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

9 May

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.

afhethiopianpatient2

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 .

shuntkitsinlivingroom

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.

photo-collage

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.

afhethiopianpatient1

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.

afhdonationreceived1

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!

afhdonationreceived2

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!!

afhethiopianpatient3

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.

A Rather Overdue Update

16 Jun

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 photo

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.

donationsalltogether1

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.

Greg Came Back  (1)

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. imageedit_1_2314091879 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. imageedit_3_6437559206 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.

 

 

 

Okay…total U-turn….

19 May

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?   

Image

This is da life.

New Season, New Directions…

7 Apr

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.

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!

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, 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.  

Lovely shunts from Sophysa

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!

I am not a patient patient.

21 Jan

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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