People Power brings a result for baby James


This story started last Sunday in the Sunday Life, but took on a powerful emphasis after being aired on the Stephen Nolan radio show. It concerns a 13 month old baby, James Hynes who is suffering from leukaemia. James’s father told listeners on Monday that all treatment had to finish as he had not responded to therapy, and he had only weeks to live. The family trawled the internet and found a doctor in Germany who was willing to perform a bone marrow transplant, even though baby James was not in remission. The family initially took to the local media for help in raising the £100,000 for the operation. In Nolan’s words, the BBC phone lines went into ‘meltdown’, and he said that they had received literally thousands of calls, texts, letters and messages from listeners willing to donate money, time or anything else that might help the family. One local listener who is originally from Germany offered her services as interperter and was very helpful to the family.

The upshot of the enormous public response was described by Nolan as a U-turn by the local Health Board who announced this morning that they had re-considered the case and were arranging an air ambulance to take the child to Germany for surgery and would be paying for the operation.

While I am certain that this was the most excellent news for this particular family, it is quite scary to think that it takes this level of people power to have care provided. If it is right to provide the transplant now, was it right when they decided against it last week? I think that there are major moral and ethical questions raised by this story that have yet to be aired and answered.

The scenario, as described by James Sr is certainly stark:
The German doctor says there is between a 20pc and 30pc chance that the operation will be successful. But at least that’s some hope – we just have to try. The doctors here have told us a transplant operation could kill James. But what’s the alternative? Just leave him to die and try nothing?”

  • Pete Baker

    The child is 13 months old.. doctors have already decided that the only possible treatment would, most likely, kill the patient.. the BBC steps in to encourage public outrage, via the all too willing Nolan Show, and the NHS caves in to the public pressure generated by the BBC.. and agrees to pay for private treatment in a clinic in Germany..

    I’m at a loss to decide who is most to blame for that chain of events – but I’d put the Nolan Show close to the top of that list.

  • Pete Baker

    Just to add.. the NHS will now be footing the bill of £100,000

  • Miss Fitz

    Pete
    That information is in the post.

    “The upshot of the enormous public response was described by Nolan as a U-turn by the local Health Board who announced this morning that they had re-considered the case and were arranging an air ambulance to take the child to Germany for surgery and would be paying for the operation.”

    I have mentioned the cost of the operation and the fact that it is now being paid for.

  • Pete Baker

    My apologies, Miss Fitz.. I was looking too closely at what was visible above the fold.

  • Brenda

    If there was hope for your child you’d take it. These are awful stories, not so long ago the parents fighting hospitals for treatment for their child when the doctors did not want to.

    Who is right who is wrong. No one All parents want the best for their kids, god help those who are fighting these battles. They’d break your heart.

  • Pete Baker

    Indeed, Brenda.. the point is, though, that that decision shouldn’t be the responsibility of the parents of the patient.. it should be the doctors’.

  • Donnacha

    Fair point Brenda. It’s easy enough to scoff and say it’s all a big manipulation by the media, tugging at heart-strings and so on, but if the child was mine I’d want to do everything, too.

  • Alan

    We won’t all have access to alternative therapies, we won’t all have access to the emotive background story, we won’t all have access to Nolan’s capricious and fleeting interest.

    As a parent, you will do all you can. As a doctor you have to make the right decision, despite Nolan and despite the story.

  • Miss Fitz

    I think what concerned me most, hence the post, was the turn-about by the Trust and its decision to pay the bill. Does it call into question the original decision, and are all medical decisions subject to public opinion and such pressure?

    It brings back into focus the idea that in our NHS system there are limited resources, and decisions as to who can benefit from treatment are rationed by neccesity. Has the Trust made a rod to beat its back by this decision as other families may go down the same road in order to obtain therapies?

  • Brenda

    miss fits,

    fair point, but after all look at the drug for early breast cancer. The women fought and they got,(well mostly). If you had breast cancer wouldn’t you like to avail of this drug? Made more freely available by the fight of other women, a bit like the pankhursts LOL but you get my point?

    How about the young man with the strain of (sorry i don’t know the name of it, strain of mad cow disease) You know who I mean? His quality of life improved.

    If this child has a fighting chance then shouldn’t it have it?
    Doctors don’t always make decisions in the best interests of the patient, they have to consider money also.

    Who among us would envy them their position.

  • Miss Fitz

    Brenda
    The difference with Herceptin, was that it had a proven record of success in certain types of breast cancer. http://news.bbc.co.uk/1/hi/health/5058952.stm

    As a therapy, it was a new departure and works as an adjunct to other therapies.

    The difficulty with the story of this child was that he had been deemed unsuitable for bone marrow transplant as he was not in remission and no UK doctor would perform the surgery.

    Don’t get me wrong, I undertand 100% how a parent will fight to the bitter end for their child, but where is the line ever going to be drawn between informed medical decisions based on clinical expertise and public pressure?

    I just feel its a dangerous area Brenda, but take all of your points as valid. In the case of variant CjD, you say that quality of life has impproved. But has it, or have the parents been able to hang on to their child at any cost even if that cost is a poor quality of life?

    With medical advance, we have forgotten that there is a natural cycle to life. We are born, we live, we die. All the medicine in the world wont be able to make us live forever, and maybe more work needs to be done in helping us appreciate the time we have instead of seeking time beyond that.

  • Miss Fitz

    Johnny
    That is not playing the ball. Please adhere to that ad hominem rule.:)

  • joc

    Miss Fitz,

    Some very good arguments, and ones that I would agree with.

    I would also say, though, that pioneering techniques have a very low success rate initially.

    I recall the news about the first liver transplant years ago, and yet I am aware of a recent one for someone I know that looks like it has gone well and hopefully significantly extend someones life.

    In the case of vCJD, there are going to be a lot of treatments, with varying success until a reasonable therapy, or even cure is found. Like any research, its very expensive at the start.

  • DK

    As a parent, I would make an appeal via Nolan or whomever else could help. Even if the chance was 1% I’d go for it. The loss is total.

    And chances are notoriously hard to get right as each patient’s case is different. From my experience you get told that they will either make it or not and they refuse to get into chances.

  • Rory

    The NHS has an Ethics Committee where issues akin to the above can be referred. It is true however that limitation of available resources is balanced against the likeliehood of treatment being successful and I fear that in this case the decision of the doctors would have prevailed.

    The dilemna for the parents is more clear cut. They must do all they think best for the child. If they were wealthy they could fund the treatment themselves, or perhaps a wealthy benefactor could have stepped into the breach. Lacking that it is heartening to see the public response and to be reminded that a great caring body in society exists.

    But in the end I share the deep misgivings of Miss Fitz and Pete Baker and I consider Nolan to be shockingly irresponsible and manipulative in milking such tragedy for the benefit of ratings. A modern day Elmer Gantry, he seems to me.
    He is playing with fire and I fear it is the child and his parents who will end up being burned.

    Miss Fitz’s reflections on the necessity to be able to accept that life is finite and to be able to die ourselves and allow others to die when it is timely need be pondered. Holding on to a loved one because we cannot bear to face the pain of loss can be a very selfish act and it takes a brave good friend to tell us that we must now resign ourselves and let go.

    I am sorry that Pete Baker’s remarks caused him to lose the adulation of Johnny as a father-figure. All a wee bit too East of Eden for me I’m afraid.

  • carlosblancos

    Pete your points are informative and well made, and its refreshing to read analysis beyond the usual Nolan populist nonsense.

    On the other hand, 100K, while it seems a lot, isn’t much of even the RVH budget I’d imagine.

    Whilethe NHS shouldn’t pay for private treatments that probably won’t work, its hard to argue against it when we consider that 100K isn’t much out of the RVH budget, its a one off case, and, the child may survive.

  • I have no doubt that I would similarly move everything to have one of mine treated too.

    But it’s important to remember that health service staff are constantly being asked (on our behalf) to make tough ethical decisions about the deployment of what are clearly finite resources.

    The result is a good one for the family. No doubt. But one wonders what chaos it may have unleashed amongst the professionals who presumably made the first decision in good faith.

    Shades of the row over the Joe Duffy Show’s role in the widespread public panic over the apparent ‘abolition’ of statuary rape perhaps: or at least to the extent that the focus seems to have been weighted towards public feeling, rather than giving space to teasing out the ethical dilemma behind the original decision.

  • Brenda

    I remember esther rantzen coming out in favour of a child who had some illness. I think it was the first ever such scenario within the UK. For the life of me I cannot remember what the illness of the child was, but the child was from NI, and it went to cedar lodge school here in Belfast. I remember that because I knew a child who went there and it had severe health problems, and only recently the rantzen show, thats life and the belfast child came in to the conversation.

    Ultimately the child died. No one can preserve life and play god, but a life can be ended by a doctor or a team of doctors whose main concern at times is a decision based on resources. Even the ethics committees can reflect this. There is a balance in play.Sometimes the media raises money not just for medical treatment but for holidays for a child and its family who have a fatal illness. Only the other evening a family with three boys on bbc news, and now they all have the fatal strain. The family are paying for a holiday themselves while all the boys are well. But the media does have a role to play.

    If it were my child or the child of someone I knew, and they were using the media as a pressure group to have things changed as in Sarahs law, or to get medical treatment then what is wrong with that.

    The fact that nolan may have milked it for ratings, well its a balance the parents need to make along with an informed decision. Nothing is free in this world, or we wouldn’t be having this conversation. Everything has a tag to it.

    Yes there will be scams, even those who raise money fraudlently, but it is not the right decision to throw the baby out with the bathwater.

  • jone

    This Radio 4 series, Inside the Ethics Committee,is worth a listen as regards some of the issues rasied above.

    One of the points made in the latest programme is that if money has to be made available for exceptional cases it almost inevitably ends up coming out of budgets for less media friendly specialisms ie. geriatrics and mental health.

    http://www.bbc.co.uk/radio4/science/ethicscommittee.shtml

  • Zorro

    The parent’s response was/is fully understandable but I have to fully agree with Pete on this one.

    The Biggest Show in Town messed up on this one in a very sad and sickening way.

    The sooner that William fella takes over permanently from

  • Brenda

    zorro, petes response is that the decision should belong to the doctors. do you agree with this?

    IMO too many professionals can get things wrong for a life or death situation to go unchallenged. If the doctors in the UK do not want to perform the procedure because of the low survival stakes and another group of doctors say they will do it, despite the low survival rate, which group of doctors do you go with?

    I go with the father, if his child is going to die, here is a fighting chance. Where theres life theres hope.

    Good luck to it.

  • stephen nixon..(ava nixons dad)

    i have read all the comments and im shocked to learn that any of the public would argue the point of saving a childs life over money.i dont know what people are talking about when they say that uk doctors wouldnt carry out a bone marrow transplant and that a doctor from germany would.the doctor from germany carried out a different type of transplant that the uk does not have on their procedure list.This transplant that dr handgretinger has done for my child ava may be a revolution in transplantation.for the record dr handgretinger has not lost a patient through transplant in three years and his long term survival rate at the moment is 30% and i think thats a damn good percentage when you were givin 0% in the uk,and we have since found out that other hospitals around the world are very interested in dr handgretingers work because of his results so please read up before makin judgement.by the way ava is doing very well at the moment the transplant went as planned and she is now recovering so i thank stephen nolan and all the media who have helped us get here not forgetting the nhs who finally agreed to fund her transplant. ..

  • Animus

    Stephen

    I don’t think anyone is arguing that a child’s life should be decided purely in financial terms. What we are discussing is whether pressure by popular figures should force a u-turn on decisions made by health professionals. After all, for every person who gets additional funding, someone one else (or several someone elses) will not get treatment. There is not an unlimited pot of money available so someone else will have to do without. No one is saying that they don’t value the child’s life. And were my child in the same shoes, I’d fight to get the best treatment possible. Most parents would.

    Glad to hear your daughter is doing well, and hope for continued good progress.