Discussion
AlfaPapa said:
For clarity:
The Hospital do not have the power to consent or approve the treatment.
They *only* have the power to refer to the approval committee, which had already taken place - so yes, it did happen before this story hit the media.
The committee is the "Proton Beam Therapy Clinical Reference Panel" who review individual cases on a clinical basis (not financial).
Well that's reassuring to know; so not a budget holding manager in sight of the decision making process then?The Hospital do not have the power to consent or approve the treatment.
They *only* have the power to refer to the approval committee, which had already taken place - so yes, it did happen before this story hit the media.
The committee is the "Proton Beam Therapy Clinical Reference Panel" who review individual cases on a clinical basis (not financial).
The membership is listed here:
http://www.england.nhs.uk/ourwork/commissioning/sp...
There are 12 voluntary clinical representatives from 12 geographical regions in the UK, plus four positions for patient and carer representatives plus input from other clinicians. In the case of Ashya King an American Specialist was also consulted.
http://www.england.nhs.uk/ourwork/commissioning/sp...
There are 12 voluntary clinical representatives from 12 geographical regions in the UK, plus four positions for patient and carer representatives plus input from other clinicians. In the case of Ashya King an American Specialist was also consulted.
AlfaPapa said:
The membership is listed here:
http://www.england.nhs.uk/ourwork/commissioning/sp...
There are 12 voluntary clinical representatives from 12 geographical regions in the UK, plus four positions for patient and carer representatives plus input from other clinicians. In the case of Ashya King an American Specialist was also consulted.
So that confirms that the decisions are taken in a budgetary vacuum? http://www.england.nhs.uk/ourwork/commissioning/sp...
There are 12 voluntary clinical representatives from 12 geographical regions in the UK, plus four positions for patient and carer representatives plus input from other clinicians. In the case of Ashya King an American Specialist was also consulted.
That would be nice as I know plenty of areas in the our current tax funded health services that are driven entirely by budgets. Let me be clear, a consultant recommends urgent care of a particular type, which has to go through a managerial portal, and access to that treatment is blocked for financial reasons. For the record I do not refer to cosmetic surgery etc.
I cannot expand on that, but believe me, it happens, regularly in some fields. Nice to know that PBT is different.
Making a huge assumption is sounds as though you are referring to Procedures of Limited Clinical Value or Threshold dependent procedures which are treated in a similar way to Proton Beam Therapy in as much as it should always be a clinical decision.
PLCVs and threshold dependent procedures are determined by clinicians at the beginning of each contractual year. Whilst there is pressure on the NHS to reduce costs, and so expand this list of treatments, they always have to have clinical approval and on an individual basis can always be appealed where a case would be reviewed, again, by clinicians and NOT managers.
Commissioning policies following the NHS reforms are much more variable by postcode, you should be able to access what isn't routinely commissioned by googling your local CCG (e.g. Vale of York CCG) and "Commissioning Policies".
Finance is never a reason made to restrict treatment. If it's something you are having particular issues with personally could I suggest you drop me a PM and I can help you to resolve the situation.
PLCVs and threshold dependent procedures are determined by clinicians at the beginning of each contractual year. Whilst there is pressure on the NHS to reduce costs, and so expand this list of treatments, they always have to have clinical approval and on an individual basis can always be appealed where a case would be reviewed, again, by clinicians and NOT managers.
Commissioning policies following the NHS reforms are much more variable by postcode, you should be able to access what isn't routinely commissioned by googling your local CCG (e.g. Vale of York CCG) and "Commissioning Policies".
Finance is never a reason made to restrict treatment. If it's something you are having particular issues with personally could I suggest you drop me a PM and I can help you to resolve the situation.
AlfaPapa said:
Making a huge assumption is sounds as though you are referring to Procedures of Limited Clinical Value or Threshold dependent procedures which are treated in a similar way to Proton Beam Therapy in as much as it should always be a clinical decision.
PLCVs and threshold dependent procedures are determined by clinicians at the beginning of each contractual year. Whilst there is pressure on the NHS to reduce costs, and so expand this list of treatments, they always have to have clinical approval and on an individual basis can always be appealed where a case would be reviewed, again, by clinicians and NOT managers.
Commissioning policies following the NHS reforms are much more variable by postcode, you should be able to access what isn't routinely commissioned by googling your local CCG (e.g. Vale of York CCG) and "Commissioning Policies".
Finance is never a reason made to restrict treatment. If it's something you are having particular issues with personally could I suggest you drop me a PM and I can help you to resolve the situation.
Thanks, I don't know your background and the views I express do not relate to any treatment I to wish to access. Rather they are views formed from years of extremely close observation of certain aspects of government funded health services from an experienced consultant level. PLCVs and threshold dependent procedures are determined by clinicians at the beginning of each contractual year. Whilst there is pressure on the NHS to reduce costs, and so expand this list of treatments, they always have to have clinical approval and on an individual basis can always be appealed where a case would be reviewed, again, by clinicians and NOT managers.
Commissioning policies following the NHS reforms are much more variable by postcode, you should be able to access what isn't routinely commissioned by googling your local CCG (e.g. Vale of York CCG) and "Commissioning Policies".
Finance is never a reason made to restrict treatment. If it's something you are having particular issues with personally could I suggest you drop me a PM and I can help you to resolve the situation.
Whilst it may be that your views, however formed, relate to unrestricted areas of provision, mine are based on actual knowledge of multiple cases of budget refusal which has had deleterious effects.
I repeat these are not inconsequential treatment plans that have been refused.
Anyway, sorry, can't say more.
For whatever reason interest is this seems to a have waned; here's new information which helps put the parental concerns in context.
http://news.sky.com/story/1343907/ashya-parents-do...
http://news.sky.com/story/1343907/ashya-parents-do...
carinaman said:
It follows on from Ashya's brother said about quality of life.
So the police were hunting for a family that didn't want their kid crippled?
Whole bunch of mixed journalism there.So the police were hunting for a family that didn't want their kid crippled?
The parents of Ashya King claim a doctor treating their son warned them the only treatment available on the NHS would leave the five-year-old with life-long disabilities.
and experts warned radiotherapy could leave his son severely disabled.
With radiotherapy, your son will get secondary tumours
Unsure that any doctor could definitely state the above. Probably, yes, but absolute statements? would/could/will, etc
carinaman said:
It follows on from Ashya's brother said about quality of life.
So the police were hunting for a family that didn't want their kid crippled?
That is a highly skewed view, influenced perhaps by your hostility to the police. I think that the police action was way OTT, but they weren't trying to ensure that the child was crippled. The Sky story is one sided and garbled. So the police were hunting for a family that didn't want their kid crippled?
Th Daily Mail has what on the face of it is a very credible account. Essentially the parents did their own research and came to the conclusion that the treatment being 'forced' on them was not the best option, but the only option their NHS doctors were willing to provide (because of budgets/politics/bureaucracy). For challenging that decision, they were not made to feel comfortable, to say the least.
http://www.dailymail.co.uk/news/article-2772897/EX...
http://www.dailymail.co.uk/news/article-2772897/EX...
There's a 3 page Exclusive in the Daily Mail today. I've not read it, but the third page has a photo of Ashya in the arms of his mother with a big headline 'The policeman said what sort of people would take a sick child away from their parents?'.
That's from memory, but that is the gist of it.
I am the only person wondering if the NHS are now paying for the treatment as a damage limitation, reputation harm reduction angle? Or that's an additional benefit of the NHS now paying for it?
That's from memory, but that is the gist of it.
I am the only person wondering if the NHS are now paying for the treatment as a damage limitation, reputation harm reduction angle? Or that's an additional benefit of the NHS now paying for it?
Article said:
One doctor was said to have told him: ‘If you continue with these questions your rights to make decisions about Ashya will be taken away from you. We will apply to the family court to have your parental rights removed and then we will give him any treatment we want.’
It wouldn't surprise me in the least if it turns out to be true.With some people delusions of grandeur go to their heads.
They end up behaving like a real life Eric Cartman.
http://www.youtube.com/watch?v=gx4jn77VKlQ
Red Devil said:
It wouldn't surprise me in the least if it turns out to be true.
Indeed, look at the nonsense NHS England trotted out when 'Doctor' Paula Vasco-Knight CBE, NHS England's Lead for Diversity and Equality was found to have changed a job specification to suit her daughter's boyfriend and then given him the job and then seemed to be spending a fair bit of time helping him do his job.Vaud said:
carinaman said:
It follows on from Ashya's brother said about quality of life.
So the police were hunting for a family that didn't want their kid crippled?
Whole bunch of mixed journalism there.So the police were hunting for a family that didn't want their kid crippled?
The parents of Ashya King claim a doctor treating their son warned them the only treatment available on the NHS would leave the five-year-old with life-long disabilities.
and experts warned radiotherapy could leave his son severely disabled.
With radiotherapy, your son will get secondary tumours
Unsure that any doctor could definitely state the above. Probably, yes, but absolute statements? would/could/will, etc
for instance if i were to suture a small wound on you arm and use local anaesthetic i'd have to mention ( to confirm that my medical or advanced practitioner colleague had discussed it with you ) the very very small risk that you might have a seizure as a result of lignocaine toxicity even though it's highly unlikely i'll get any where near the maximum dose and it's be checking to make sure i'm not injecting into a vessel as I go ... it;s also the reason i'll want you on a trolley or in the 'dentist' chair rather than just sat in a normal chair and resting your arm on a sterile field placed on the dressing trolley.
mph1977 said:
also given that when talking aobut side effects and sequalae of treatment to gain informed consent you have to talk about the 1 in 100 000 or 1 in a million side effects ...
for instance if i were to suture a small wound on you arm and use local anaesthetic i'd have to mention ( to confirm that my medical or advanced practitioner colleague had discussed it with you ) the very very small risk that you might have a seizure as a result of lignocaine toxicity even though it's highly unlikely i'll get any where near the maximum dose and it's be checking to make sure i'm not injecting into a vessel as I go ... it;s also the reason i'll want you on a trolley or in the 'dentist' chair rather than just sat in a normal chair and resting your arm on a sterile field placed on the dressing trolley.
think your under-playing that somewhat!for instance if i were to suture a small wound on you arm and use local anaesthetic i'd have to mention ( to confirm that my medical or advanced practitioner colleague had discussed it with you ) the very very small risk that you might have a seizure as a result of lignocaine toxicity even though it's highly unlikely i'll get any where near the maximum dose and it's be checking to make sure i'm not injecting into a vessel as I go ... it;s also the reason i'll want you on a trolley or in the 'dentist' chair rather than just sat in a normal chair and resting your arm on a sterile field placed on the dressing trolley.
Chemo on the brain is almost certainly going to cause some permanent brain damage.
Look it up, this is not some 1 in 100,000 chance stuff.
Scuffers said:
think your under-playing that somewhat!
Chemo on the brain is almost certainly going to cause some permanent brain damage.
Look it up, this is not some 1 in 100,000 chance stuff.
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Gettingtreatment/Makingtreatmentdecisions/Benefitsandrisks.aspxChemo on the brain is almost certainly going to cause some permanent brain damage.
Look it up, this is not some 1 in 100,000 chance stuff.
mph1977 said:
Scuffers said:
think your under-playing that somewhat!
Chemo on the brain is almost certainly going to cause some permanent brain damage.
Look it up, this is not some 1 in 100,000 chance stuff.
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Gettingtreatment/Makingtreatmentdecisions/Benefitsandrisks.aspxChemo on the brain is almost certainly going to cause some permanent brain damage.
Look it up, this is not some 1 in 100,000 chance stuff.
I've looked at,
http://www.macmillan.org.uk/Cancerinformation/Canc...
which covers Ashya's condition, but can find no data on risk associated with the diagnosis or treatment.
Red Devil said:
With some people delusions of grandeur go to their heads.
They end up behaving like a real life Eric Cartman.
http://www.dailymail.co.uk/news/article-2755853/It...They end up behaving like a real life Eric Cartman.
I blame Clarkson for going on about Power all of the time. He should be banned from the airwaves and newsprint.
I think Ashya King's parents made a couple of mistakes.
They do have autonomy to select rational and proven courses of treatment for their son and proton beam is recognised, approved and tested. Indeed, it is available on the NHS, but (currently) to treat eye tumours only. There are plans afoot to make proton beam available in the UK to treat a wider range of tumours.
But proton beam seems to come into its own where the cancer cells are concentrated and clustered in a small area; its therapeutic property of stopping when it hits the target area much less well established when the target area is more diffuse (as was and is the case with the treatment Ashya is now undergoing.)
In discharging Ashya without the knowledge or consent of the hospital, the biggest risk the Kings took in transporting him by ferry from Portsmouth to Spain is that, having lost his swallow-reflex following surgery, had he been sea-sick, particularly while being fed, food or vomit might have entered his lungs and killed him. That risk was heightened all the time he was on the ferry, but present while he was apart from staff with knowledge and equipment to deal with such an emergency.
Also, the Kings didn't take Ashya to the hospital in Spain before he was transferred to the Proton Beam Center; rather, to their own villa in Spain, which they were planning to sell to raise the money for Ashya's treatment. I don't know how long it takes to sell properties in Spain, but time was never on Ashya's side.
With the intentions of Ashya's parents (at that juncture) simply unknown, I think it was a top priority to track him down, and I don't think raising the EAW was over-the-top; withdrawing it, proportionate and responsible once it became clear that Ashya would once more be under professional medical care at the Spanish hospital.
It is unfortunate that Ashya was separated from his parents for a period of time, but I'm not sure that could really be avoided.
They do have autonomy to select rational and proven courses of treatment for their son and proton beam is recognised, approved and tested. Indeed, it is available on the NHS, but (currently) to treat eye tumours only. There are plans afoot to make proton beam available in the UK to treat a wider range of tumours.
But proton beam seems to come into its own where the cancer cells are concentrated and clustered in a small area; its therapeutic property of stopping when it hits the target area much less well established when the target area is more diffuse (as was and is the case with the treatment Ashya is now undergoing.)
In discharging Ashya without the knowledge or consent of the hospital, the biggest risk the Kings took in transporting him by ferry from Portsmouth to Spain is that, having lost his swallow-reflex following surgery, had he been sea-sick, particularly while being fed, food or vomit might have entered his lungs and killed him. That risk was heightened all the time he was on the ferry, but present while he was apart from staff with knowledge and equipment to deal with such an emergency.
Also, the Kings didn't take Ashya to the hospital in Spain before he was transferred to the Proton Beam Center; rather, to their own villa in Spain, which they were planning to sell to raise the money for Ashya's treatment. I don't know how long it takes to sell properties in Spain, but time was never on Ashya's side.
With the intentions of Ashya's parents (at that juncture) simply unknown, I think it was a top priority to track him down, and I don't think raising the EAW was over-the-top; withdrawing it, proportionate and responsible once it became clear that Ashya would once more be under professional medical care at the Spanish hospital.
It is unfortunate that Ashya was separated from his parents for a period of time, but I'm not sure that could really be avoided.
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