April 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;

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.

 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!

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, 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.  

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!