have any schooling in hospitals in Turkey like they do here and just being alone in a foreign country is scary.”

Charlie first showed signs of being ill in March 2015. Doctors discovered a tumour about the size of a snooker ball in his brain. Another tumour was found on his spine. He underwent a 10-hour operation in April that year in which the brain tumour was partially removed. He then had 31 sessions of radiotherapy followed by chemotherapy before he was given the all-clear in March 2016.

But in March last year two tumours on his spine were discovered and he had the CyberKnife treatment.

A spokeswoman for the Oxford University Hospitals NHS Foundation Trust said: “We’re very pleased to hear that Charlie’s treatment went well.

“Cyberknife treatment is one form of stereotactic radiotherapy or radiosurgery.

“Oxford University Hospitals is only commissioned to provide stereotactic radiotherapy to adults who have small volume brain metastases, vestibular schwannoma, small volume meningioma and selected pituitary adenoma.

“Paediatric cases are treated at national treatment centres.”

A spokesman for NHS England, which commissions these specialist treatments, said: “The NHS funds this treatment for lung cancer as well as research into its use for other types of cancer.

“However, it is not always clinically appropriate or a better treatment than other options already available on the NHS.

“These are difficult decisions, which is why they are made by clinical experts.”

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