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Ashya: The Untold Story

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Kitkat
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Ashya: The Untold Story

Post by Kitkat on 11th April 2015, 01:09

BBC Documentary - first broadcast on 10th April 2015

Ashya:  The Untold Story

The story of Ashya King - the five-year-old whose parents removed him from Southampton General Hospital because they wanted a different treatment for their son. For the first time, staff at the hospital talk about their role in events which led to a public outcry and hate mail being sent to doctors and nurses. Health correspondent David Fenton explores why the family turned their backs on the NHS and sought cancer treatment abroad.

Available to watch  arrow  HERE


for a further  
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Re: Ashya: The Untold Story

Post by Umberto Cocopop on 11th April 2015, 17:25

Well who'da thought it? The medical experts were right and the parents were wrong!

The boy's father is a grade A idiot. He not only put his son's life in danger by his actions but has subsequently also halved his son's chance of long-term survival.

This looks, to me, very much like the ignorant, pig-headed attitude people display when shunning real medicine in favour of 'alternative medicine'. Although proton beam therapy may be a real medicine, it was not appropriate in this instance.

What is also disconcerting is the way that people lap up the 'good guys' versus the 'bad guys' portrayal of this as a story - no doubt helped along by the tabloids' reporting of it. Forget facts, as long as the narrative is entertaining like a fairly story, the ignorant will participate like an audience at a pantomime.

Lastly, the NHS should never have paid for the proton beam therapy. While doing so may have been a short-term measure to deflect media criticism, it does actually make it look like they were wrong all along as well as it inviting parents of other children with the same condition to now expect this as a treatment when it is useless for this condition. A very silly decision IMO.
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Re: Ashya: The Untold Story

Post by Kitkat on 12th April 2015, 13:01

I don't think it's correct to say that PBT is "useless for this condition".  There are still many conflicting rumours going around concerning this particular case.  The treatment itself would have been appropriate if proper procedures had been adhered to.  

From 2018, PBT will be offered to patients in the UK at UCLH and The Christie NHS Foundation Trust in Manchester.
The Government has committed £250 million to fund the two centres.

UCLH’s planning application to build its centre was approved by Camden Council planners and the Greater London Authority, which means building work is starting on the centre in spring 2015. The aim is to open the centre in 2018.

https://www.uclh.nhs.uk/aboutus/NewDev/NCF/PBT/Pages/Home.aspx

What is Proton Beam Therapy?
Proton beam therapy is a different type of radiotherapy. It uses a high energy beam of protons rather than high energy X-rays to deliver a dose of radiotherapy for patients with cancer.

Which cancers does it work best on?
Some very rare cancers including tumours affecting the base of skull or spine can be treated with high-energy proton therapy.

Proton beam treatment can be a more effective form of therapy because it directs the all important radiation treatment to precisely where it is needed with minimal damage to surrounding tissue. The treatment is therefore particularly suitable to complex childhood cancers.

How do patients get PBT now?
In April 2008 the NHS established a programme to send patients overseas for proton beam therapy.
Because PBT is a specialist treatment for rarer cancers, it is commissioned nationally by NHS England.

More information is available on their website.


The main issue that has been overlooked here in all the media mis-reporting, is that the King family were/are in effect "health tourists".  It is not correct to say that they fled the country to their "holiday home" in Spain - and planned to sell it to fund the treatment denied to them by the NHS.  The Spanish property is in fact the family's regular home dwelling.  They had not lived in the UK for years and their kids were registered at schools in Spain.  They didn't get what they wanted from the hospital in Malaga so moved back to Britain thinking they would get everything here. The neighbours in Spain said their apartment had been on the market for 2 years but prospective buyers were put off by them having huge religious banners outside and in the windows. They also said they had been politely asked on numerous occasions to remove the religious stuff as the area has panoramic views across to the Rock of Gibraltar and they were lowering the tone.


Oh yes ... and it seems the King family are themselves planning to make their own documentary of their story -
http://www.mirror.co.uk/news/uk-news/ashya-king-father-boy-who-5388427
and I suppose the next step after that will be a book ...
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Re: Ashya: The Untold Story

Post by Kitkat on 12th April 2015, 15:17

Further controversy has emerged surrounding the proposed Proton Beam machines for the two centres in the UK.

The Daily Mirror reports:

Fury as NHS pays £125million for the £35million machine that saved Ashya King

Two Proton Beam machines are being bought for £250million but the price is way above the £35million for the same machine used at a clinic in Prague to cure Ashya

An NHS decision to pay well over the odds for the same equipment that saved Ashya King has branded a scandalous waste.

Two Proton Beam machines are being bought for £250million.

But the price of £125million each is way above the £35million for the same machine used at a clinic in Prague to cure five-year-old Ashya’s cancer.

And it is feared the machines, bought from a US firm, could be obsolete when brought into operation in four years.

MPs, including one from the Coalition, have called for an inquiry.

Labour MP Grahame Morris said: “It stinks to high heaven. This is a classic example of failure to secure value.”

Lib-Dem Tessa Munt added: “This is another NHS England cover-up and a walloping waste of taxpayer money.”

While Karol Sikora, the respected Medical Director of CancerPartnersUK, said: “By the time they will be operational they will be obsolete.”

MPs are demanding to know why it costs so much to buy and run each machine from US firm Varian.

Denmark paid £50million for a similar project.

The one used on Ashya cost £35million.

The UK currently spends £70,000 per Proton treatment in the US.

Mr Morris, a member of the Select Health Committee, claims it will cost taxpayers £373,000 to treat a patient in the UK.

Because the Proton uses a very powerful small beam of radiation it is particularly successful
in treating babies and children.

The machines vary in size but the NHS has decided on two “massive” ones.

Mr Morris added: “What is most shocking is that many cancer victims may be denied treatment as so much is being invested in these white elephants.”

The MPs who tried to investigate the scandal said they have been fobbed off at every opportunity and found it impossible to discover the finances involved.

A document leaked to the Daily Mirror on the financial side of the scheme is heavily redacted.

MP Munt said: “NHS England is withholding the truth from us - and the truth is there is no
justification for spending £250million.

"By the time they treat patients they’ll be out of date. There might be a case for one machine in the UK, but why not one like the one in the Czech Republic, at £30million?”

Mr Morris added: “These machines only work for a small number of cancer patients.

"They will also cost some £50million a year to run. Last year 134 UK patients used this treatment. This is the type of economic madness we’ve come to expect from the Coalition.”

One machine will be at Christie Hospital in Manchester and one at London’s University College Hospital.

Despite the deal being signed this month they will not be fully operational until 2018 at the earliest.

One expert said: “In Europe and America they are building better systems faster at half this price.”

http://www.mirror.co.uk/news/uk-news/fury-nhs-pays-125million-35million-5388338
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Re: Ashya: The Untold Story

Post by Umberto Cocopop on 12th April 2015, 19:45

@Kitkat wrote:I don't think it's correct to say that PBT is "useless for this condition".

Well I think it is!

It explains in that programme that once the tumour is removed by surgery, the whole brain needs to receive radiation in order to catch any residual cancer cells. Proton Beam Therapy is highly specific and so is completely inadequate for that task.

In other words: PBT's advantage is actually what makes it useless for this particular task. It's pinpoint accuracy means it's not suited to applying a diffuse dose of radiation.

The boy needed whole brain radiotherapy and chemotherapy - it looks like he's received neither due to the stupidity of his parents.
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Re: Ashya: The Untold Story

Post by Kitkat on 12th April 2015, 20:35

@Umberto Cocopop wrote:
@Kitkat wrote:I don't think it's correct to say that PBT is "useless for this condition".

Well I think it is!

It explains in that programme that once the tumour is removed by surgery, the whole brain needs to receive radiation in order to catch any residual cancer cells. Proton Beam Therapy is highly specific and so is completely inadequate for that task.

In other words: PBT's advantage is actually what makes it useless for this particular task. It's pinpoint accuracy means it's not suited to applying a diffuse dose of radiation.

The boy needed whole brain radiotherapy and chemotherapy - it looks like he's received neither due to the stupidity of his parents.

Yet, the PTC stated that the proton therapy is more effective than the radiotherapy Ashya was being offered on the NHS.  It was on that point that the High Court Judge approved the move to take the boy to Prague for the proton treatment.

It limits the collateral damage of radiation to other vital organs, such as the heart and liver in Ashya's case. This would lead to less severe long-term side-effects including heart and breathing problems.


@Umberto Cocopop wrote: the NHS should never have paid for the proton beam therapy.

So, why did they ....? What possible reason can they have for agreeing to it .... ? The worldwide campaign had already done a great job in raising the funds and this meant he was going to get the treatment anyway - so it was a rather lame excuse (stated in the documentary) to say when asked why they had agreed to fund it - "Well, he was there - and he needed radiotherapy".
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Re: Ashya: The Untold Story

Post by Umberto Cocopop on 14th April 2015, 12:17

@Kitkat wrote:Yet, the PTC stated that the proton therapy is more effective than the radiotherapy Ashya was being offered on the NHS.

Well everything I've read about it states the exact opposite.

Obviously, I'm not an oncologist nor do I know the ins and outs of the technologies involved but there seems to be a high-level argument which explains exactly why PBT is not appropriate (or is not the best approach) for this scenario - which I stated earlier.

I think the main issues here are:

  1. The actions of the NHS medics

    Did the medical team make the right decision for the right reasons?

    To me, it seems that both the oncologists involved and the medical advisory board that the boy's case was referred to agreed that PBT was not the best course of action in this case.

    I haven't seen any evidence that this was a case of PBT being a better treatment but that it was refused on the grounds of cost - which seems to have been the media's slant on the issue in many instances.

  2. The actions of the parents.

    Were the parents justified in taking the measures they did?

    I would have to say that this is an unequivocal "no". It's quite clear that they were ill-informed, went against the best medical advice, took actions that both endangered their son's life in an immediate sense and due to refusing the proper medical treatment for their son, have reduced their son's prognosis of longer-term survival.

    They made the wrong decisions, took the wrong actions, for the wrong reasons.

    I think that has to be recognised in spite of the media spin of portraying this as heroic parents fighting back against uncaring villains and a 'knight in shining armour' coming to the rescue.


@Kitkat wrote:So, why did they ....?

Well that's what I'd like to know!

I'm interested in how decisions are made (especially bad ones) and I'd love to know the reasoning behind this one.

It may be that they were trying to deflect criticism, damage limitation (even though they'd done nothing wrong), or perhaps thought that given the parents' pig-headedness that agreeing to pay for the PBT would at least mean the boy got some treatment rather than none. But, who knows?
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Re: Ashya: The Untold Story

Post by Kitkat on 17th April 2015, 00:05

@Umberto Cocopop wrote:
@Kitkat wrote:So, why did they ....?

Well that's what I'd like to know!

I'm interested in how decisions are made (especially bad ones) and I'd love to know the reasoning behind this one.

It may be that they were trying to deflect criticism, damage limitation (even though they'd done nothing wrong), or perhaps thought that given the parents' pig-headedness that agreeing to pay for the PBT would at least mean the boy got some treatment rather than none. But, who knows?

I think that is most likely the case (my underlined).  That same hospital is apparently well used to dealing with the media, as there were (I believe) two reality TV programmes in recent times where they were the featured hospital.
One of them:
The General was a BBC fly-on-the-wall Television series hosted by Yvette Fielding, Chris Serle and Heather Mills.[1] Based at Southampton General Hospital,[1] the programme tracked the progress of selected patients, including outpatients, at the hospital. The series was broadcast live[1] every weekday on BBC One, in a daytime slot. 61 episodes of the programme were aired in total; 58 of them in 1998[2] (from April to June), and the other three in 2002. The original director of the series was Dave Heather.[3] http://en.wikipedia.org/wiki/The_General_%28TV_series%29

So, they are already in the public eye and would also be well aware of how things can get misquoted, twisted and misunderstood in the media.

The reports (for instance) in various newspapers around the world stating that the proton treatment had "cured Ashya of cancer", got rid of his tumour etc ... are of course pure hype.  It was the initial surgery done at the Southampton Hospital that got rid of the tumour.  The follow-up treatment (i.e. radiotherapy/chemo/proton therapy) is then done as a precaution to eradicate any traces of cancer that may be left behind.

Example:  When I had my first breast cancer treatment, it was initial surgery (Lumpectomy) followed by radiotherapy.  The surgery removes the entire area of DCIS as well as a margin of normal, healthy tissue around it. The whole area that contained cancer cells is removed.  The radiotherapy which follows is a sort of 'just in case' - covering a wider margin to kill off any 'active' cancer cells which just might have escaped through the margin of surgery.  So, if the treatment goes as it should, you are classed as being 'in remission' but you need to have regular follow-up checks for 5 years (as this seems to be the 'crucial period' when cancer might creep back again).  Only after that 5-year period can you safely say you have the 'All-Clear'.

The first time round, I got my 'official' All-Clear news at my last check-up at the end of the 5 years - but it was decided they would do one extra check in a month's time - which was just as well, because at that extra check, another tumour was discovered - this time in the other breast.  I was assured that they were 'unconnected' - in other words the cancer had not spread, this was a brand new one.  Same procedure - lumpectomy ... only this time the surgery did not kill off all the active cells.  It was found that some of the cells had broken through the margin and were starting to "travel" - heading for the lymph nodes, apparently - so I had to have another immediate op (re-exision) to kill off 3 lymph nodes - which they did, successfully.  As before, the radiotherapy would then follow as a 'just in case' for the immediate surrounds.  It was also recommended on that occasion that I then have chemo treatment - for at least 5 years following the radiotherapy.  I declined the chemo, right from the start, opting for just radiotherapy as before.  (I was already experiencing long-term (permanent) side effects from the original radiotherapy - and set to have another bout of this same therapy; I considered this to be enough of a 'just-in-case'.  That was 6 years ago.  The "crucial 5-year period" is now past and all my checks have proved clear up till now ... officially 'cancer-free'.

Which brings me to other misquotes in the Ashya media ...... relating to 'survival' prospects and 'quality of life'.  It is the 'quality of life' aspect following surgery which is more beneficial where the proton beam therapy is concerned - as opposed to the standard radiotherapy.   The statistics quoted by the medical authorities are related to survival (where they are saying the survival prospects are reduced without this standard radiotherapy and chemotherapy; they are pushing these figures out to the general public, when - especially where children are concerned - the focus ought really to be on the quality of life during the survival period.
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Re: Ashya: The Untold Story

Post by Kitkat on 23rd August 2015, 11:28

International manhunt for Ashya King's family cost police force £16,000 angry

The £16,000 spent includes:

   Police officer overtime - £8,880.23
   Police staff overtime - £3,832.74
   Travel and parking - £132.81
   Subsistence - £213.63
   Accommodation - £1,406.20
   Flights - £792.48
   Experts to advise the CPS - £900


readmore    arrow   http://www.mirror.co.uk/news/uk-news/international-manhunt-ashya-kings-family-5526135
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Re: Ashya: The Untold Story

Post by Kitkat on 30th January 2016, 07:03

update

Proton cancer therapy 'proves effective'


By Dominic Howell BBC News
30 January 2016


Proton beam cancer therapy - at the centre of an NHS controversy two years ago - causes fewer side effects than conventional radiotherapy, research suggests.


The Study, published in The Lancet Oncology, suggested the therapy is also as effective as other treatments.

It pointed to similar survival rates and a lower impact on heart and lungs.

In 2014 the therapy was at the centre of a controversy over NHS care for children when the parents of Ashya King took him out of hospital in Hampshire to obtain the treatment abroad.

Their actions led to a police operation to find them.

Ashya, who was five at the time of his treatment, is now cancer free, his family said last year.

'Acceptable toxicity'

The study, which was led by Dr Torunn Yock from the Massachusetts General Hospital in the US, looked at 59 patients, aged between three and 21, between 2003 and 2009.

All the patients had the most common kind of malignant brain tumour in children, known as medulloblastoma.

After five years, their survival rate was similar to that of patients treated with conventional X-ray radiotherapy, but there were fewer side effects to the heart and lungs, the study found.

The paper said: "Proton radiotherapy resulted in acceptable toxicity and had similar survival outcomes to those noted with conventional radiotherapy, suggesting that the use of the treatment may be an alternative to photon-based treatments."

What is proton beam therapy?

see video:   Animated graphic comparing traditional radiation treatment with proton beam therapy

It uses charged particles instead of X-rays to deliver radiotherapy for cancer patients.

The treatment allows high-energy protons to be targeted directly at a tumour, reducing the dose to surrounding tissues and organs.

In general, it gives fewer side effects compared with high-energy X-ray treatments.

It can be used to treat spinal cord tumours, sarcomas near the spine or brain, prostate cancer, lung cancer, liver cancer and some children's cancers.

Sources: NHS England, Cancer Research UK




Independent expert Prof Gillies McKenna, who is the head of the department of oncology at the University of Oxford, said the research suggested that the "side effects are indeed dramatically reduced" with proton beam therapy.

"There were no side effects seen in the heart and lungs and gastrointestinal tract, which are almost always seen with X-rays, and no secondary cancers were seen at a time when we would have expected to see them in X-ray treated patients," he added.

Proton beam therapy is currently only available in the UK to treat eye cancers, but patients with other forms of cancer can apply for NHS funding for the therapy abroad.

However, the Department of Health has said that from April 2018 the treatment will be offered to up to 1,500 cancer patients at hospitals in London and Manchester, following investment worth £250m.




Two years ago a dispute about the use of the treatment prompted Brett and Naghemeh King, of Southsea, Hampshire, to remove Ashya from a hospital in Southampton against his doctors' advice.
The parents had wanted their son to undergo proton beam therapy in Prague, which had not been recommended by his care team in Southampton.
Their actions sparked an international police manhunt, and the couple were later arrested and held in a prison in Madrid.
They were eventually released and Ashya's therapy took place, with the NHS later agreeing to pay for it.
A spokesman for University Hospital Southampton NHS Foundation Trust, said that medulloblastoma was not currently on the list of tumours approved for this treatment on the NHS.
"However, we welcome any update to the existing clinical evidence on cancer treatments and will follow any expansion of the current national criteria," a spokesman added.




Key events for Ashya's treatment



  • Ashya had surgery for a medulloblastoma brain tumour at Southampton General Hospital in July 2014
  • His parents, Brett and Naghemeh, removed him from the hospital on 28 August and sparked a manhunt when they travelled to Spain
  • They were arrested but later released and Ashya was flown to Prague, Czech Republic, for proton beam treatment
  • He had six weeks of proton beam therapy, which cost between £60,000 and £65,000, according to the treatment centre, and which was paid for by the NHS
  • Ashya returned to hospital in Spain
  • In March 2015, Brett King announced his son was free of cancer



http://www.bbc.co.uk/news/health-35440016
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Kitkat
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Re: Ashya: The Untold Story

Post by Kitkat on 20th May 2018, 17:55

Update on the controversial Proton Beam Therapy treatment that was the subject of Ashya's story:

How does 'game changer' cancer treatment work?
The first high-energy proton beam therapy centre run by the NHS is now in operation in Manchester (2018), and a second therapy centre is due to open in London.

more http://www.bbc.com/news/av/health-42589635/how-does-game-changer-cancer-treatment-work


Report from December 2015:  http://www.bbc.com/news/health-35056004
Two new NHS proton beam therapy facilities could offer treatment to 1,500 cancer patients a year when they open in the next few years.

The therapy - which is particularly helpful for children with rare and complex tumours - was highlighted with the case of Ashya King last year.

The five-year old's parents took him abroad after doctors in the UK did not recommend it for his brain tumour.
Experts say the new centres will be "game-changing".

The therapy allows precise targeting of certain tumours, increasing the success rates and reducing the risk of damage to surrounding tissues.
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Whiskers
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Re: Ashya: The Untold Story

Post by Whiskers on 22nd May 2018, 11:07

@Kitkat wrote:

Oh yes ... and it seems the King family are themselves planning to make their own documentary of their story -
http://www.mirror.co.uk/news/uk-news/ashya-king-father-boy-who-5388427
and I suppose the next step after that will be a book ...

So what is the current situation with Ashya now, three years later? Did they make a documentary?

    Current date/time is 17th August 2018, 06:11