We like to see things through here are Researching Reform, so not one to flit with the news as and when it goes out of fashion, we have an update for you on Ashya King, whose case, we feel, should not be forgotten for quite some time.

And this time, the news, quiet though it may be, is good. The wardship order was lifted upon the Kings arriving at the hospital in Prague (a hearing on Friday set down the terms – big thank you to lovely barrister, Alison Burge for letting us know).

The pioneering treatment that Ashya will receive in Prague at the clinic will, experts say, give Ashya a 70% chance of survival. It is worth mentioning that the hospital in the UK shut down the Kings when they suggested finding this kind of treatment, and that this action may well be grounds for their impending case against the hospital. The hospital in Southampton told the Kings that the proton beam treatment was ineffective and offered them two stark alternatives: prolonging Ashya’s life for a short period or turning him into what his father felt would be ‘a vegetable’.

The treatment is estimated to cost around £70,000 and although the Kings have received an incredible amount of support through donations both by charities and private individuals, they are also selling their home in Malaga in order to be able to meet the costs.

At the moment Ashya’s condition appears to be stable, with news that the cancer does not appear to have returned. The family now await the results of a spinal tap to see if there might be any residual cancer present in Ashya’s fluid. The outcome though, looks good.

We wish Ashya and his family well during the treatment process and hope that the little guy makes a full, and speedy recovery.

The Kings’ story is by now well-known: a little boy with a brain tumour, whose parents wanted to seek alternative treatment, but who were bullied into not doing so by medical professionals in the hospital. Without breaking the law, the family decided to leave the country to get the treatment they wanted for their son. Treatment they had researched and knew was available and viable. The parents were then arrested under suspicion of child neglect and detained in Spain where they had travelled, leaving their five-year old son in a hospital on his own for three days.

Luckily for the Kings, the debacle caused a furore around the world and a petition was signed by over 200,000 people to have Ashya’s parents removed from prison, and restored to his bedside. But how did we get to a point where knee-jerk reactions carry such far-reaching consequences? Consequences which still hang over the Kings’ heads as they must now deal with a languishing Wardship Order, which continues to severely restrict their duties and responsibilities as parents.

A few months ago, I went to my then GP, to ask if I could have a test for something. I didn’t know whether I had this ailment, but some of my family members did, and I suspected my ill-health was, for want of a better word, related. My GP was outraged that I had dared to ask for this test. He spent the remaining allocated ten minutes of my session bullying me and trying to belittle me. He gave me his diagnosis, without even checking me or suggesting other tests. I left the surgery feeling embarrassed, upset and certain that the diagnosis was  wrong. So what had I done to deserve such treatment, during a time when I was feeling really quite poor?

Medical professionals have for a long time wielded total power over their patients. We came to them for advice, and their word was law. With the advent of the internet, more networks online which allow us to discuss things with others and an increased awareness that professionals’ opinions can and do vary on any singular topic, the public have become braver, and better informed than ever.

Communication then, is a vital part of any professional’s arsenal. In a world where clients and patients may well come to the table with preconceived notions, which may not necessarily be right, it is up to professionals to move with the times and learn to engage in discussion, rather than shut families down when they are trying to explore the best possible options for care. Especially when vulnerable children are involved.

But is there more to this scenario than just professional arrogance gone wild? Services like hospitals and social work authorities are struggling to find the time to really engage with families and get to know them. Even an extra ten minutes sometimes is all it takes – but very few families have the opportunity today to sit down with a professional and really talk. And if medical and social care relies on communication to get the job done, then what are we really doing if we can’t even lay the foundations of proper professional practice any more?

I noticed in one interview I gave this week on the King’s case that I mentioned the parents were looking to sue the hospital and the police for the way they had been treated. This interview oddly seems to be missing today, but whilst it may be a controversial point, it is one worth mentioning. Very rarely do people sue if they feel they have been treated with civility and respect. In this case, the Kings appeared to have suffered not just with poor medical advice, but with the kind of arrogance that mocks the ‘ill-informed’ lesser party and most worryingly, endangers lives.

And so, it is all about communication. The Kings’ ordeal will soon be over, but the memory of not being there for their son at a time he needed them most will haunt them all forever. Indeed, the Kings claim now that this time apart so badly affected their son, that he began to deteriorate without them. And for my part, I had to find out what my own ailment was, on my own. And in the end, my GP had misdiagnosed me and I had to find out by myself, what was wrong and how to treat it. Which I did, thanks to my family, and the internet.

The moral of this story must surely be, that whilst professionals may still be an important resource for us all, they must remember that they can only survive if they engage with their patients in a meaningful way and remember that how they communicate is the most important aspect of their work. After all, it is this kind of basic connection that saves lives.

Steve Connor visits the pioneering clinic where Ashya will soon be treated – and is hugely impressed (Image and caption courtesy of The Independent)

Researching Reform was interviewed by the BBC this morning on the Ashya King case and the now infamous European Arrest Warrant that played its part in separating a very sick child from his parents.

If you’d like to listen to the interviews, please click on the links below and they will take you to the programmes we took part in.

• BBC Radio Devon
• BBC Radio Foyle
• BBC Radio Bristol
• BBC Radio Wiltshire
• BBC Radio Essex

We’d like to thank the BBC for having us. It was a really interesting morning and we felt very privileged to be able to discuss this case and highlight the issues with several very eloquent presenters. The folks over at the BBC also allowed us to take some photos of our morning, and so we’ve added them below too.

Despite other news which seemed to dominate the airwaves today, we very much hope that Ashya and the terrible ordeal he and his parents experienced are not forgotten. The family is still trying to raise money for Ashya’s treatment. If you’d like to make a donation, you can do so here.

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The BBC have very kindly invited Researching Reform to talk about Ashya King and the use of a European Arrest Warrant in this case. We will be on BBC Radio from 7am tomorrow morning. If you’d like to listen in, you can access the stations on iPlayer; we’ve added our interview schedule below for you:

• 0700 SOLENT  
• 0708 DEVON   
• 0715 FOYLE  
• 0722 BRISTOL 
• 0730 WILTSHIRE 
• 0738 KENT  
• 0745 STOKE 
• 0752 ESSEX

And if the folks over at the BBC allow us to, we’ll tweet and share photos of the morning at Broadcasting House too 🙂

It’s almost over. Ashya will be reunited with his parents shortly and the CPS has now rescinded the arrest warrant.

Having been held in custody in what is one of the most notorious prisons in Spain, where terrorists are detained, and having not been given any updates about their sick child for three days (Mrs King cried for the majority of her time in prison), the Kings are now free.

Whilst the police and the hospital remain adamant they did the right thing, The Kings will now be suing them both for criminal slander and false imprisonment. And Researching Reform is right behind them.

Authorities have conceded that the Kings had taken steps to safeguard Ashya’s health such as providing him with specialist food and charging his feeding pump using the car battery. Officials have now admitted that Ashya’s life was not in immediate danger, a glaring turnaround post the hospital’s insistence that it was.

For its part, the hospital now seems to have backed down, too. They say that Ashya could now have the proton treatment.

As far as we’re concerned, without full apologies these confessions are of no use to anyone. More than this, these small offerings are far too little, too late.

Sue the bastards. We wish you every success.

The moment we thought would come, has done so. During the time that the Kings were reunited with their son, who was diagnosed with a form of cancer in need of urgent treatment, and who subsequently went without the love and support of his parents for three days, in a foreign hospital on his own, because authorities deemed it necessary to arrest and detain his parents without just cause, we spoke to the BBC about why we felt the story was far from over, and why the actions of the professionals involved carried all the hallmarks of something rather less palatable than genuine concern for a little boy’s well being.

Ashya King cried like a wounded animal, we are told, until his parents were returned to his bedside.

This morning, the news tells us that The Kings were threatened with the removal of their child off the back of them wishing to explore other alternatives to the treatment on offer. Treatment which would leave their son with disabilities for the rest of his life.

The Kings detailed how one doctor told them that if they did not allow the hospital to treat Ashya, they would seek to remove their parental rights and go ahead with the treatment anyway.

The case will sound eerily familiar to anyone who works inside the child welfare sector. It carries all the hallmarks of a system gone rogue, unmanageable due to its sheer lumbering size, disjointed arms and resource strapped quarters, not to mention an ever falling standard of care.

In the interviews in which we spoke about the case we explained, despite some scepticism by interviewers, that the King’s ordeal sounded very much like the situations many of the families we assist find themselves in – desperate to do the best for their children, but constantly thwarted at every turn, by an ultra defensive system which seems to incubate a stronger strain of God Complex every day. Professional arrogance in this case, of which it has become apparent was a feature, is simply a symptom of a system manned by people under pressure, who often also happen to be not terribly good at the service they are supposed to be providing.

The hallmarks we identified were poor communication, hostility to new ideas and a defensive response to the family, which stems from a system that behaves more like a vulnerable person than a professional service provider. This is when families begin to take matters into their own hands, with many choosing to leave the country, looking for protection and better care, elsewhere. And who can blame them?

None of this of course excuses putting a child’s welfare on the line. The system needs to regroup and remember why it is there in the first place. It can no longer run roughshod over families and children, the stakes are too high.

As for Ashya King’s current treatment, the treatment the hospital in England wished to deny him, it has so far been very successful, and the Kings are delighted with Ashya’s progress.

And so to the Kings we say good luck, and go get ’em.

Britain used to pride itself on many things: education, law enforcement and a sense of calm in a crisis. Over the years, those values have eroded, eaten away by profit margins, lethargy and an unreasonable belief that technology will evolve entire nations with the click of a mouse.

What we are left with are the ruins of dreams. What we are left with, is Ashya King.

Ashya is the five-year old boy who has a brain tumour and whose parents removed him from hospital to flee to Malaga. The hospital in question refused to treat Ashya with a procedure the parents felt was less invasive – a procedure which targets the tumour specifically, avoiding, as the parents explained, Ashya’s entire body being bombarded with radiation. The hospital refused to entertain this therapy, and so the family fled to Malaga to find alternative treatment.

The police then issued an arrest warrant. In the days that followed, the family were located and the parents arrested.

The hospital and the police involved are unrepentant – Ashya, they say, needed immediate medical attention and should never have left the care of medical professionals. The parents, aware that their decision might cause concern, posted a video on Facebook to explain their actions.

So how did we get to a point where this evening, a little boy suffering with a brain tumour is no longer in the care of his loving parents because they have been arrested? Arrested for trying to find him the safest treatment possible for his condition.

The truth is, this story started long ago, when the justice system began to deteriorate, slowly at first, and then faster as resources become scarcer and people cared less and less about the art of their work and more about surviving environments where human beings have become nothing more than numbers, tools and scapegoats. But the end result is Ashya King.

Overbearing, heavy-handed and without common sense to steer its wielding power, government agencies are failing to carry out the most basic tasks. The hospital in question should have done more to help the family find a treatment for their son they felt comfortable with. They should have understood their concerns and tried to support them. They should have communicated better – whether to explain that the treatment was not effective or just to try to find a better way. But nobody bothered. And so the family fled. To a place, as it turns out, where they were happy with the treatment on offer.

The police should never have issued an arrest warrant. The EAW is already under extreme scrutiny for its blatant misuse over the last few years. It’s deeply embarrassing to think that our police force believe such an action in this context was even warranted. It’s hard to imagine that they ever tried to engage with the parents first, or to understand what was going on. And knowing that they had sought out treatment elsewhere and were clearly not neglecting their son, the police should have dealt with the warrant and had it set aside. But they didn’t.

And tonight, a little boy with a brain tumour lies in a hospital bed on his own, without the parents he so loves, and who love him.