Brain cancer survivor Ashya King is being refused vital treatment by the NHS – nearly three years after his family defied doctors to save his life, his parents claim.
The eight-year-old lad’s plight hit the headlines when his mum Naghmeh and dad Brett took him from a hospital without consent to get pioneering treatment abroad.
Following a manhunt, the couple ended up spending three nights in a Spanish jail accused of neglect – only to be freed after an outcry.
And Ashya’s proton therapy treatment – at first refused by the NHS which was then ordered to cough up for it – cured his illness after 30 sessions at a clinic in Prague.
But today Brett and Naghmeh believe NHS doctors have since joined forces to slam the door on rehabilitation treatment and vital regular checks for Ashya which is hindering his recovery and development.
He still needs medical help to fully recover, including physio and speech therapy. And the family are being forced to take Ashya on 2,600 mile round trips to a hospital near the youngster’s grandparents in Spain just to get MRI scans.
Naghmeh, 47, told the Sunday People : “It seems like some kind of revenge.”
And property developer Brett, 53 - a father of seven – said wherever they take Ashya in Britain “no one will treat him. They all kind of stick together.
“He’s not getting any help from the NHS. No physiotherapy, speech therapy or occupational therapy. He needs some of this stuff.
“The main thing they don’t want to give to him involves hospitals, which is MRI scans, hospital appointments, anything like that.
“I spoke to our GP about a month ago and said ‘we have to keep going to Spain all the time to get MRI scans and oncologist appointments – can’t I do something here?’
“He just looked at me and said ‘you better carry on as you are’. He knows we can’t get any help from them. It’s not right.
“And the chief of University Hospital Southampton NHS Foundation Trust, Fiona Dalton, has said ‘we will not offer any treatment to Ashya’. They’re not embarrassed by it. They’re triumphing in it.”
Ashya can now talk, after previously having to communicate with hand signals, and is attending a mainstream primary school near the family home in Southsea, Hants.
When he was struck down at only five with a fast-growing medulloblastoma brain tumour in July, 2014, doctors at Southampton Hospital said he would be given normal radiotherapy.
They refused the parents’ request to take their son abroad for proton therapy – a type of radiotherapy which precisely targets cancer cells – even though the couple say one consultant admitted the therapy was the best option and was what he would choose for his son.
Brett claims UK doctors warned them “not to question” their son’s treatment or he could be taken from them until he was 16.
So the couple secretly wheeled him out of Southampton Hospital and fled abroad on a ferry before being arrested on an international warrant after a manhunt.
While they were behind bars in Spain their son was sent to a local hospital for urgent treatment.
After public outrage led to them being freed, the High Court ruled that Aysha should receive the £70,000 proton therapy in Prague paid for by the NHS.
Ashya underwent 30 sessions at the Czech capital’s Proton Therapy Centre and in March 2015 scans revealed the cancer that had affected his speech and hearing had gone.
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The couple feared their son would be taken from them by social workers if they came back to Britain.
Yet they returned home to Southsea, Hants, in the autumn of 2015.
But the family’s troubles were still not over. Speaking about the moment they realised they would get no more NHS help, Naghmeh, 47, said: “I felt strangely torn.
“There was part of me that was happy if we never had to return to Southampton Hospital again. But it didn’t seem right that doctors could pick and choose who they cared for, especially when it came to the life of a little boy.
Hearing tests were arranged and then cancelled. There was talk of the hospital arranging for doctors in London to treat him instead, but it turned out that they couldn’t help either.
"Apparently our decision to do what was best for our son had cost him the right to any medical treatment in his own country.”
Brett said: “We tried to put Ashya with neurologists elsewhere across the south, which didn’t work out. And then we tried London, but none will treat him.It’s not like we were against the doctors in Southampton.
“We just had a different idea and they didn’t want to listen so we carried on with the treatment we wanted. I don’t know why they think we’re the bad guys.”
A spokesman for University Hospital Southampton NHS Foundation Trust said: “From the moment we performed life-saving surgery to remove Ashya’s brain tumour, our interest was only ever in providing the best and care and treatment for him.
“We co-operated fully with his parents and were in the process of arranging a safe transfer to the Proton Therapy Center in Prague at their request when he was removed from our hospital without warning.
“We have, and always will, dispute the King family’s version of events.”
A spokesman added they have not been responsible for Ashya's care since he was discharged from Southampton General in September 2014.
He is now under the responsibility of neighbouring organisations, controlled by NHS England.
The spokesman also made it clear the Trust had never refused him ongoing care, but had instead advised his family that it would be better if he were treated by another organisation.
The spokesman added that University Hospital Southampton NHS Foundation Trust had never refused the youngster proton beam therapy.
But that as it was not the recommended treatment for medulloblastoma at the time he fell ill, the national paneldid not initially refer Ashya for it to be funded by the NHS.
NHS England said it had nothing to add.
- THE first proton beam therapy machine has now arrived in the UK at the Rutherford Cancer Centre in Newport, Gwent. The £17million 55-ton machine will take a year to install. It uses a high-energy beam of protons to target tumours, reducing the risk of damage to healthy flesh around them.
The day we though our son's cancer was back
Ashya's parents have told for the first time how doctors feared the youngster’s cancer had returned after he had a brain scan in Prague in September 2015.
Brett and Naghmeh King have made the revelation in a new heartrending book – Saving Ashya - telling of their family’s ordeal.
His mum Naghmeh writes: “Ashya went into the machine. He was so brave as always. ‘When will they give us the results?’ Brett asked Iva (Tatounova) from the Proton Therapy as we had some lunch. She said: ‘They would have already run out and told me if there was something wrong’.
“That put my mind at rest, no news meant good news, and why did we have anything to worry about? Every scan had been clear so far.
“But that evening when we met for dinner, as the kids played in a park in the hospital grounds, Iva pulled us away from them. ‘I’ve got the results of the scan’, she said. ‘It doesn’t say Ashya’s got a tumour and it doesn’t say he hasn’t got a tumour. The doctors couldn’t be sure.’.
“It felt like the sky was closing in, my lungs too, threatening to steal the breath from me. What else would be in his head apart from a tumour? My mind started to go into overdrive and deep inside my chest my heart felt squeezed tight.
"I went to Ashya and scooped him up in my arms. My poor boy, I thought. Please don’t say I would lose him.”
Speaking about the scare, Brett said: “I thought, ‘oh no, we haven’t made the right decision’.
“I was so down. Thankfully they did more tests and said: ‘No, there’s no tumour’.
“It was like someone had taken a two-tonne weight off my back.”
Naghmeh added: “Just like that we’d been given our lives back. We could breathe again.”
Saving Ashya is available on amazon.co.uk