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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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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