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.

 

 

 

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2 Responses to “A Rather Overdue Update”

  1. Diana June 16, 2016 at 6:50 pm #

    I will help in any way that I can. I had a revision in early February, but my shunt is malfunctioning and my ears feel like they are going to pop due to pressure. My head is aching and I am sick to my stomach, but I know I will be ok. I log onto these forums when I need hope. When I am better, I promise to give back. I authored 2 books this year and am not giving up. Even though sometimes we may feel the odds are against us, I am living proof that those of us living with hydrocephalus can make a big difference. Bless all of us!

    Diana

    • jordantheheadcase June 16, 2016 at 6:57 pm #

      Hi Diana.

      That’s very kind of you, thank you so much. Sorry to hear you’re having problems like that though! Are you having treatment for it? As you say ‘I now I will be ok’ I presume that you are but if for any reason you haven’t seen your surgeon about it, please do so asap! Jordan x

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