Just need a little rant......

I've just spent nearly two and a half hours on the phone and an additional £130 to get travel insurance that covers ITP!!!!! So many companies just told me that the condition would be excluded from the policy on the grounds that Dougie spent about 5 hours in the hospital 4-5 months ago because he had had a few nosebleeds and they wanted to check his count. As it turned out his count was 10 or something and he didn't get any treatment anyway. If the doctors surgery had been able to do the count, I would have gone there and not had the problem with the insurance - but the doctors surgery has some stupid policy that kids who need blood tests have to have a paediatric nurse do it, and they only have them at the hospital. GRRRRR.

Dougie has never really had significant medical issues with ITP, he's been treated minimally, and I've been to see the consultant and got medication to take with us "just in case". Even more annoying, our destination (Crete) in the EU, so its all covered by reciprocal arrangements about emergency health care anyway - you just have to get a card to confirm this and take it with you.

Anyway, this one hospital visit took the cost of the policy from £48 to £179, so I am not happy. Its probably nothing to those in the US who have to have medical insurance all the time, but its a big deal to me. Sorry, just needed to rant - Bloody ITP!!!

Ali

How annoying. You must be so mad having to pay an extra £130!!

We haven't been on holiday since Hannah has been diagnosed and I hadn't even thought about the insurance being a problem. Hannah has had on average one overnight stay at hospital a month since October so I'm guessing that means insurance will be a problem for us then. Maybe we need to just holiday in the UK!

If you do need to get some, try RAC Insurance. Most of the ones I tried just wouldn't cover it at all or at a reasonable price if there has been an inpatient stay within the last 12 months. Also, seeing a consultant seemed to cause problems for some policies. I've always gone to the Post Office before but they wouldn't cover it at all even if I paid more.

I hope Hannah manages a hospital free month sometime in the very near future! That must be very stressful. As for us, I think we might be going to Cornwall or somewhere next year!

I live in the US...my daughter was diagnosed with ITP since october 13th 2010 and has been diagnosed since then with lupus...hemolytic anemia and evans syndrome....when we first received the diagnosis we did not have insurance at all....and we received help for partial amount of the bill because i make "too much" money....and then i started with insurance in january 2011....helped but the treatments are so expensive here that i will never be able to catch up....ever....so i totally understand....the first bill for her hospital stay was almost $60,000...and she has been in and out of the hospital just about every other week since then.....it is so depressing....but like i said i definitely understand.....tina

Tina,

OK, I am definitely put to shame - what on earth am I whinging about £130 for, because it is not even in the same ballpark as your $60K. I can't ever imagine paying that sort of amount of money off; there is probably a street somewhere in the UK where you could still buy a house for that much!!

You just make me feel really thankful for our National Health Service. It definitely has its problems, but at least I don't have to worry about bills when my family are ill and in need of medical care.

I was reading your other post about Carina, and I was going to comment that I've always found it useful not to try and second guess where counts are going. Sometimes they appear to be going in a sort of pattern down but then stop, sometimes they go back up again, sometimes they speed up (or down). You will drive yourself mad trying to see a pattern to it. Its easier to go along count by count, enjoy the good ones, try not to get too upset about the not so good ones.

Good luck with the next one though!

Ali

Thanks Ali....i know it is crazy here....why i dont know...and it only seems to be getting worse....so we shall see what happens and thank you for the advice on the counts...i guess since that is what they look at to base themselves on what they need to do it only seems like we should keep an eye out to see if anything is working but youre right....they are not dependable in that area i guess....tina

Hey Ali,

It;s been a while since i've been on here....summers here are so busy especially with wedding season in full bloom. Just wanted to say hi and see how Dougie is doing, i'm always thinking about you guys and many of the other families that i've gotten to talk to

Deanna

Thanks for asking Deanna. His platelets are somewhere between 10 and 20 most of the time but it doesn't seem to produce symptoms until he gets into single digits. We've just been to Crete for our holidays, followed by a few days in the Lake District with a friend and her kids. We had a bit of a drama on the last day in Crete when he bit his tongue by accident and it was still bleeding 2 hours later - but it stopped eventually. He's a bit bruised at the moment.

I am a bit upset about him today, but its not really related to ITP - today he was talking about the fact that his wrist hurts (don't know why) and he said that some part of him hurts every single day and his "normal" is that his body hurts - just thought it was a really sad thing for a 12 year old to say.

Crete was lovely - all blue skies and sandy beaches, mixed with great history.

How's Devyn doing these days? I hope he is swimming in a sea of platelets!

Ali

Hi Ali,

I know Dougie has ITP and you have to stay on top of things like aches and pains, but my perfectly normal non-ITP 11 year old would be quite capable of saying something like that. Monday his elbow hurt (fell and scraped it). Yesterday his knee hurt (too much bicycling?). Today his feet hurt (walked miles with his camp - was quite pleased about this). I think if they're very active, then they're going to have scrapes and strains and something that hurts all the time. Of course if it seems to be more than that, then you have to check it out, but I think it could be normal for an active child.

Lily

Lily, thank you, I know he is a normal kid really, but its really good to be reminded. I tend to compare him with his 3 brothers, but they are clearly a bad reference group being mostly ache free!. Also, I think my feeling of guilt the other day was only partly to do with his physical state - I am feeling bad because I've been at work most of this school holiday so the boys have been at home in the care of their big brother!

Actually, I don't think Dougie's aches and pains have much to do with ITP. He's got very flat feet with barely any arch, and coupled with hypermobile joints, it seems to cause him a lot of ankle and knee (and occasionally hip) pain. We are waiting to see an othopedic specialist with him to see if they can suggest anything - LOL, the GP said he could see there was no arch in his feet before Dougie even took his socks off, and that was always a bad sign!

I hope your son has a few ache free days soon anyway!

Ali

Hi Ali

Am in the UK myself and have had ITP since 1994 had spleen removed etc and keep going in hospital for treatment whenever the count is below 10 and I have found Age Concern very good for insurance. I only would pay an access of £40 if I had needed to use it and so far never have done.

Once we had to cancel a trip as I had meningitis and they my parents got their money back. Somehow I hadn't bothered with insurance that year so whilst they lost money spent on me I can safely say I - myself never claimed. That was just pure luck

However my mum did get to hear that they are being stricter with people who have been on steroids in that they wont cover them without a whole year between the treatment. How true that is I don't know becauuse we hadn't renewed the insurance this year due to my platelets going down more often. Hardly would have managed to get anywhere planned this time and its pot luck so far that we get to go to Edinburgh Tattoo this coming week.

But up till now Age Concern has been excellent with me and as I say I have only to pay an access of £40 if I need to use it and over the time I haven't. I will have to find out about this steroid business though as do want to try and go away a bit more myself next year be it coach holiday and using their insurance which is what I like to do if I go by coach because they know their own insurance policy and if anything happend at all they know quickly if its included.

But yes - Give Age Concern a try (I don't think its age related though not sure. Am 43 but my mum was paid member of staff initially when first took out insurance and things I know are extended to family etc. But it could well be worth your while and I know Age Concern was listed in the British ITP support Association in its early days - or rather more accurately possibly in my early days of ITP)

Hope you get something more appropriate. This EU business sucks but it is how it works. I like the dentist when I have to take proof of benefit when signing my NI number away. If get a wrong digit we get a letter anyways from the NI human resource team fining us - and giving us a chance to contest if it wrong because I did write the wrong digit once and got that. So why the dentist needs benefit proof ontop of NI number beats me but it is what they ask for. So just like the EU it beats me why we need the health card and insurance. When it all gets sorted out anyways but it is what they ask for though rather steep I agree.

Yes, I recommend you having a look at Age Concern as they have served me well and it only the steriod issue this year and we don't actually know because not tried to renew it - yet. They take each case individually. Though they do call ITP Platelet Imbalance and am a bit wary because it not that and wonder what would happen if I do need treatment abroad and get told I've not declared it beause it different name. Luckily not needed to - just concerned by their usage of platelet imbalance.

Hope you get a good holiday