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.
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 .
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.
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.
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:
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.
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!
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!!
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.