Does the NHS work?

Having just returned from a week in Chicago, which was spent with a number of families from Northern Ireland who live in exile there with their sick children I posed myself a more fundamental question. That is in relation to the standard and levels of care provided by health service. I approached the trip with a measure of scepticism, believing that few fall through the cracks. Having been approached in the Autumn to provide professional services to the Billy Caldwell Foundation (www.billycaldwellfoundation.com) – a charity helping children with severe, intractable epilepsy – there was a healthy doubt in my mind that Billys story was an isolated case. Now, I am not so sure and I am left wondering how many more cases exist out there of children who were given no hope and who were sent home to die? Taking it a step further, I now wonder how many have died or are dying supposedly under the watchful eye of the National Health Service?

The Billy Caldwell Foundation was established in October this year by Billy’s mum Charlotte and launched at Parliament Buildings by the First and Deputy First Ministers. Billy is a three year old boy from Omagh who has severe, intractable epilepsy and Angelman’s Syndrome. This is Billy’s Story (more below).

Watch this camera phone clip of Charlotte and Billy recorded last week in Chicago. Apologies, but it is not the best quality. http://uk.youtube.com/watch?v=1ymlHR3iFjU

When Billy was 4 months old he awoke from his sleep stared wide-eyed for thirty second and then seemed to doze off. He repeated this two more times that night at thirty minute intervals. Charlotte rang the out-of-hours doctor who directed her to her local general hospital to get his ‘stats’ checked out. The receiving medical staff there detained him overnight and transferred him by ambulance the next day to the Pediatric ward in the Erne Hospital, Enniskillen. On his way there, Billy had his first major convulsion which continued for six hours. Charlotte prepared herself that Billy was going to die.

Between seizures, Billy was transferred to a Belfast hospital for further care under a specialist Neurological Paediatrician. Billy remained there for the next fourteen weeks where he experienced the full range of seizures; petit-mal; grand-mal; tonic-clonic; absence attacks and status seizures. Drug after drug was administered without success. These included Topramax, Phenobarbitone, Sabril, Medazalim, Chloral Hydrate, and many more. On one occasion, the specialists put Billy into a deep anaesthetic sleep in the Paediatric Intensive Care Unit, in an effort to end the seizures. This was to no avail.

Billy was reduced to a lifeless doll with no smiles and no head control, just his large blue eyes staring back out. Eventually the consultant told Charlotte that he could do no more for Billy. Charlotte was told by the specialist that the most she could do was to take Billy home and make him comfortable. She was told that he would never talk, walk or even sit up. In fact, their prognosis was that his death was inevitable and likely within six months. When the doctor prescribed Morphine for Billy, Charlotte believed this could only shorten his life so she refused it.

Charlotte, believing there was hope out there, pleaded with the consultant to refer Billy to Dr. Helen Cross in Great Ormond Street Hospital, who she knew from research on the internet, was the leading specialist in the UK on the subject of children with seizures that were difficult to control. He agreed to do so but in an Insight programme broadcast late last year, Dr. Cross stated Billy had not been referred to her until eighteen months after discharge and only then after intervention from the Health Minister. The delay, one must bear in mind, in terms of seizures may have led to further neurological damage and developmental delay.

Charlotte then took things into her own hands and started to do research on the internet where she found Children’s Memorial Hospital in Chicago and Dr. Nordli. In the US, a doctor who specialises in the care of children with seizures is termed an ‘eptologist’. There is no such specialist in the UK. Charlotte started to fund-raise soon after her initial contact with Dr. Nordli’s department. She raised £200,000 http://www.billycaldwellfoundation.com/fundraising_1.php to take Billy to the US and meanwhile Billy was continuing to have multiple seizures and with increasing frequency. He was beginning to go blue during his seizures, indicating that his oxygen levels were dropping to a dangerously low level during the attacks. So much so, that the paramedics in the ambulance were having to ‘bag’ him.

Back in Belfast the consultant’s response to Billy’s deterioration was to add further medication with the inevitable side effect of making Billy more and more drowsy. He was already on a cocktail of drugs and it was only when Charlotte had booked flights to the US and arranged initial assessment that Billy was referred to Great Ormond Street.

On 11th September 2007, Charlotte sat in Dr. Nordli’s office in Children’s Memorial Hospital, Chicago and asked him the question that was most important to her and to Billy.

“Is there hope for Billy?”

“ABSOLUTELY ! ” was Dr. Nordli’ clear answer, without any hesitation.

Dr. Nordli started Billy on the Ketogenic diet and weaned him off the more toxic drugs. He established an exact diagnosis for Billy’s condition (Angelman’s Syndrome) and in addition, the intensive physiotherapy, OT and speech therapy has proven to be very helpful to Billy’s development. Over the last 9 months his major seizures have been abolished. He only rarely has a minor one. He can now take 60 steps with minimal support. He can say ”Mum”, which he uses to great effect when he wants fed or when he is tired. But most of all he can communicate best with his beautiful big blue eyes.

This is a story of hope but also one which poses serious questions about the NHS.

  • DK

    It shows that the American system is one of who pays gets treated. This means that in cases like Billy’s the US excels, but if you are a poor person with a broken wrist, the NHS beats the US system hands down.

    Choice vs. one-size-fits-all. Not sure if there can be a middle ground, but we do have the option of flying to America for rare treatments, while the Americans are stuck unable to pay for mundane ailements.

  • kensei

    There are errors in there, but she gets the top UK specialist followed by the top US specialist and raises a lot of money to get them? I’m not really sure we can generalise here. Would the average US citizen been any better off?

  • Anne Monaghan

    That fact that Billy didn’t get to see the top UK specialist is one of the main points. Charlotte had asked for a referral and was told one had been made, when the Insight programme shows clearly Dr. Cross hadn’t heard of Billy’s case until Charlotte was just about ready to go to the US. If Billy had been referred the current situation may not have arisen. I hope to get a copy of the Insight programmed uploaded to http://www.billycaldwellfoundation.com as soon as, if UTV will allow it.

  • susan

    Anne, thank you for your excellent report.

    I remember reading a story in a Tyrone newspaper published shortly after Billy and Charlotte arrived in Chicago that outlined in even more disheartening detail all the roadblocks and red tape Charlotte encountered trying to get care for Billy at home — and included at least one interview with a local family that had recently lost their battle with pediatric epilepsy.

    A point on US healthcare — it’s a bit too harsh to say only those with funding receive treatment. I was just checking, and Children’s Memorial in Chicago is Illinois’ largest provider of Medicaid services to children in Illinois, with slightly over half of its patients being eligible and receiving Medicaid. I also saw a quote that the hospital and its physicians absorbed $61 million in unremimbursed care and costs last year.

    It seems clear that both Charlotte and the Chicago physician overseeing Billy’s care are one in a million. Not only has Charlotte saved her own child’s life, no doubt her incredible hard work and determination will someday save other families from being forced into making a choice between their home and their child’s life.

  • Anne Monaghan

    Space prevented me from adding that just last week Children’s Memorial placed another child from Northern Ireland on a special research programme which entails having many costs met. The other families still need to raise £100,000/annum however, which is one of the reasons the Foundation was established. See the fund-raising section on the Foundations’s web site for more information.

  • susan

    I did, Anne — the Christmas Ball Dec 22, and the House Raffle.

    Seeing that, and a quick look at the profiles of the foundation’s board members — It seems to me a lot of good people on both sides of the pond have devoted themselves hammer and tongs, heart and soul to helping these children and their families, including you.

    Thanks again for your report.

  • Ann

    Anne, do you mind me asking were you ever in the womens’ coalition? If not I’m wondering where I have come accross you before?

    You know I too have a child with severe epilepsy, and the kinetic diet has been used here too. Infact with great success. I believe we did hear about this child on the radio not so long ago.

    The NHS works Anne for people with epilepsy. We too have been through every drug you mention, all of them with side effects, sometimes the effects are worse than the cure.

    I wish the child every good luck that I can muster, and spare a thought for his parents. When your child has no stability from seizures and you are with him/her 24/7 a parent can get down and tired. I hope they get the support they need.

    And still his parents should have faith in the NHS, it has made some vast improvements in NI especially. One of our main female doctors isn’t practicing now, but she did great work in the childrens’ and we do get a marvellous service now. I’m sure his parents will tell you the great people involved in our local hospitals.

    I don’t know about the US comparison, I’m not fully up to date on the service there.

    Thank you for this post on a subject usually hidden.

    Ann

  • Anne Monaghan

    Hi Ann, yes, I was in the Coalition. As most of the parents I have met had faith in the NHS, as indeed did I (and still do in regards to general medicine) the difference in Billy when he is in the US compared with NI is unbelievable. Billy certainly does regress without the intensive therapies. I’m not sure if we are talking about the same diet but perhaps its as specific a problem as the consultant in charge?

  • Ann

    I’m not sure if we are talking about the same diet but perhaps its as specific a problem as the consultant in charge?

    Yes I believe we are. I knew of a few kids in the Royal some time back who had helmets made due to banging their heads against their cots even when they weren’t fitting, and the only way to control the fits was through diet. Some young women have fits controlled through the pill too. The monthly cycle can be a trigger for such things. There are a whole range of ways to control fits, including some social factors, ie if the family background is unstable for instance.

    The consultant in charge has a lot to do with anyone in any hospital with any illness, but you can always ask for a change, and they’ll change the consultant without any problem.

    Nice to see you posting here, regularly I hope if this post is anything to go by.

    Thanks again.

  • Anne Monaghan

    Thanks Ann. Mick has kindly given us some space to host and generate the debate and we hope to post regularly between now and Christmas.

  • Ann

    Anne, since you’ve been in the womens coalition I know that you will understand what I’m going to say next. I have been subject here to serious abuse, as a woman. I’ve been told my mother should have flushed me down the toilet because I did not support abortion. Kensei has insulted every comment I’ve made, I simply cannot take anymore, so I won’t be commenting anymore.

    I sincerely hope your experience is different. I posted to comment not to be upset as I am today and mick fealty says he is interested in civility, he is not. His blogger kensei has subjected me to the utomost abuse simply due to my gender.

    I cannot do it anymore, it was nice meeting you, I hope your tenure here is better than what I’ve experienced.

    Political opinions are for men, not women struggling with eplipetic off spring who comment and try ot be civil.

    good luck

    ann

  • susan

    Ann, I hope you will reconsider. I haven’t had a chance to read any posts on slugger today save this one, so I can’t comment. Only you know what is best for you and your family, and as a mother of four — three I’m raising, and an infant daughter I buried — you have my best wishes and respect, whatever you choose to do.

    I hope you will see the link I’m trying to post here regarding the Caldwells. I remembered it was the Heralds — Tyrone and Ulster — that chronicled the family’s plight. The Heralds also sponsored an earlier charitable trust set up to help fund Billy’s care.

    How two families can have such different experiences within the NHS is as usual beyond me, but perhaps the information and experience you’ve shared will someday help you each other.

    only the best, Ann — stay safe, stay strong.

    Mise, Susan

    The blasted link won’t post, I am going to try to send it separately. Or I will email it to you.

  • susan

    Ann, I don’t know why the Ulster Herald is coming up as “blacklisted, access denied” when I try to link it, but if you Google Mark McKelvey Billy Caldwell Ulster Herald the article will come right up. I would imagine you would be familiar with staff at the Royal mentioned in the piece by name.

  • Ann

    susan thank you for that, I see my mistake, this diet is the Ketogenic diet, there is another diet based on fats…kinetic I think its called, my mistake. Yes I fully understand about a cocktail of drugs and how they disrupt learning.

    Thank susan for the wishes but I do feel its following me from thread to thread….

    When I comment hey presto kensei is there biting at my heels. I can’t deal with that. We’ll see how it goes.

    Bless you susan.

  • Comrade Stalin

    Swapping the healthcare system in the USA for what we already have in the UK would swap easier access to specialists for relatively rare diseases, in exchange for a generally lower standard of health care as measured across the entire population. If Billy had a serious but more easily diagnosable and treatable illness, and his parents had no insurance, the standard of care received in the US would be lower, and this is a fact borne out by the infant mortality statistics between our two countries. I think it’s most unfortunate that access to the right specialist in the UK was not forthcoming, but I don’t think this undermines the whole idea behind the NHS.

    Ann:

    I sincerely hope your experience is different. I posted to comment not to be upset as I am today and mick fealty says he is interested in civility, he is not. His blogger kensei has subjected me to the utomost abuse simply due to my gender.

    Advance the cause of women by melting into a puddle when you’re “insulted”, and then post on here whining and looking for sympathy. Way to go.

    susan:

    A point on US healthcare—it’s a bit too harsh to say only those with funding receive treatment.

    So why do individuals and employers in the US go to the trouble and expense of funding healthcare plans, then ?

    I also saw a quote that the hospital and its physicians absorbed $61 million in unremimbursed care and costs last year.

    Sorry, but that’s a factual error. It is the people who pay for their insurance premiums, and the people who pay taxes, who absorbed the cost of the unreimbursed care. Hospitals cannot run at a loss. The funding has to come from somewhere, whether it is charities, the government or (most usually) the health insurance plans of the people who can afford to have them.

  • Ann

    Advance the cause of women by melting into a puddle when you’re “insulted”, and then post on here whining and looking for sympathy. Way to go

    I’m not looking to advance the cause of women, simply to post without my gender being thrown in my face.

  • percy

    stick around Ann if you can, most of us respond to what you’ve written, not to your gender.

  • Ann

    Thanks P. Ken has apologised.

  • Comrade Stalin

    There’s a dead easy way to fix this, that avoids all the drama queen stuff – post under a name that isn’t obviously female and don’t tell anyone you’re a woman. You’re posting using an anonymous email address anyway.

    Yes yes, you shouldn’t *have* to. But if you’re genuinely interested in finding out what’s going on without prejudice getting involved, then the decision is easy to make.

  • Anne Monaghan

    Hi Ann, I am just wondering where the Ketogenic diet was used in NI? Which hospital was it administered from?

  • Ann

    Anne, it was used in the Royal hospital for sick children. I distinctly remember a mother telling me that is what her son was on. I believe her consultant at the time was a lady doctor called elaine hicks. A miracle worker she was. There is also a helpline, run by an epilepsy nurse called Ena Bingham, their number is in the book, or call the hospital. They will tell you more. Ena is a marvellous woman, an absolute star, and top drawer worker.

    I remember Elaine Hicks used to run classes for parents of children with epilepsy, she would explain the condition and outline the treatments at night in the lecture theatre for parents on her own free time. Ena was there too. They also helped with education of your child, ran dentistry in the royal for her epilepsy clinics due to the affect of the medicine on teeth, the lot. We had an excellent service, and thats going back, the adult service is lousy, but for children it is first class.

    There was also a man dr there, whose name for some reason escapes me, but Ena will know.

  • Ann

    This diet I thought it was called kinetic, but this looks like it is it. the diet was fatty based, it consisted of fat being spread on the food or something, it looked gooey. You know how parents are sharing their stories, and this mum told me the diet was difficult for her son to stomach. It worked a treat, but then for some reason he couldn’t keep it down, and the fits came back, but it was the only thing that worked.

  • Anne Monaghan

    No, it is definitely the Ketogenic diet see this article on Epilepsy Action’s website – http://www.epilepsy.org.uk/info/ketogenic.html

    It is a prescribed diet and must be carefully controlled. I have seen Charlotte measure exact quantities of specific foods and Billy must eat it all. The diet has resulted in Billy only needing one prescribed drug, Lamictal.

  • Ann

    yeah we used lamictal, its one of those drugs that for us we had to use extremely high levels of. Still better than a cocktail, which can be hugely imparing. Yes, indeed it is a prescribed diet, I clearly remember this mum, (she was an old school friend I’d lost touch with, and met her there, but haven’t seen her in years), anyway I remember her going to the dietician to get instructions before she went home with her child. By the time he left hospital he was without fits, and without helmet, but then I got a call from her to say he was back in due to being unable to digest it. I’m not sure what happened after that.

  • Ann

    Of course anne, it only works in some forms of epilepsy, not all…. Like surgery and tablets and the pill. There is a range of methods for controlling seizures, and unfortunately its not a cure for epilepsy sadly.

    Do give them my regards.

  • Anne Monaghan

    Ann, As I understand it Billy was never offered the proper KGD here in NI. Somewhere along the line the policy must have changed.

  • OC

    As usual, it works like this:

    The American working- and lower-middle-class public gets screwed so that the world doesn’t have to be.

    You’re welcome.