Action For Hydrocephalus (My Charity)

A few years ago I started sending expired shunts and neurosurgical equipment to developing countries where hydrocephalus treatment is severely lacking.  I’d been unable to stop thinking of some videos I found online (whilst very ill with a failing shunt myself) showing untreated babies and children overseas.  They tend to have very large heads as the fluid builds up inside their brains (before their head plates have had the chance to fuse).

Photo courtesy of Daniel Cima

To think that I had the exact same condition but just the good fortune to be born in the UK where treatment is standard made me have a few sleepless nights, to say the least.  I wanted to help them in some way; but how on earth could I do that when I a) wasn’t a surgeon and b) didn’t have a clue what to do?  So I started asking hospitals and companies who manufacture shunts if they had any spares so at least I could send some over to the affected countries (the expense of shunts and equipment – if available at all – is a key contributing factor to why surgeries are not performed).   I managed to donate to quite a few medical centres in developing countries, all of whom were pleased and relieved to be receiving some help.  After six months of going it alone, I knew I needed help.  Preferably from someone who knew way, way more than I did!

Lewis Thorne

In 2013 I enlisted the help of Lewis Thorne (consultant neurosurgeon at the National Hospital for Neurology & Neurosurgery in Queen Square, London) – he had operated on me a few times before and I knew he’d done a talk on shunts recently so initally just wanted some advice on what I might be able to send abroad.  He joined me on my mission and we co-founded Action For Hydrocephalus, which became a registered charity at the end of 2016.  Since then we have been joined by Greg James, consultant paediatric neurosurgeon at Great Ormond Street.  We have worked with Marinus Koning from Reach Another Foundation, providing neurosurgical equipment for their expeditions to Ethiopia to perform shunt surgeries for hydrocephalus patients.  We have also equipped surgeries in Uganda, Vietnam and Kenya, establishing many good relationships with generous hospitals and medical suppliers along the way who have helped us out so often.

Greg James

  In all these instances, if we had not sent the items out, the surgeries would not have been able to be performed and the children would have remained untreated.  Late presentation of the condition is a huge contributing factor to the amount of terminal cases of hydrocephalus and we have been designing and manufacturing simple diagnostic tools to be used by new and expectant parents.  Teaching them the signs to look out for and providing them with the simple apparatus to correctly and safely assess their own children (rather than rely on often non-existent medical assistance) will increase the chances of the child getting the help it needs quickly.

Marinus Koning delivering our equipment to a surgeon in Ethiopia

  It is long, slow work – mainly due to the amount of red tape we encounter when trying to get the equipment safely to its destination!  But the feedback we receive from the surgeons and doctors using it reinforces just how important it is to try and help.  In Ethiopia, they simply don’t have the necessary items to save the lives they need to.  And that is where we are able to help.  Now we are focusing our attentions on Vietnam, where so many babies and children are not treated or are abandoned and left in orphanages to die long, horrible deaths from untreated hydrocephalus.  We are working on developing a training exchange programme with surgeons there as well as providing equipment, the diagnostic tools (to be used in the rural areas where poverty is prevalent) and Lewis and Greg’s expertise.  Vietnam has proved to be the most difficult location to achieve progress but we are determined and now have some great contacts who are helping us slowly but surely move forward.

Shunt kits in the living room! (And Hoshi in the distance).

So for now my living room remains littered with shunts, bone punches, gigly saws, retractors, probes and a host of other (fairly macabre-sounding) items I’d never heard of before starting this work but which now get me very excited indeed when I hear more are on their way over.

If you would like to read more, here is the link to the website: Action For Hydrocephalus.  It’s very, very basic – I made it, after all – so do excuse that.  But it gives an idea of what we’ve been up to.  I need to fundraise next year so shall be setting up a donation page for anyone who would like to help us.  So far I’ve been able to fund things myself but now we are stepping up our work, I have to be realistic about rendering myself bankrupt!