He’s “pretty much had to give up everything” to do what he THINKS he needs to do

Since the alternative being offered by the Doctors in England seems to have been palliative care, I reckon most parents would be desperate enough to think anything was better than nothing!

Radio 5 had a call in on this subject yesterday. I’m not for a minute saying that all is known in this case but what struck me was caller after caller talking about brain tumours in relatives and their experiences with NHS consultants refusing to countenance PBT. I’m not talking about considered decisions based on facts of whether or not each case was appropriate for PBT but simply that the consultants refused to even discuss the option.

That’s arrogance of the highest order and if it was my child I’d want my kid to at least be assessed by an expert clinic that offers PBT. Google may not provide all the answers but it can be brilliant for at least generating some questions about options that ‘may’ be available. Doctors are not perfect and have no right to refuse to discuss options like that.

Having seen an interview with one of the consultants at Southampton, I can very well believe how frustrated the parents were. He almost ‘boasted’ that their care would have provided a 70-80% chance of the child surviving for another 6 months!! Either that or a ‘chance’ that their child could live for many many years – its not a hard choice is it?

Very sad story all round, and currently situation (with the little lad in hospital on his own) is appalling.

However, regardless of their ‘good intentions’ bundling a seriously ill 5 year old child into a car (8 days after having brain surgery) and driving him across Europe is at best ill conceived, and at worst, downright reckless and stupid.
There is a lot more to this story than we’re being told, and I don’t think we’ll ever find out what led to this point.

I’m not really sure what the answer is – however I don’t feel that the parents are currently able to make sound and balanced judgments about their child’s treatment, and are likely to leg it, probably to Eastern Europe in search of a miracle cure.

I do understand how they feel – my younger brother died from cancer last year, and there were times when we were desperately searching the internet looking for a magic bullet – I guess desperation drives you to do crazy things..

Oddly, these stats from the BBC indicates that the majority of referrals for PBT end up with that treatment. It would be nice if the doctors would explain their reasoning for not wanting to refer the kid for PBT as I’m sure it’s not just on a whim

They won’t release it though – they aren’t allowed to. It is lose-lose for the hospital. The parents can say whatever they like but they cannot respond due to patient confidentiality.

They can’t really, confidentiality and all that.

Possible catch-22 though. If the NHS refers, the NHS pays. So if you agree to the referral on the basis that the parents pay, they can turn around and say ‘why wouldn’t you reimburse us?’.

Obviously I’d hate to think that budgetary constraints at the trust or commissioning group would influence a clinical decision, but sadly, the trust may be looking for strong evidence of likely benefit (which may not be available for this tumour type in children) before getting the cheque book out.

What a mess of a story. Both the parents, the police and the hospital seem to have communicated badly and it’s difficult to establish the facts.

I’ve been out of radiotherapy research for 20yrs (following the field very much at a distance) and I was surprised in some ways and not in others that we still don’t have a proton beam therapy unit in the UK. I went to meetings +20yrs ago when it was discussed that we should have a PBT and it wasn’t a new discussion then. Hence I’m more disappointed than anything else that we haven’t got one yet.

However for almost all brain tumours PBT is the best treatment and the NHS line of “the best treatment” the SGH are giving out is very much a partial truth. They might be giving the best treatment they have available but it’s not the best treatment. I suspect that the boy here didn’t even get Gamma Knife treatment. Basically radiotherapy is very much underfunded in the UK.

Christ. Didn’t realise PBT had been around for that long! What’s the evidence like on that for individual tumour types in paediatrics now?

Oddly, these stats from the BBC indicates that the majority of referrals for PBT end up with that treatment. It would be nice if the doctors would explain their reasoning for not wanting to refer the kid for PBT as I’m sure it’s not just on a whim

Probably because they know quite a lot about the therapy and whether it will work or not? If the Dr thinks it will work then they refer them to the Consultant/comittie/whoever who then agrees as presumably there’s a reasnoble ammount of evidence which both Dr’s have access too and are unlikey to make different decisions? It’s probably not quite as simple as “if this then that” but that’s probably how it worked?

Possible catch-22 though. If the NHS refers, the NHS pays. So if you agree to the referral on the basis that the parents pay, they can turn around and say ‘why wouldn’t you reimburse us?’.

Obviously I’d hate to think that budgetary constraints at the trust or commissioning group would influence a clinical decision, but sadly, the trust may be looking for strong evidence of likely benefit (which may not be available for this tumour type in children) before getting the cheque book out.

As it’s the NHS my guess it’s more likely simply under resourced, do you give the treatement slot to the patient whos condition may not improve from it, or the other patient who’s condition is known to be treatable by it?

PBT has been around for about 35yrs as a treatment, initially for tumours of the eye (usually retinoblastoma). The trouble is that you need a cyclotron (always sounds like a sci-fi machine every time I hear it!) and these are +£100M whereas linear accelerators for Gamma Xray are much cheaper (relatively). It’s not that PBT doesn’t work better than Xrays it’s just whether it’s cost effective to use them.

Having 5 family members who are Doctors / Surgeons both in the UK and the US I obviously make this statement very carefully…but…Doctors don’t always necessarily know what is right, they have to make decisions based on risk assessments, budgetary constraints as well as advice from central governing bodies.

I have two very close to home examples where in the first the doctors told the parents their newborn would not live to be 1 year old and with the work, research and care the parents have put in on their own i attended the childs 13th Birthday party in February and in the other case a relative with an advanced cancer was again given weeks to live but with a different form of treatment as well as some more “normal” lifestyle changes is fit and healthy 4.5 years later.

When you go through these things and have access to such a multitude of information, trials and studies from across the world, you will realise that you are more empowered than you think to question what is potentially better for your loved ones.

We will never know all the facts here, for reasons discussed above. The sad fact is that any health system cannot afford to pay for every possible treatment for every patient.

There needs to be a clear and transparent process for deciding who gets what, and a rational debate about how much “we” are prepared to pay into the NHS to deliver services.

And pray we never end up facing the desperate choices that this poor family appear to have done.

The latest update from the hospital: http://www.dailyecho.co.uk/news/11446970.Hospital_were_willing_to_support_Ashya_s_transfer/?ref=var_0

http://m.bbc.co.uk/news/uk-england-29040124
And the back pedalling begins.

What back pedalling is that then?

Having just read through it seem like there isn’t much back pedalling on there more just stating some facts. Now the kid is in hospital and they know where he is there is no need to find him as urgently.

Seems someone else might need to back-pedal now. As always expected by the sensible folks there’s far more to the story than first released and sure there’ll be more yet.

http://www.independent.co.uk/voices/comment/ashya-king-this-story-isnt-quite-what-it-seems-9716486.html

Having read that, I’m not sure she knows any more about the exact circumstances than any other journalist. Unless the authorities have been briefing off the record again (naughty).

But what’s this? She can’t resist a Jehovah’s dig:

“But the fact that his parents belong to a millennial religious cult – members believe that the end of the world is imminent and only 144,000 human beings will be saved – suggests that they might not be entirely open to rational argument.”

Pretty much any religious belief fits into that line, does it not? If you believe in any superhuman deity, you can’t be expected to behave rationally in any part of your life…

Then you look at the author’s biog, expecting her to be at least a medical journo, and all becomes clear:

“Known for her human rights activism and writing on subjects such as atheism and feminism, Joan Smith is a columnist, critic and novelist. An Honorary Associate of the National Secular Society.”

Not sure all is as it seems here…

I think the story in the Independent is starting to scratch the surface of the other side.

Found this from a spanish paper: http://www.theolivepress.es/spain-news/2014/09/03/costa-friends-reveal-ashya-king-was-diagnosed-in-spain-where-his-family-had-previously-lived-for-years/

Not sure all is as it seems here…

Yup I agree which I mentioned myself but it’s almost certainly not the way the media were trying to tell us at first.

There was a discussion pointing out the proton beam was seized on because it is precisely targeted and does not damage surrounding areas hence its frequent use on cancer in the eyes . But it this child’s case given the child’s cancer the need is to carpet bomb a whole area hence the proton beam would be counter productive or massively complicated with enhanced risk.