My Charity Archives – Jordantheheadcase

Our Charity Starts At Home…But It Doesn’t End There

May 9, 2017

After a few years of snatching spare bits of time to get what started as the ‘shunt donation project’ off the ground, I feel that it’s finally getting to where I wanted it to be.

The idea started back in 2011 when I was badly overdraining and waiting for a bed at the National Hospital; I felt so terrible that I was online searching for…what? Something. Some hint that I wasn’t the only one going through this, I suppose. I used to do that rather a lot when I felt physically awful and emotionally drained from feeling permanently ill and preparing to go through yet ANOTHER brain surgery. It never really helped; all I’d uncover were horror stories of brain-surgeries-gone-wrong. (If you find yourself in the same position at any time, may I suggest going to Shine if you’re in the UK or the Hydrocephalus Association if you’re outside of the UK?). Both offer excellent advice, reassurance and have community links where you can chat to other people in the same boat as you….AVOID THE HORROR STORIES AT ALL COSTS.

Anyway, (a quick recap for new readers), I stumbled across a film from Vietnam highlighting the plight of children and babies with untreated hydrocephalus and mentioning that shunts were sometimes donated from hospitals to help with the treatment. To cut a very long story short, I started to gather what information I could on the situation and started asking hospitals if they had any spare shunts. This took a good year as I wasn’t actually well enough to do much at all (I was having brain surgery on average once every 6 months at this time…this went on from 2000 to 2013). When I finally had some breathing space in 2014 I teamed up with a consultant neurosurgeon at the National Hospital in London (Lewis Thorne) and we co-founded Action For Hydrocephalus, which was finally registered as a charity at the end of 2016.

Goal achieved; one of the children after a successful shunt surgery using our donated items (Ethiopia, April 2017).

We are now three, as we were joined by another neurosurgeon from Great Ormond Street Children’s Hospital (Greg James). So far we have sent donated shunts and neurosurgical equipment to Uganda, Kenya, Vietnam and Ethiopia.

In 2016 we teamed up with Reach Another Foundation, who work in Ethiopia. We’d donated shunts to them before but Dick Koning (Founder) thought there were more possibilities by working together. We’ve met a few times and are now partners. Dick and his team regularly operate on babies and children with hydrocephalus and spina bifida as well as training neurosurgeons. We are in discussions with regard to a possible training exchange with the UK (so we’d fly surgeons out there to train Ethiopian students as well as having them over to the UK to observe shunt surgeries here). We also help equip their expeditions to Ethiopia as there are no neurosurgical instruments available out there; without equipment and shunts no surgeries are actually going to be possible.
Running a charity from your living room (the meetings are held in London but all the other work is done at my house) can be a messy business. More often than not my little home has shunt kits, boxes of neurosurgical items and a lot of paperwork lying around .

Shunt kits can be rather big. Cats can be rather nosy.

Keeping my inquisitive cat out of the boxes and packaging is one task. Not tripping over them is another.
One downside of my hydrocephalus is that I’m so pressure-sensitive I can’t fly on planes any more. So I can’t actually get over to Ethiopia myself (yes I know I could go overland but it would also render me bankrupt). So getting photos and feedback from the team who’ve received and used the donations is nothing short of wonderful; to see the children after their surgeries, knowing that a shunt is now safely inside each of their heads and that now the hideous feelings of high pressure will start to be reduced, literally lifts a weight off my shoulders. I know first-hand how high pressure in the brain feels. To have it without the knowledge that it will soon be treated is unthinkable to me. Being ill in hospital isn’t nice but it could be so much worse; I always count myself very lucky to have been born in the UK with access to hospitals, surgeons and healthcare – none of which I have to pay for directly. Very. Lucky. The most recent expedition to Ethiopia was just last month in April. Dick had emailed me a few weeks prior with a list of equipment which was urgently needed and asked if I could help. This is when holding down two jobs and trying to get charity work done becomes a little tight. Luckily this time, as before, I had two very understanding donors who acted immediately.

One donation, two donation, three donation, four!

The companies who donate the actual items we send out are absolutely crucial. Without them, the money would have to be raised to buy the equipment which would slow things down to the point of being dangerous for the children who need urgent surgeries and would also at times make some surgeries impossible if the money can’t be raised.

One of the tiny patients: April 2017 expedition

I have been very lucky with the donors I have worked with; all of them who have given their equipment in abundance and completely free of charge (including shipping; I always say I’ll pay for that and they never let me) do so with goodwill and a real desire to help. In the past we have had donations from:

Sophysa
Codman
Medtronic
Single Use Surgical
And various hospitals!

This time around we were lucky enough to add a new and very generous donor to our growing list. We were already being helped on this occasion by Single Use Surgical (who had helped equip the trip made in 2016), but also had Surgical Holdings on board for this trip. Surgical Holdings are a family-run company located in Essex and quickly sent a whole load of equipment from our list.

Dr Esayas receiving some of the donations from Surgical Holdings & Single Use Surgical in Gondar (April 2017)

Approaching a new donor is always a little nerve-wracking for me. After all, I’m literally asking a company if I can have some of their products for free…I know it’s for a charity but I still get a little knot in my stomach when I ask. And I really shouldn’t because I have never received a negative or rude response. If the company are unable to help they’re always profusely apologetic and if they can help, they are so enthusiastic and supportive it makes me feel ashamed of being worried about it. Because generally, people do want to help, especially when they know more about what we’re doing.

This time I was in touch with Daniel Coole, Managing Director, who replied quickly to my email with ‘absolutely; if we have these items we’ll help. How many?’. It was as simple as that. What a kind man. Soon after, a large box arrived at my house with everything the team in Ethiopia needed. Unfortunately, actually getting the goods to Ethiopia can be a little tricky; we’re not dealing with Royal Mail and British customs here!

Inspecting the items with smiles.

Paperwork requirements keep changing, items get confiscated at customs for various reasons and never returned…it’s a bit of a gamble. And also sometimes takes a bit of to-ing and fro-ing with the donors to ensure we have the right paperwork etc (which keeps changing). It’s not the fault of the donors and can be a bit time-consuming for them which frustrates me no end; I want it to be as seamless as possible for them. However now Dick has established a new system with customs and Ethiopian Airlines so we’re hopeful that from now on the whole donation procedure will be nearly effortless for the donors.
So generally, I track down, beg for and receive the items at my home, take them personally to a volunteer flying out to join the Reach Another Team in Ethiopia and she carries them with her hand luggage. Given the vast amount I received this time around from two donors (Surgical Holdings as already mentioned and also Single Use Surgical who have donated before), I felt a bit guilty about handing them over to her; talk about heavy!!

Another of the babies ready for surgery.

I wouldn’t fancy lugging that load to Ethiopia on top of all my normal luggage. I do seem to spend rather a lot of time feeling a bit guilty doing this work; guilty for asking for free stuff, guilty for passing it on…I really must get over that! Ciara (the lovely volunteer) didn’t bat an eyelid. She was too busy being excited about the donations. And so she should have been…it was generosity on a huge scale.
Yesterday I received the first photos from the team in Ethiopia which I have shared with you here. They show one of the surgeons unpacking the items and also some of the little patients who they were used on. As we had so much equipment, the donations were sent to three different centres which was amazing; without them, these surgeries couldn’t have been performed and the babies couldn’t have been saved. So thank you Daniel Coole and everyone at Surgical Holdings, Single Use Surgical and all the other donors who have helped us in the past (and who can hopefully help us in the future). Because without you, there would be a whole lot more suffering going on.

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A Rather Overdue Update

June 16, 2016

Where does the time go? Seriously, that is a genuine question. Anyone who has an answer, please let me know. I’ve had quite few emails from readers asking when my next post was going to be so I thought I’d better get to it. I apologise for the long absence (I think it’a been about a YEAR) and thank you all for your frequent comments and questions about the blog; I’m glad it is helping so many of you understand what it’s like to live with hydrocephalus and what to expect when facing surgeries/ICP monitoring and so on. I am absolutely going to try and write here more frequently now things have calmed down a little. Rather a lot has happened in the last few months, most of it good! At the moment I’m pretty under the weather with a horrible virus (not good) which seems to be lasting an eternity (not good) and I can’t remember the last time I felt this rough, which means my immune system must actually usually be quite effective at fending off such viruses (good).
So…update on the charity side of things! Well I’m still waiting to get my charity registration number – this process seems to take quite a long time but I believe I’m nearly there. The website is pretty much finished and ready to go; I may put a link to it at the end of this post if I’m feeling brave enough. Please bear in mind when you have a look at it that it was designed by ME. I am not, by any stretch of the imagination, a web designer. So yes, it’s basic but I hope it gets the message across about what we do. By the way, I need a good logo – I’m not even going to START trying to design that – so if anyone has had experience of getting logos designed rather cheaply (I’m paying for it so there’s a budget!) please send any suggestions this way and they’ll be very welcome!
In March this year, Reach Another Foundation flew over to the UK so we could all meet up again. Reach Another Foundation are a charity Lewis and I donated some shunts to a couple of years ago, headed by Marinus Koning; I wrote about this in an earlier blog post. Just to confuse you, although Marinus is his name, everyone who knows him well calls him ‘Dick’ and he said I could call him this. So when I talk about Dick I actually mean Marinus. Same dude. Reach Another Foundation work in Ethiopia and have done amazing work out there. I mean, seriously impressive. They work to improve access to medical treatment for hydrocephalus and spina bifida and have also opened Ethiopia’s first school dedicated to the education of autistic children. As if this wasn’t enough, they are also training neurosurgeons out there; in 2009 there was only one neurosurgeon to treat Ethiopia’s population of over eighty million. Thanks to Dick, his team and the programs they have set in place, they are on target to have twenty-five neurosurgeons by 2020.
So where do we fit in? Well, the first fantastic news is that Lewis and I have been joined by a third trustee; Greg James, consultant paediatric neurosurgeon at Great Ormond Street Children’s Hospital.

Greg James; consultant neurosurgeon and our newest trustee

This has been a great development for us because not only is Greg an amazing surgeon and a very nice guy to boot, but he and Lewis are going to fly out to Ethiopia with Reach Another Foundation to (fingers crossed) start up a training exchange. The plan (still being discussed) is to fly the trainee neurosurgeons over here to observe Lewis and Greg in theatre and learn as much about our techniques as possible (they are not permitted to actually carry out surgery here due to frankly ridiculous amounts of rules and red tape – nice one, UK). Then Lewis and Greg will fly out to Ethiopia with them later and oversee them performing (or assisting with) said techniques on the patients over there. And of course whilst they are there they will be doing a whole myriad of other things; Greg is taking over hygiene protocols recently set up in Great Ormond Street (which amazingly reduced the infection rate by a THIRD) to set up in Ethiopia – just imagine the impact it’s going to have in a place where infection is rife. And me, what do I get to do whilst the boys are out in the field, working hard? Alas, I cannot go with them as I can’t fly (head pressure issues) so I’ll have to stay at home like a good little 1950s housewife and keep things in order! I know my place. Just kidding. I have a lot to be getting on with; we have now established the shunt donation scheme and put it to the test in April with the mother of all deadlines. Whilst Reach Another Foundation were here in February (I got to meet the whole team – around ten in all which was lovely) they told us about their next trip out in May when they would need all manner of surgical equipment as they were going out to perform some overdue operations on children with spina bifida and hydrocephalus. In Ethiopia as you can imagine, they have literally nothing. I asked them to send me the list of equipment once it was finalised and I would see what I could do about getting as many items as I could for them. Well, cue three months of frantic running about. First I asked hospitals, clinics and neurosurgical centres; none of them could help (although they very much wanted to). And we can literally thank our current government for that. The cuts they have been making to the NHS means that hospitals are clinging on tooth and nail to every last bit of equipment; any items not used have to be sent straight back to the manufacturer and cannot be donated. What a change to a few years ago when I first applied for shunts. I got a ‘yes’ from the first hospital I asked. Whilst this is all very understandable from the hospitals’ perspective, for me it was a logistical headache. Just where could I get these items from? The list was long, the items were multiple and expensive and, not being a surgeon, I didn’t know what any of them were. Oh, the irony; I’ve come into direct contact with these very instruments time and time and time again, but because I’ve been flat out asleep, I’ve never seen one of them (thank God from the look of some of them to be honest). In the end, in April and just as I was about to give up (I HATE giving up), I had an appointment with Simon, my hydrocephalus advisor at Queen Square, who I’ve spent so much time with over the years that he feels like a friend and not a healthcare professional. He knows about my project and always takes a very keen interest in it. I told him of the struggle I was having (I had obviously already asked him if Queen Square could spare anything) and he suggested going straight to the manufacturers. This may seem a blatantly obvious course of action to many of you reading and I had considered this way back at the beginning, but dismissed it because to my way of thinking they would be making a direct loss by donating items that they could otherwise sell at full cost. However, Simon said (a great game) to bear in mind that even though these are businesses making products to make profit at the end of the day, they are doing so within a sector where an awful lot of goodwill exists. I had seen this first-hand with the companies who have donated shunts to us before but this list was so extensive (and expensive) that I hadn’t held out much hope from going down that path again. But Simon urged me to try. The dude is right about pretty much everything most of the time so who was I to argue? So I sent out a fleet of what can only be described as begging letters to all the manufacturers of the products I was after. And back came yes after yes after yes! In the end I had over half the list of items; some of them were simply not in stock (but are on their way to me now for Reach Another Foundation to take with them on their next trip out) and a couple of the items I found out later cost £20,000 a piece! Oops! There I was asking if they could spare eight, or ideally sixteen! I forget sometimes how much of a learning curve this all still is. Note to self: next time find out how much the items are BEFORE you start asking.
However, we had a good result and especially from Sophysa (who have donated shunts to us before and happily handed over ten full kits, instruction manuals and shunt passers) and Single Use Surgical, who donated pretty much everything else.

Just look at all those lovely donations – thousands of pounds-worth! L-R, Ciara Baxter (volunteer for Reach Another), Lewis et moi.

So in May I went to London to meet Ciara, a volunteer for Reach Another Foundation who I had met a couple of years earlier when we sent the first donated batch of shunts out to Ethiopia with her. I met her in London, took all the equipment up with me and we met with Lewis in his office to do the official hand-over and to take some photos as well, to thank the companies who had donated. Greg unfortunately couldn’t make it (trying to get all of our schedules to coincide is usually impossible) but we got some good photos done. I felt a bit bad that we’d had to leave Greg off the photo and Lewis suggested Photoshopping him in. No doubt as a joke but I immediately saw a fun challenge there (I have no idea how to use Photoshop) and tried to stick him into our photo.

As if by magic, Greg appeared.

Which kind of worked, only I’m slightly turned away from him and he’s off to the side a bit so it looks like the three of us are trying to edge him out of the group! So that photo will not be sent to anyone because edge him out we will never do. And so off to Ethiopia the donated items went! Dick contacted me to say that the donations (needless to say) had been a hit and the surgeon receiving them had been moved to tears. Incidentally, the surgeon is Dr Yordanos who is Ethiopia’s first and only female neurosurgeon. They are starting up a hydrocephalus program over there so Dick is going to let me know about it as soon as we can Skype and hopefully we’ll be able to help with that in some way. The donation programme is ongoing and is not limited to shunts only; all neurosurgical equipment and also general surgical items are being received. I’ve just had notification of a lot of surgical masks which I’m following up and we now have some Penfield dissectors (neurosurgical stuff) on their way. Currently I am getting a database of participating hospitals/clinics and manufacturers together to make all this run a bit more smoothly. And looking into storage space too!!

The other thing I’ve been working on regarding the charity is our shunt symptoms/diagnosis tools to send out to new parents and parents-to-be in more rural areas. I have now legally acquired design rights so I can safely reveal it; we have opted to use line drawings rather than photos shown but this gives an idea of how the design works. The symptoms show ‘good’ symptoms on one side and ‘bad’ hydrocephalus symptoms on the other. We have not used words as literacy levels in developing areas vary greatly so thought it best to use visuals only; then we can send it out to any area and be sure that the recipients will be able to use it properly. On the reverse-side of the card will be photos showing parents how to use the attached, specially-modified tape measure (which Lewis and Greg are in charge of) and then images showing to seek help if the tape measure reveals a too-large head circumference. We may need to include a chart on the reverse-side of the card too but will finalise this later. The tape measures will be attached to each card in a way which means removal is near impossible, so they cannot get lost. The symptoms card itself can also be blown up to poster-size so it can also be displayed in waiting rooms in hospitals and health clinics. I am hoping to get the tape measure design finished by the end of the year and then after we’ve tested it extensively at Great Ormond Street, we’ll be ready to go into production. We have a charity in Vietnam (Helping Orphans Worldwide) who have said they’ll happily do the first distribution for us and who also have offered to help with the printing and production side of things. Just how we’re going to get these out to the rural areas (where late presentation is one of the main causes of terminal hydrocephalus) I haven’t worked out yet but we’ll cross that bridge when we come to it. Fundraising galore I think is going to be the answer! Hydrocephalus is going to happen but if we can educate parents in what to look for, to assess their own child and act quickly if their child is displaying worrying symptoms, this could really help to get children treated rather than it being too late and leading to a terminal diagnosis.

So that’s what we’ve been up to recently. I have to shoo off for now but will update with more hydrocephalus-related info soon. I’ve received ever such a lot of emails from you all with more questions about all manner of things so I think I’ll compile those into a new Q & A post. Which I promise to do SOON. Not in a year.

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Okay…total U-turn….

May 19, 2014

Erm….so you know how I said in my last post that Vietnam work was going to have to be shelved for a bit due to the key contacts I was working with disappearing? Yes, well, forget all that. I had a final push at trying to get the Vietnam door open and….ta-daaaaah! Doors flinging open all over the place. But most importantly, these doors were being opened by the right people. So in the past couple of weeks I’ve possibly made more progress than I had done in the last six months.
Looking back, it almost makes me laugh. Because really, the key to achieving your goals is so simple. You need passion about what you are doing. You need to be doing it for the right reasons. You need to be able to dream big. And the people you decide to work with on the way need to be just as passionate, just as motivated for the right reasons and must be dreaming just as big. As the new neurosurgeon I was put in touch with (Martin Corbally) who opened a whacking majorly big door said to me regarding my project, ‘Jordan, doors are just waiting to open’. And now they have, it feels great. I won’t go into all of it because there’s shedloads of work ahead but I will say that it feels very positive, very exciting and very possible. But I will mention Hillary Browne of Helping Orphans Worldwide…the biggest heart I’ve encountered in a long time and a big door-opener as well. She does amazing work with her foundation (check out the link before) and is soon to be moving to Vietnam permanently so it’ll be fantastic to have so involved a contact actually out there, seeing as I can’t get on a plane due to my flipping noggin’. So all good and now all moving forwards once again! Stay tooned for news on this one.
I also had a very productive and lovely meeting with a major hospital in a major city, who are being majorly helpful. I very frustratingly can’t name them because they, like many who want to help in the donation of expired-but-absolutely-perfect medical equipment, are bound by internal rules which prohibit them donating; as a result, it’s all sent to landfill or for scrap metal. MADDENING! So they’re doing it very secretly. I panic slightly about this on a weekly basis but their determination to join this cause overrides their fear of a possible firing and they’ve said they are more than happy to risk it. Such determination of spirit is what fuels my belief that this will work. Indeed, they’ve donated lots already to me (I sent out a goodie-bag of neurosurgical bits to Ethiopia last month from them) and now they’ve come up with major full kits for neurosurgery and shunt insertion which are literally like gold-dust. They’ll be ready for me in July. Very ‘cited about that!
So many people have been offering donations for this recently…it’s so kind. They range from money to fax machines to offers of help carrying all the heavier stuff to London so I can pass them onto the volunteers taking the equipment out to whatever country it is (that offer is probably the one that got the most effusive thanks!). I’m in the process of setting up a charitable foundation with a website in production so that if folk do want to get involved in any way, it’ll make it a lot easier for them to do so. So far I’ve not accepted money from anyone as I didn’t want anybody but myself to be out of pocket in any way. But now the project is getting bigger and spreading its wings, I can see that if I carry on this way, I’ll end up bankrupt! Posting heavy equipment across the world is not cheap, nor are the UK rail fares to go and pick it up (I’m not able to drive for two years following excessive burr-holes-in-da-head). The hardest thing is choosing a name for the charity. What the bejeezus am I going to call it? It could be something safe and descriptive but I personally want it to be catchy, something which will get attention. Not just another ‘Society For…’ or ‘Association For…’ because the charity world is saturated with those (no offence to Societies and Associations; it’s just that I don’t want us to get lost). So late-night brainstorming sessions looking for a name are the current order of my day.

My, what a helpful post that was! I have great news on the development of the project but I can’t tell you what it is, I’ve received some amazing donations but I can’t tell you who they’re from and I’m soon to be a charitable organisation but I can’t tell you what it will be called. Aren’t you glad you read this?

Before I go, here’s a picture of true happiness….apparently all that’s needed to achieve this state is a warm lap, some sunshine and someone tickling the top of your head. Who knew?

This is da life.

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New Season, New Directions…

April 7, 2014

Hello everyone! I’m so sorry for the mahoosive delay between my last post and now. I’ve been busy with work, sorting out shunts to send overseas and had not one but two laptop disasters;

Caught in the act.

first one caused by my cat secretly sleeping on the keyboard when I was out of the room and clogging up the fan with fur and the second caused by a mug of tea with a broken handle. You can guess the rest. But never mind, for ’tis Spring! Hurrah! I love Spring. Spring means flowers and bunny rabbits and seven very sweet little lambs appearing in the field next to your house, bouncing (and bleating) incessantly in the cutest manner imaginable. Any jokes about mint sauce at this point shall NOT be appreciated.

Thankyou for all your lovely comments during my absence.

One of my new little neighbours. Awwwww!

It’s great to know what people think about this blog; it’s not so great to hear of the difficult episodes some of you are dealing with regarding your own experiences with hydrocephalus but I do think it’s a comfort at such times to know you’re not alone. My own head is still being treated as an outpatient (outhead?) at the National Hospital with pressure adjustments being done every couple of months. We’re still not there yet following my glitch last year. My lovely registrar, Akbah, did say that it would take around six months to a year to get me well again and it looks as though (again) he is going to be correct. I’ve gone down three settings since I left hospital and I’m experimenting with things which might affect the pressure, such as my bed (usually raised on bricks at the head-end as I can’t bear to lie flat so am trying one brick, then two bricks, then no bricks), excercise, work hours and so on. I feel much, much better than when I left hospital so I know we’re going the right way. Is the fact I STILL feel ill frustrating? Yes. Does feeling down about that help matters? No. Onwards and upwards, then!

Changes And Developments With The Shunts!

I haven’t updated on the Shunt Donation Project as for a few months it’s been nothing but researching World Health Organisation guidelines, NHS guidelines, donation procedures, yadda, yadda, yadda….not exactly scintillating stuff. I needed to get some guidelines in place for both donors and recipients of shunts, to ensure that everyone would be singing from the same hymn sheet and that we would be doing things correctly. Anyhow, I had three lovely donations recently; the first from Lewis who sent me an email saying; ‘I have nine in-date shunts sitting here in my office for you’. Whoop-de-do! I collected them and allocated them to a new organisation I’ve recently started to liaise with, called the Reach Another Foundation. This is a non-profit organisation who work on various projects in developing countries to improve healthcare, education and living conditions.

Marinus Koning, Medical Director of Reach Another Foundation

Marinus Koning, the founder of the company and the Medical Director, was horrified when he first went to Ethiopia to discover that there were only two neurosurgeons for the eighty million people who live there. Through a neurosurgery training programme, that number is slowly rising; I believe there are five or six now….but still! As is often the case in developing countries, babies born with hydrocephalus are not deemed to be emergency cases and are pushed right to the back of any neurosurgical list. So of course, by the time they are finally dealt with, many have died and for the vast majority, treatment is not possible. Marinus had indicated on his website that a severe shortage of shunts was also a primary factor, which is why I offered him the nine which Lewis had got for us. He jumped at the chance and so I was able to put the first proper procedures in place, using our guidelines, signed statements and reports to ensure that no fraud can take place and that the shunts cannot be sold on for profit (given that they are worth hundreds of pounds, sometimes thousands). I had no concerns of Marinus selling them on the black market but it’s good to ward against such possibilities. So on Saturday just gone, I travelled to London with my Mum (girly day out) to meet up with Ciara Baxter, a volunteer for Reach Another Foundation who is flying out to Ethiopia in two weeks. It was really good to meet her; after all the endless faceless emails between myself, donors and recipients, it is a refreshing change to meet someone in the flesh! She was lovely and we had a good chat about the situation in Ethiopia and how we might be able to continue to help the situation. So I passed the shunts over and now they are on their way to Ethiopia and some waiting children. Marinus is very interested in joining forces with us to see what we can do together to improve things there so I am meeting with Lewis next week and then ‘Skyping’ with Marinus after that to get to hopefully get some plans in place. I shall keep you posted!

The second lovely donation I received was from Sophysa, the largest European shunt manufacturer.

Fantabulous shunts from Sophysa

I have been in touch with them for some time and have my very own ‘Ambassador’ there called Mohamed! He is a lovely man, very willing to help in whatever way he can. He was meant to send some shunts last year but then I not-very-helpfully fell ill so he sent them to me last month; a big shiny box of new, in-date shunts! These I have allocated to BethanyKids in Kenya as they were due to get some Codman donations last year but that unfortunately fell through. It’s very interesting doing these donations in terms of encountering enough hurdles to warrant an Olympic event. Although we are doing nothing illegal, red tape and high levels of potential fraud mean that we have to be a) very imaginative and b) rather cloak-and-dagger about the whole thing. Disguising valuable shunts as other invaluable items is now something that comes naturally to me. No wonder these poor people are having a hard time getting the treatment they need; not only are the governments not investing in their care, even donations from charities are often not even reaching them.

The final donation I had was from Adam Zeller, yet another lovely man who put me in touch with Mohamed. Adam works for a company called Fannin and they sent us some fantastic valves. No catheters but getting hold of catheters is not actually that difficult, so we should be able to send them out as full shunt kits. I don’t yet know where these will go. I have stated in the guidelines for donors which Lewis and I send out that all costs for postage are covered by myself. All three of these donors have refused to let me pay and Sophysa asked that the cost be instead donated to BethanyKids rather than go back to them.
All these donations from people who, frankly, have very full inboxes and busy lives, make me realise that it is actually rather simple to do this; you just have to be passionate enough about it. The donations which have fallen through have always had an air of ‘yes, sounds like a great idea but really busy at the moment’ with promises of donations and then nothing coming of them. The donations which have come through have just flowed, no problems, no barriers and no ‘gentle reminders’ needed from me! All the donors and the recipients have a real drive to get this done but with no fanfare or drama. They just get on with it and to heck with the extra workload. That’s why it works.
Now if only we could have the same success with the governments!! The Vietnam proposal looks as though it’s going to have to be abandoned for now; it has nothing to do with a change of heart or lack of determination. Lack of key contacts is the main cause, plus the fact that getting any information out of Vietnam is like getting blood out of a stone; it’s been exhausting and very frustrating and I’ve been working hard to try and make this happen but with limited contacts and no means of getting out there myself (I can’t fly due to pressure issues in my head), it seems more worthwhile to try this proposal with another country first, where I have more people helping me and therefore far more contacts! Whilst I’ve got Marinus so enthusiastic to make permanent change, I think the most appropriate thing to do is run with Ethiopia and see if a proposal to the Ethiopian Health Ministry could be a good idea. If that works, I can try again with Vietnam and maybe already having a successful pitch under my belt will help persuade Vietnam that if Ethiopia can do it, so can they. Ethiopia is a poor country so doesn’t necessarily have the money to fling at treating children with a fatal condition, whereas the Vietnam economy is very strong; it’s more a case of a lazy government by the look of things there! Anyway. Chats with Lewis and Marinus this week, hurrah! Action. Planning ahead. Working with people who want to help you bring about proper, long-term change. It feels great.
Oh by the way, I am looking into setting up a charity to raise money for this project; at the moment it’s not costing me too much money but I’m hoping that a proper established charity will help propel thing forwards. Name suggestions are very welcome!

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I am not a patient patient.

January 21, 2014

At last! At long flipping last! I actually feel a little better in the head department. When I left hospital in October last year following my month with a bolt in my head, I didn’t feel much better than when I went in and certainly not as improved as I usually do following surgeries. It has been a challenge sometimes to believe that I would get better but sometimes you have to believe in the positive. Even if you have to force yourself to. Anyway, yesterday I managed to go for a run…the first run in six months. Oh, how I’ve missed it. It hurts my head when I run; the pressure can go a bit mad and my face tends to turn a worrying shade of purple, like a grape. It’s not attractive. But afterwards I always feel fantastic; I sleep better, my headaches are generally easier and I can eat cake without having to worry too much about it as my metabolism is so much faster. My surgeons know I run daily most of the time and have never told me to stop. So yesterday I felt very jubilant because before that there was no WAY I could have run; I was having difficulty even standing up from a sitting position. I had a pressure reduction in my shunt six days ago and I can feel the improvement slowly but steadily going on. Until this week, my bed was raised on two bricks at the head-end (I couldn’t tolerate lying flat) and every time I’d go to stand up the pressure would go too high for me to tolerate. So I told Saint Simon, who ordered me to come up the next day and he changed it for me. And now my bed is only on one brick and I can stand up a lot more easily. I think I’ll need one more pressure reduction in the next couple of months and hopefully that will be it. But oh, the relief of starting to feel better after almost a year of feeling constantly exhausted, headachey, pressured and sick. I’ve even taken on an extra work shift. Get me.
And now it’s shunt project time! Kim Nguyen Browne from Go Vap Orphanage has a much-needed brain scan for me of one of the orphans there who was born with half a brain and who was successfully shunted. Usually the children born with these sorts of complications are left with no treatment at all. Kim has unfortunately been very ill so instead of being in Vietnam right now as originally planned, getting the much-needed figures from the government, she’s staying here to recover. Poor thing; she’s missed the children she usually sees over there so much but her health comes first. Health always comes first! Given the change of circumstances Kim has asked if I can deal with the government in Vietnam. Me. Little old me. Oh, God. I’m meeting with her soon to collect the scan and to get a crash course in liaising with the Vietnamese government. She thinks my dealing with them will speed things along as she’s still too ill to do all this – which makes sense. But I feel the same way now that I did when I initially started this project; that I’m way out of my depth and have no idea of what I’m actually doing! Of course she’ll help me and will be there for support. And obviously I have Lewis on board now too so I’m not doing this alone. But it still scares the crap out of me. I can barely understand the motivations behind our own coalition government most of the time but at least they have a healthcare system which actually treats sick and disabled children (as long as they don’t dismantle it in the next few years). Trying to bring about change in a health ministry which has run the same way for years and doesn’t seem to have the motivation to treat sick and disabled children feels like it’s going to be a challenge to say the least. But then I knew my present recovery was going to be slow and drawn-out – and I was right. But I’m getting there and things are slowly improving. Pigeon steps forwards. But steps forwards nonetheless. I think we can apply that to foreign health ministries, right?

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And People Still Really Need Convincing About This?

September 12, 2013

THIS 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.

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.

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. The 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.

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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.

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Shunt Donation Project – Ooooh, LOTS to tell!!

June 20, 2013

I’m knackered. It’s hot (hottest day of the year apparently which, going by how low and below-average the temperatures have been so far this year, isn’t actually much of an achievement) and I’ve just returned from London. I know I need to update you all on what’s been going on and I’m very aware that it’s been a while but so much has happened that it’s literally been a case of not being able to find the time to sit down and write a lengthy post on all that’s happened. I am yet to master the art of the short-but-sweet post, as you will no doubt have noticed if you’ve been following this blog. Since my last post, Four Fab Things have happened and all of them have enabled me to make great progress. And here they are:

Fab Thing Number One

The last time I posted I had just had the three Medtronic shunts donated for Vietnam and was waiting on forty Bactiseal shunts to come from Codman so I could send them to Kenya. The Bactiseals are actually the ‘tubing-only’ bit of a shunt, without the valve bit which regulates pressure. At first I wasn’t sure if they would be able to use ‘tubing only’ but as it turned out it was perfect, because in Kenya they are having specific problems with the tubing-only parts of the cheap shunts they have to use! A shunt-match made in Heaven. Since then there has been a lot of to-ing and fro-ing with Codman (not in a bad way; just establishing what quality measures they need to put in place and what I need to do to meet those measures) and this week we finalised that; they need a printed letter from the neurosurgeon which Mr Albright has written, signed and sent off to me. So as soon as the letter arrives, I’m sending that (recorded delivery!!) to Codman who can then release the shunts to me – and off to Kenya they’ll finally go. I knew when I started this that it would be a slow process once the formalities came into the picture but now we have a procedure established, I can request the letters from the shunt recipients earlier and get the whole process running a lot quicker when Codman next have shunts to donate. So the letter is on its way, the shunts will soon be on their way and Codman and I have an quality procedure in place. Codman box – tick!

Fab Thing Number Two

A couple of weeks ago I received an email response to a general ‘can you help me?’ email I’d sent out to a couple of neurosurgeons about six weeks earlier. The reply was from Mr Lewis Thorne, consultant neurosurgeon at ‘my’ hospital (haha!), the National in Queen Square. He also works at the Royal Free in London. Lewis had actually operated on me about nine years ago when he was a registrar at that time for Mr Watkins. He had clamped off my shunt to see if I could cope without it as I was overdraining badly at that time so Mr Watkins had thought that there might be an outside chance my hydrocephalus had resolved itself and my brain was draining the fluid as well as the shunt, hence the very low pressures I was experiencing. Lewis was great, very kind, friendly and reassuring. Unfortunately having my shunt clamped off turned out to be one of the most hideous experiences of my life as far as hydrocephalus goes (in case you’re wondering, the most hideous experience was shunt infection – both of them). It wasn’t Lewis’ fault that it was so awful though, so I let him off. A couple of days later Lewis came to my bedside and gave me the wondrous news that he’d be unclamping my shunt first thing in the morning as the pressures were going into the high thirties by this time – they should be a maximum of about fifteen. No news has ever been as gratefully received in the history of the world; even Archangel Gabriel and his announcement of the birth of Jesus received a very muted response compared to my reaction to my upcoming shunt-unclamping. After that I didn’t see Lewis at all and assumed he’d left the hospital for pastures new. He had, initially, but returned recently. I found him whilst Googling ‘information about shunts’ one evening. I knew I needed to update myself on the different types of shunt available now so I knew which types would treat different cases of hydrocephalus – it’s not a ‘one-size-fits-all’ in the shunt world! Amongst the results was a link to a lecture that had been given at a neurological institute entitled ‘Everything You Need To Know About Shunts!’. Unfortunately it had been given in 2011 so I was more than a little late. But I pounced on it and was amazed to see that the person who had given the lecture was Lewis Thorne. If he knew everything there was to know about shunts, he was my man! So I’d emailed him back in April and had almost forgotten about it what with everything else that was going on until he replied, with an apology for being late in doing so, saying that he was very interested in my project and would love to help if he could. Result! I arranged to meet with him at his office for a chat and that took place last Wednesday. When I told Mum I’d be meeting with him, she said, ‘does he remember you, do you think?’. I had wondered myself, until I noted that he had begun his email to me ‘Dear Mr Adams’. Clearly he didn’t remember me. I did actually (gently) correct him on that and informed him that I am in fact female, to avoid a bit of confusion – and possible embarrassment – when we did meet, which he was absolutely fine with. I was surprised how nervous I was about the meeting; I had a neurosurgeon actively interested and offering help. I didn’t want to screw it up so found myself swotting as though for an exam on what I’d done so far! Needless to say, I shouldn’t have worried. When I arrived, Lewis was finishing a meeting with some doctors but on seeing me he literally smacked his hand to his forehead and said ‘Jordan! I should have known I’d recognise you as soon as I saw you!’ and asked me to wait in the strangest waiting room I’ve ever sat in. It was full of, er….skulls.

I’m hoping these aren’t previous patients from the National….

Not a magazine or a fish tank in sight. I had to resist an overwhelming urge to play around with them all. Luckily Lewis came in to get me before I had a chance to get my hands on them and rearrange them into the ‘conversations at a bus stop’ scenario I had in mind.
My meeting with Lewis was the most uplifting part of my work on this project so far. I had honestly thought he might offer me some much-needed advice, or give me a couple of contacts but he went above and beyond this. I was glad I’d swotted up though because everything was fresh in my mind and we were able to have a pretty lengthy and detailed discussion on options and plans. He said that this is a cause close to his heart as he had been out to sub-Saharan Africa a few years ago, taking some medical equipment to donate to charities and due to charity politics hadn’t been able to give what he had taken out there. He has ideas for reducing the costs of surgeries generally and also alternative uses of shunt treatments – I can’t go into everything now because a) it’s in the early stages and b) it’s too medical – he would have to explain it properly! Having him on board is so fantastic and such a relief, I can’t begin to describe it. I now have someone who seems as passionate about this as I am and who I can run all the questions I previously had no answers to by. He inspected the donated shunts from Medtronic (as they’re expired) and pronounced them ‘absolutely perfect!’. So we’re working together on producing a ‘business plan’ to present to the Vietnamese government and show them that the surgeries can be and are worth investing in both economically and – most importantly – to ease the suffering of the children. The cost to the government for nursing these untreated children for years until they die is most likely way greater than the cost of cheap but effective shunt surgeries using effective equipment. We are both aware that persuading a communist government who are currently heading down the US-based system of insurance health care is not going to be simple. Lewis wants to get something published as that will carry a great deal more weight. Once we have that in place we can roll it out to more governments who may need persuasion that shunting children is a very worthwhile and very necessary exercise. He also has access to spare shunts which he is sourcing this very moment. I am starting to wonder what the heck I would have done without him now. I had, as I said to him in our meeting, reached the limit of how far I could go alone. All the research in the world won’t change the fact that I am a mere patient who has neither the expertise nor the contacts medically to make sure I’m making the correct shunt decisions. I have expertise in how it feels to have hydrocephalus but that, and a lot of passion concerning the issue, is about as far as it goes! The fact that Lewis is so busy as a surgeon and is still happy to help and give me his time, free of charge, with the support and encouragement that he’s already shown in just a couple of weeks, has made me feel for the first time that we can truly make a difference to untreated children with hydrocephalus across the world. Power in numbers!

Fab Thing Number Three

The same day as my meeting with Lewis, I managed – quite by chance – to secure an impromptu meeting with the surgical manager at Medtronic, the very company who had kindly donated the three shunt systems for Vietnam. Louise (the lady in question) just happened to be at a hospital I was visiting to discuss shunt donations with. The person I was speaking with about their shunts suddenly broke off with a ‘Eureka!’ moment as she remembered that Louise just happened to be in the building that very day and would I like to meet with her? Would I!! Louise was in surgery, overseeing the use of a new surgical drill Medtronic had just produced so she came out to meet me, fully ‘scrubbed up’ in her blue theatre outfit. She was very enthusiastic about the project, the fact that I already had three Medtronic shunts and even more about the fact that I myself have a shunt. This is a detail that does seem to ‘wow’ the medical personnel I come into contact with. To me it’s no great shakes; I have a shunt. And yes, this is why I’m doing this project, because I know how hideous hydrocephalus can be. But sometimes I think they half-expect people with shunts to be ill-looking or not as energetic maybe as I can come across sometimes. I can sort of understand this, given that they are seeing people in hospital most of the time when they’re ill and either pre or post-surgery! I feel like a shunt commercial; ‘Yes! You too can look and act like this if your shunt works properly! Because you’re worth it!’. Anyway, Louise was fantastic and promised to look at the fundraising side of things as well as establishing some proper support from Medtronics overseas suppliers as they’ll have greater numbers of shunts to spare. And she was as good as her word; a few days later I received an email from Louise saying that she’d loved meeting me and she was currently talking to Head Office to get some plans in place. All from a chance five-minute meeting outside Theatre Two!

Fab Thing Number Four

Last but oh-so-not-least, I finally got to meet with Kim Nguyen Browne yesterday, from Go Vap Orphanage!

Kim looking happy with two of the shunts!

We met in London so I could hand over the Medtronic shunts so they can get back to Vietnam and be used. Meeting Kim was like meeting a long-lost friend, although we’ve only ever spoken on the telephone up until now. She, like all the others I have met and who are now involved in the project I only started in April, has an absolute heart of gold when it comes to helping others and I don’t give a toss how sappy that may sound. The work she’s done to help these children already and the contacts she’s established with other charities and organizations helping her is impressive to say the least. She was overjoyed to get the shunts and our meeting was far too brief for my liking but hopefully I may be able to meet her for a longer lunch when I next meet with Lewis or on another of my now-frequent trips to London. She was so helpful in what we discussed and she said she will post pictures of the children who actually receive these shunts and allow me to follow their progress so of course when that happens I will share with you! It will be so amazing to see the faces of the children who will (fingers crossed) soon be out of pain thanks to these shunts. And I cannot stress enough how good it felt to hand the shunts over to her. I thought that moment would take about six or seven months to come about, not two! Kim uses the following as the motto for the Vietnam Volunteer Network she manages and the work they do at Go Vap and all the other orphanages they help; ‘Together we can make a difference’. I’ve learned this lesson more than any other since I started. There was always going to be a ceiling on how far I could get alone. Now with Lewis, Kim, Louise, Mr Mallucci, Tim and Louisa at Codman and every single other person who has helped/shown an interest/given me a contact/urged me to keep going, I’m starting to see that this project now does have, and will continue to grow, LEGS! My determination to get changes made in both our healthcare system (STOP throwing useable products into landfill sites and send them to where they can be used to save lives) and overseas (don’t brush hydrocephalus under the carpet any more when seventy-nine percent of new cases this year will be in developing countries) is absolutely renewed. Not that it went anywhere; it was just wondering which path to take next. Now I have a path. With friends.

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Shunt Donation Project – Three shunts = three lives (and another forty are on the way!!)

May 24, 2013

If you’ve just jumped in, you can read more about my Shunt Donation Project (no. 6 on the List) here.

And if you’re wondering what this ‘F-List’ I keep banging on about is, you can read about that here.

Yep – I have shunts. Three Medtronic shunts – the whole system (valve bit which goes in your head, reservoir bit and all the tubing for the rest of the body). And a manual. They’re actually sitting on my kitchen worktop and I can’t quite get my head around the fact that only seven weeks after I started to try and get this off the ground, I actually have some life-saving equipment.

First three shunts. If this is how happy I am with three, what am I going to be like when the other forty arrive??

These first shunts were donated by a very kind, very helpful and very supportive lady from a hospital. I said to her that collecting them on Wednesday made me feel happier than a seven year-old on Christmas morning. As if that wasn’t enough, the forty shunts from Codman have passed their audit and are on their way! I don’t usually whoop but, seriously – whoop!
It’s been very interesting journey so far. I honestly expected to be faced with lots of ‘we know you mean well but here are the problems and reasons why you should maybe drop it’ conversations from hospital professionals. Not because I think they’re mean or negative or anything like that but because I had no clue about what limitations I might encounter, no idea about hospital policies regarding donating unused equipment and no inkling of whether I would be able to persuade them that this was worth doing. I couldn’t have been further off the mark. All I’ve had is support, help, encouragement and generosity. It’s heartwarming. To think that this is only after the first two hospitals have responded is a good sign. My initial plan to hit as many as I could at once I had to re-think as it was simply too many names/emails/phone numbers/different stages of development for my shunted brain to keep up with. This system is working better: choose a couple of hospitals and then hassle the hell out of them until they submit! (Kidding).
So now I need to get these shunts packed and off to their rightful owners; children currently lying in pain overseas. Quicker the better; I shall update you soon. To everyone who has helped and/or sent supportive comments so far, a MAHOOOSIVE thank you. Let’s keep going, eh!!

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Shunt Donation Project – latest update (and it’s all good)

May 21, 2013

If you’ve just jumped in, you can read more about my Shunt Donation Project (no. 6 on the List) here.

And if you’re wondering what this ‘F-List’ I keep banging on about is, you can read about that here.

The last two weeks have been rather busy regarding the shunt donation; lots of reading, lots of phoning medical secretaries to be passed on to the relevant people to speak to and lots of taking deep breaths and trusting that it will all work out just fine in the long run. Generally the feedback it good; everyone I speak to seems to think it’s a good idea with huge potential and is willing to help where they can. To say that this is heartwarming would be an understatement. More than anything though, it’s encouraging and it keeps me focused. So here’s an update on where I’m at:
I had contacted both my neurosurgeon, Mr Watkins and Simon, the specialist hydrocephalus nurse who is the first point of contact (he’s the go-between between Mr Watkins and his patients) to let them know what I was up to. I didn’t actually expect to hear back from Mr Watkins himself as he’s so busy with surgeries, clinics, conferences and lectures but Simon got back to me straight away with encouraging words and a heads-up about the forty shunts donated by Codman. They’re Bactiseal, which means it’s just the catheter part (the tubing which runs down the body) without the valve attached. When I first read this, I felt like banging my head against the wall but then once I stopped panicking that the whole batch would be useless, I remembered that the surgeons in Kenya are specifically having problems with the tubing of the cheap shunts they are using. They might be able to use them. The actual contact for Codman hadn’t been responding to the couple of messages I had left so I must admit to having a couple of fraught days full of worry. What if Codman changed their minds or just didn’t respond because they’re too busy? What if the shunts would actually be useless? ‘What if’ should be banned from peoples’ thoughts. It’s a pointless and very negative way of thinking because it focuses on nothing but speculation, rather than action. I could speculate for the next ten years about how successful this little venture might be but if I don’t actually do anything about it, it will remain just an idea and not an active project. Having spent the last thirteen years speculating about what I would want to do once out of hospital long enough to actually put my ideas into action, having worrisome ‘what if’ days kind of flies in the face of any kind of progress. So, along with Gloom and Doom, ‘what if’ is , from this day forth, banished.
Of course, I needn’t have worried. Louisa, the lovely lady helping me at Codman, called that very day, apologising profusely because she’d been on holiday and had forgotten to tell me. This is another reason I am consigning ‘what if’ to Room 101; it’s totally unfair to the lovely, professional people trying to help me out who would never just not respond because they’re too busy. It may take them some time to get back to me, but they do get back to me. She said that her manager, who was ‘very enthusiastic’ about the idea of actually putting their otherwise discarded shunts to good use, had decided to put the forty shunts promised to me through a final rigorous audit to ensure absolutely that they’re safe to be used by the surgeons they’re going to. Kind man. This happened (I believe) last Thursday so Louisa felt I should receive them sometime this week. I was going to go up in person to collect them from Manchester but seeing as I am in Kingston near Lewes, the fare alone was in the region of £100. Considering the fact that the only funding I have for this project is from my own pocket, I have to be realistic about costs. I can only work part-time because of my condition (full-time work: been there, done that, ended up in hospital from overdoing it) so my finances, although very carefully managed, are – shall we say – limited? Louisa said they’d be more than happy to courier them down to me and that when I’m up Manchester-way in the future (which I will be later this year) to say hello then. Makes sense. Especially as I have no idea yet how much it’s going to cost to fly forty shunts by recorded delivery to Kenya. So at the end of that day I felt a little more on track. Especially when I received a response from Mr Albright in Kenya (the neurosurgeon wanting the shunts) to my email explaining exactly what he’d be getting and could he use them? It was a resounding yes. Hurrah!
So the next morning I felt a little bouncy – like Tigger – as I went about my day. I decided to walk into Lewes to do my banking, rather than cycle, as it was such a beautiful morning.

Me when anyone tells me they’ve got spare shunts to pass on.

The walk is only a mile and a half but it takes me past fields, the newborn lambs (growing quickly!) which I had helped bottle-feed with my friends’ children at the farm behind my house a few weeks earlier and is perfect for either listening to inspirational music through one’s headphones or listening to the soundtrack of nature (especially nice when it’s raining; you can’t beat rain in the countryside for the sounds and smells it produces). Today however, I chose headphone music. Not the Tigger theme tune, I feel I should add. Just as I was striding along, fresh air in my nostrils and not particularly caring who could hear me belting out ‘Don’t Stop Me Now’ by Queen (you may laugh – but it’s perfect for motivation, energy and a general bloody good singalong), my mobile started ringing. Putting the song on hold, I answered the call (from a ‘Private’ number). It was Kat, a hydrocephalus specialist nurse (just like Simon!) from Birmingham Children’s Hospital. I had emailed her about two weeks previously and heard nothing back so I had got on with chasing other avenues. It has become apparent that neurosurgical staff take about two weeks to get back to me. A good guage to go by. Anyway, like Louisa, she was unnecessarily apologetic about the delay in her response and proceeded to tell me what a fantastic idea she thought this project was. ‘Why has nobody thought of this before?’. I am not a hundred percent sure that nobody has done this before actually. I just couldn’t find any evidence of it online and so far all the neuro peeps I’ve spoken to have certainly never partaken in any scheme like it. Kat was so enthusiastic, she could have been a fellow Tigger. She said that she wanted to present the idea in full to a meeting of neurusurgeons and neurosurgical teams which takes place in Birmingham once every so often; the next one is at the end of June. She asked me to forward a full outline in an email for her to read over so she can get some sort of report together. I was very touched by her response to what had been a rather desperate-sounding email two weeks earlier. No one I have spoken to about this has been certain about just how many shunts/valves/catheters they would be able to free up but to be honest at this stage, that’s not so important. What is important is making people who work in the field aware that shunts are being discarded and for every one that is, an opportunity to save a child in need of a shunt overseas has been missed. And even if the department I’m directly liaising with doesn’t have any to spare at that moment, they may know of someone who does have some. They network for me and in doing so open doors which I wouldn’t be able to open alone. It’s these open doors which may lead to other avenues of help which I may not have even considered yet; ‘it’s not what you know…..’.
So Kat now has a detailed email from myself and I have a renewed energy this week; hopefully by the end of it I’ll have the shunts. And then I’ll feel things are really starting to get underway. I’d better tone down the Tigger-esque excitement every time something good happens though. It could get really irritating.

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