Does anyone have a list of worldwide hospitals that have a paediatric neurology department?

Anna_and_Saxon

My two year old daughter was born extremely prematurely at 24 weeks and suffered a bilateral Grade 3 brain haemorrhage, resulting in acquired Hydrocephalus and.Cerebral Palsy. She has had two neurosurgeries at the Bristol Children’s Hospital: to fit an ommaya reservoir (ventricular access device) and for an ETV (Endoscopic third ventriculostomy). 

This second surgery was a success, however, her Consultant has stressed that her hydrocephalus could return at any point in her life; when travelling to other places in the world, it would be sensible for her to be within a couple of hours of a hospital which can offer emergency neurosurgery (to drain the fluid from her brain and perform further surgery as necessary). 

So I am looking for a list of worldwide hospitals which have a paediatric neurology department (which would also be accessible for us to use with UK travel insurance) so we can determine where is safe for her to travel until she is 16 years old in the first instance. 

Does anyone have this information? Or know where I can find it? 

(We already have this info for the USA, but no where else in the world (and have already contacted Scope, Children’s Neurology Foundation and the World Neurology Federation)). 

Many thanks in advance for any help you can offer! Anna :-)

steve51

Hi @Anna_and_Saxon

Good Evening & Welcome ??

I’m one of the Community Champion’s here at Scope.

Yes I have also had a Stroke (Brain Haemorrhage)

I have found some info below.

https://www.ispneurosurgery.org/

Please please let me let me know if you have any problems with this?????

@steve51

chiarieds

Hi @Anna_and_Saxon - & welcome to the community, Anna. I don't know if my daughter may be able to help you as she is a travel agent. I've asked her to see if she knows, but I can't promise she will have come across this before.

I wonder if the charity 'Shine' may also be able to advise. You can also get a shunt alert card from them, which mentions an ETV.  Please see: https://www.shinecharity.org.uk/  & https://www.shinecharity.org.uk/advice/shunt-alert-cards

chiarieds

Hi again @Anna_and_Saxon -  Quick response from my daughter. She says travel to Europe would give the best price as far as insurance goes; if you go to the USA or further afield, this will cost more. However the USA is more advanced if treatment is needed.

She says the following site is good for insurance advice: https://www.moneysavingexpert.com/insurance/pre-existing-travel-insurance/

She also sent the following link which lists hospitals with paediatric neurology departments, which might be helpful (presuming you would holiday less than a couple of hours away). Please see: https://www.health-tourism.com/pediatric-neurology/

She hasn't had this question before, but if you have any particular holiday destination(s) in mind, may be able to advise a little further.

Anna_and_Saxon

Thanks both for your advice and the links - very kind of you and all super useful! And @chiarieds thanks so much for checking with your daughter - we didn’t know you could get awareness cards for Saxon’s condition too which sounds really useful. Lots to look through - will let you know if we have any further questions!! Thanks again ?

chiarieds

Your most welcome @Anna_and_Saxon . With the link to hospitals offering paediatric neurosurgery, there's also a 'browse by country' link to the side, or scroll right down to the bottom of the page, & click on other countries there. My best wishes to you & Saxon.

steve51

Hi @Anna_and_Saxon

That’s my Pleasure.

It’s great to see my good friend @chiarieds.

Please let me know if there’s any further help that we can offer you ????

@steve51

Tori_Scope

Hi @Anna_and_Saxon, and welcome to the community! It looks like @steve51 and @chiarieds have been able to provide you with lots of useful information. You might also find this page interesting, as it contains some links to travel groups and bloggers that might provide you with some more support and insight into travelling with your daughter.

As @steve51 said, please do let us know if there's anything else we can help you with, or anywhere else we can direct you to I look forward to seeing you around!

Anna_and_Saxon

This looks really helpful - thanks @Tori_Scope ?