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September 2013

And People Still Really Need Convincing About This?

September 12, 2013

danielcimaphotoTHIS POST CONTAINS IMAGES OF UNTREATED HYDROCEPHALUS CASES IN CHILDREN WHICH YOU MAY FIND A BIT UPSETTING SO IT’S UP TO YOU IF YOU READ IT; JUST WANTED TO WARN YOU FIRST!

If you’ve read this blog before, you’ll know that I have hydrocephalus and that I have a shunt which basically, keeps me alive.  You’ll also know that during my surgery-free eighteen months I’ve been working on a project to get shunts sent to countries which are lacking in treatment for hydrocephalus, which is a massive problem and a particularly cruel one as it affects mainly babies and children only; simply because if left untreated, they die before adulthood.  I am currently awaiting surgery next week for my own shunt which is malfunctioning so have been unable to work on this for over a month now but I hope to be back on it soon.  What has become very apparent to me since I started work on this is the restrictions we have placed on ourselves to prevent helping other countries, which is totally ironic seeing as the government seems to pride themselves on providing foreign aid.  Chucking money at a problem doesn’t always solve it, however and in the case of hydrocephalus treatment, there seems to be a real lack of not only money invested in it but actual motivation to do anything about it.  I think it scares health ministries because it’s ‘specialist’; it’s the brain, so it’s scary.  There is a fear in some cultures of such a condition; it’s associated with demons and the child is often abandoned as a result of pure fear on the part of its family.  There are not many neurosurgeons in affected areas – sometimes none at all – and the shunts needed can be very expensive for poor families and poverty-stricken countries.

Go Vap Orphanage looks after hundreds of children like this - shunts need to be donated due to high costs.

Go Vap Orphanage looks after hundreds of children like this – shunts need to be donated due to high costs.

Here is where the UK and any other country in the world which has a good hydrocephalus treatment system in place could help.  But I’ve experienced now first-hand the frustrations of not only hospitals and the surgeons in them which want to donate their unused stock to me, but even the shunt manufacturers themselves, due to what are (in my opinion at least) overly-rigorous checks, guidelines to adhere to and restrictions regarding the donation of expired medical products.  I appreciate that we need to be careful.  I would never want to send out equipment which is faulty, which is damaged or which is dangerous in any way and neither would the neurosurgeon who is helping me on this project.  Of course checks need to be made, audits may need to be performed and in some cases, shunts will not be suitable.  But the real problem lies with the guidelines issued by the NHS and the  World Health Organization (WHO).   For instance, point 7 of the WHO Guidelines For Healthcare Equipment Donations reads as follows:  ‘There should be no double standard in quality. If the quality of an item is unacceptable in the donor country, it is also unacceptable as a donation‘.   Expiry dates mean everything.   Once a product is expired in the UK, it cannot be used, in adherence with NHS guidelines.  The product may be perfect.  It may be useable.  There may be absolutely nothing wrong with it.  But try sending that product over to the Congo where there is a dying child desperately in need of a shunt, any shunt, and it’ll be stopped at customs.  Because we wouldn’t use it in the UK.  The fact that we have thousands of brand new, state-of-the-art, shiny shunts available on tap, for free, for anyone who needs one here courtesy of the NHS isn’t taken into consideration in the WHO guidelines.  The countries who need these perfect shunts don’t have another option.  There is no choice, other than certain, slow, agonising death for the child concerned.
Recently The Sun newspaper covered the story of little Roona Begum from India, who had advanced hydrocephalus; you may have read about it.   Two students set up a public campaign to get funding for her surgery, which was performed earlier this year, after pictures of her were circulated widely on the public media.

Roona Begum - a shunt was found for her and surgery was performed.

Roona Begum – a shunt was found for her and surgery was performed.

What I found interesting was reading the many hundreds of comments left by readers under the articles about Roona.  It was clear that many of them didn’t even know this condition existed and were up in arms that nothing had been, up until now, done for her.  It was fantastic that she was able to have the surgery and is – so far – doing well although many thousands still need to be raised for further surgeries; it was never going to be a quick recovery process with hydrocephalus that far advanced.  But the whole story leaves a bad taste in my mouth.  Not that Boona got treated – thank God for her and her family that she did – but that she is just one child.  One child out of thousands and thousands who was lucky enough to have the spotlight shone on her and as a result get help.  This has been going on for years.  There are lots more looking exactly as she did.  Right now, across the world there are children lying in huts, unable to move, hideous sores on the backs of their heads because of it, in pain with no access to medication to ease it, slowly dying.  Just because the media hasn’t covered all their cases doesn’t mean it’s not going on, every day, right this second.

Governments need convincing, guidelines need changing

Once my surgery (surgeries?) is/are over, I shall be cracking on with the proposal for the Vietnamese government which I am working on with Lewis Thorne and Kim Nguyen Browne. Kim is working with the Government side and Lewis and I are putting the proposal together; we are aiming to prove once and for all that both economically and ethically it is absolutely not beneficial to continue to leave these children untreated. hydrocephaluschildballoonThe cost of everyday nursing, clothing, food, medications (if there are any) and accommodation for terminal children until they pass away is huge compared to the comparatively minimal cost of a shunt surgery. And if many of the shunts can be donated, recently expired products from the UK, the US, Canada and Europe which have been passed as safe to use, the cost to these governments receiving them will be even less. If this proposal succeeds, we intend to roll it out to other health ministries and governments in developing countries. But the WHO and the NHS may need to be flexible and introduce a bit of wiggle-room regarding their restrictions on expiry dates. At the end of the day, as long as the products have passed some essential checks to ensure their safety and useability, they should be available for donation. They should not get stopped at customs. Codman UK should NOT be questioned on their ethics for wanting to donate expired shunts; this is what is happening there right now, hence the delay in getting the Bactiseal shunts to Kenya – and these are shunt manufacturers who are being challenged!!  The only ethics that should be questioned are those of the people wanting to place a block on donation and instead send all the good shunts to UK landfill, thus ensuring that hundreds of children across the world will not get the treatment they deserve.
It’s all very well for people-in-suits to sit at their desks here, in their plush offices, after a nice lunch, and make such decisions. If they were out there, if it was their child, if they had no other option, if there was an offer of help in the form of a donated shunt, they’d take it. You can bet your life they’d take it. This picture features at the beginning and end of this post was kindly offered to me by a very talented photographer, Daniel Cima. You can see more of his amazing  work at www.danielcima.com. This image sums up the horror and the pain – both physical and mental – of the children and their families caught up in the nightmare of untreated hydrocephalus.  I couldn’t tear myself away from it when I first laid eyes on it.  As I sit here and look at this image, my own shunt is failing and therefore I’m looking at it with some real understanding of the pain that child is feeling. Lying down is agony.  But I have the reassurance that in a weeks time I will be in hospital and in a couple of weeks I’ll most likely have a new shunt. I have hope. I have a light at the end of the pain tunnel. And God do I feel guilty when I look at that photo. I want to run over there, hand them a shunt and escort them to a surgeon. We have hundreds of shunts here which will not be used. They’ll be thrown away. Please, WHO and NHS, have some sense when we approach you later this year. Sometimes guidelines are helpful and sometimes they spill over into over-cautious and restrictive. Please identify where you need to relax the reins and realise that just because a shunt would not be used here, doesn’t mean that it can not be used elsewhere.  If the picture below cannot convince them that things need to change then I don’t know what else we can do.

 

Diary Of A Suspect Shunt Malfunction: Surgery Next Week! Yay!

September 12, 2013

This is a run-on from the last Diary; it was getting a little long to follow and now I have a treatment plan so I thought it would be best to cover the actual treament/results here, to avoid endless scrolling in the other post!

Pre-Surgery

Thursday
Yesterday was a bad day.  My head was bad before I went to sleep and I woke up with it feeling just as bad.  Nothing helped it and by nine that morning I was starting to think I’d have to go to A&E.  I called my neurosurgeons secretary and spoke to her, as this is what the hydrocephalus nurse, Simon, had suggested I do if things got bad.  I spoke to her and she told me to go to my GP if possible, given that my local A&E department has not been  great at dealing with shunt problems before unless they were real emergencies, like obvious shunt infections.  My doctor was great; Dad took me there and she wrote a letter to the hospital whilst we were with her, faxed it over and then called them on the phone.  By two that afternoon she called back to say that I was now on the list to be brought in and I’d be hearing from the hospital in a couple of hours, which I did.  They have scheduled me in for admittance next Wednesday.  It’s a week away but they feel confident from my symptoms that it shouldn’t escalate into an emergency before that time.  If it does, I’m to go to A&E and they’ll haul me in from there.  I’m having ICP monitoring done first and then, depending on the results from that, a possible second surgery to correct whatever had gone wrong (if anything) with the shunt.
It’s a great relief; I feel I’ve done my bit.  I’ve tried to avoid the surgery, have taken care of myself, tried a pressure adjustment, rested and taken it easy and now that none of that has made the slightest bit of difference and if anything, I’ve got worse, it’s time to bring the surgeons in!  It’s funny how I was so determined after my thirty-ninth birthday to not have another surgery before my fortieth and now that it looks as though I’ll be having not one, but two surgeries before my fortieth, I’m not bothered in the slightest.  That’s because of the work on the shunt project I’ve done this year.  I’m so grateful to have access to excellent treatment (free treatment too!) and I have the knowledge that if my shunt has kicked the bucket, I’ll get a brand new one instantly, that it makes any inconvenience aspect pale into insignificance.  If anything it’s strengthened my resolve to get back on track with the project as soon as I am well again.
Codman UK contacted me yesterday to say that they hadn’t given up or forgotten but they were now being challenged about the ethics of donating expired equipment to be sent overseas.  Tim Coyne, the guy I am dealing with at Codman, feels the same frustration that I do but is determined to see it through.  That’s why I feel relaxed about it now; we’re on the same page so it will get done, I know it.  But when I get better there is a bigger issue to address; the restricting rules and guidelines which are preventing equipment to be donated and which are effectively contributing to the high death rates overseas need to be looked at and (hopefully) relaxed so donation is a viable option for hospitals, not something staff could get fired for if they participate.  But I’ll worry about that when I’m better.  For now, I have a date and I have some hope of finding out just exactly what my shunt thinks it’s been playing at all these weeks!  That’ll do me for now.

Watch Out, Shunt Manufacturers. I Am Back. In A Nice Way.

September 4, 2013

Today is Action Day.  Not physical action because I woke up with my head feeling overdrained even before I’d sat upright (hurry back from leave SOON, please Mr Watkins and Simon!).  No, it’s a day for Shunt Project Action.  I’ve not been able to do anything on this for about a month now due to my own shunt playing up and I’ve been rather astonished at how apparent it’s become that if I don’t do anything about this, nothing is going to happen.  I sent reminder emails a month ago to the two main shunt manufacturers who have both been helping me on this; Codman UK (who offered the forty Bactiseal shunts for Kenya) and Medtronic (who I met with at Great Ormond Street and who got very excited about what I was doing, offering support, public profiles, access to their overseas distributors surplus shunt stocks – all in all a very positive response).   I’ve heard nothing back from either of them since.  I know that what I’m asking of companies is going to add to their workloads, plus I’m not paying them, plus it’s urgent – but it is ultimately their choice as to whether they get involved or not.  It’s always been important to me to only work on this with people who feel as strongly about it as I do because there is no money involved; it’s a charitable venture I’m setting up so parties involved have to be driven by passion and determination and not financial reward.    Both these companies volunteered more than enthusiastically to be involved and have been kind and generous with their offers.  But now I send an enquiry for an update and any issues and I get a tumbleweed back.  With Codman I thought we were nearly there; they’d needed a hand-written letter from the charity in Kenya I’m sending the shunts to (BethanyKids), so they got on with that, airmailed the letter to me and I couriered it to Codman offices in Leeds where it was signed for.  I was told it just needed to go through a charity review and then the shunts would be ready for collection.  This was in July and it’s now September and not only do I not know what stage this ‘review’ has got to, I’m no longer even getting a reply to my enquiry.  I feel I shouldn’t be frustrated; they’re probably just busy, they’ll probably get back to me…but I do feel frustrated.  I have a surgeon in Kenya patiently waiting on these shunts and children needing them right NOW and I don’t know what to tell him because now I’m not sure if Codman have just dropped the ball and it’s not going to happen.  If a problem’s arisen their end, then fine but I need to know what’s going on.  Same with Medtronic.  The last I heard was that they were ‘in talks with Head Office’; sounds good.  But no word since I emailed them a ‘so where are we at?’ email a month ago.  I wish I was well enough to go in person to their offices and have a meeting with them; meetings face-to-face are so much more productive and gain momentum.  My confidence in approaching surgeons and manufacturers is fine.  Chasing them up, however, can literally bring me out in a sweat.  I hate it.   I have a lovely friend, Steve, who is Project Manager for the government (transport department – he is hardly a fan of the Coalition but sees his role as being the one to ‘talk some sense into them’) and he’s offered to help me whilst I’m poorly.  Hurrah for Steve.  He has contacts galore within the government (I told you I still intended to get hold of Jeremy Hunt regarding the ridiculous NHS ‘oh-it’s-a-week-out-of-date-so-let’s-just-bin-it’ rules regarding expired medical equipment in this country) and Steve said that chasing up non-fulfilled promises made by major companies is the mainstay of his job.  So I am confident that after a couple of meetings with him, Codman and Medtronic will be back on the ball and I’ll have acquired new skills in ensuring that communications are consistent and productive.  There are children waiting to be shunted and I am not waiting anymore.  I can’t wait to get better because that will be weeks, if not months.  I need to get back on this right now.  With a little help from Steve.  Hurrah for Steve.  Hurrah, hurrah.

I’m Forty Next Month. I Have A Par-day To Plan. Help.

September 1, 2013

Er, excuse me, where did the year just go??  I am forty next month and I have not completed my F-List.  This is not on.  To make things worse, my shunt has decided to malfunction.  Great timing, as always, Shunt!  I had planned to go to Paris in September (it’s on my F-List) but now I can’t leave the house, let alone leave the country. 

This is where I wanted to be on my fortieth.  I love it here.

This is where I wanted to be on my fortieth. I love it here.

Maybe I’ll just have to be creative regarding that one. I have decided to start organising my fortieth birthday plans now.  Because October is galloping up behind me at alarming speed and my gut is telling me that I am almost certainly heading for head surgery of some sort.  So best to crack on with it now rather than wait and find myself in hospital, rather poorly and with no energy to organise a wash, let alone a party.  I am now trying to decide what to do to celebrate what has turned out (rather surprisingly) to be an important birthday to me.  Here’s why it’s important:

  • I’m grateful to be able to celebrate a fortieth birthday.  Not that every time my shunt fails I think I’m going to die – I don’t.  But in the last thirteen years I’ve had nineteen troublesome brain and stomach surgeries, two shunt infections, a blockage, collapsed ventricles in the brain, my brain fluid leaking down my neck (it really shouldn’t be on one’s neck) and a couple of genuine moments where I did, momentarily, find myself thinking; ‘hmm, this feels dangerous.  I wonder where this is going to end up?’.  Having genuine uncertainty, even if it’s fleeting, as to whether you’re still going to be alive in a couple of days is rather odd.  Also, probably more obviously, the work I’ve done on my shunt donation project has taught me that I am actually very, very, very lucky indeed.  Life should be celebrated.
  •  I want to throw a nice party to thank my family and friends for helping over the years.  I know what they’d say to that; ‘that’s what we’re here for!’.  Well, yes it kind of is.  But that doesn’t mean I take it for granted.  The only way I can stay positive when I’m very ill is because of them.
  • Last year’s birthday was a washout.  I was so ill, I couldn’t even stay to my own party.  I ended up in bed by 8.30pm.
  • Although people may not see it this way, I’ve had a cracking first 39 years.  I had a wonderful childhood, a pretty normal teenage existence (stroppy, spotty, thought I knew everything but still secretly loved hanging out with my family even though it was criminal to admit that), some very blessed years in my twenties working at Nick’s Music Studios which was the best job I ever could have asked for, and even though the years since then have been challenging, I’ve learnt a lot.  I wouldn’t change a thing so far.  Even the hydrocephalus bit.  I have often said that if I were given the choice of going back to my life at 26, when I was diagnosed, and having the option of either NOT having hydrocephalus but staying in my life as it was at that time, with that boyfriend (we were about to sign a mortgage and probably would have got married), that job (before I worked at Nick’s Studios) and that perfectly-fine-but-unremarkable existence OR having hydrocephalus and ending up where I am now (single, only able to work part-time, feeling physically rubbish much of the time), I would without hesitation choose the latter.  I prefer who I am now.  I’m genuinely happy.  Hydrocephalus and all.

So I feel I have lovely things to celebrate and lovely people to celebrate them with.  But what to do?  It’s hard to plan a big party when you’re feeling so ill you can’t function after 2pm and your memory is like a colander.  I have no idea of what is going to happen be done regarding my head; I know they want to do ICP monitoring but what comes after that is anyone’s guess.  I have pushed my party back to 10th November at the moment..I am hoping that if I do have to have a sizeable surgery, this will allow me to recover enough to attend my party!  Here are the options I am considering:

  • Hiring a boat on the River Thames and having a floating party, with live music from my friends-in-various-bands.  It would be a four-hour cruise past all the major sights and back again.  It would also be pretty expensive.  But fun.
  • Hiring a venue down here (by ‘here’ I mean Brighton as that’s the nearest large city to me and has the most options) with – again – live music and good food.  It’s cheaper and it’s easier to accomplish if by any chance I am ill on the day.  I could still go for a few hours whereas getting to London from here and then partying and then getting back when your head pressure is off is not really that enjoyable.
  • A cocktail party at mine; it’s big enough and I have a 1950s cocktail bar that I bought on Ebay when I moved out here.  The downside of this is that I cannot leave if I feel unwell and it’s a lot of organisation/preparation/clearing up, which isn’t easy when you’re ill.

I had wanted to spend my fortieth in Paris but that is now impossible.  I wondered about having a Paris-themed party instead, with French food, French music and French decor.  I need some suggestions if anyone has any.  Please feel free to list them below!  My aching head would be grateful for them.  xx