Really annoyed and upset!!

We've just got back from the hospital. It was the most pointless appointment ever! They have lost Hannah's notes again (that's happened every time so far). The Haematologist said that she thinks it is coincidence that she has bruised very badly for probably over 2 years and had petechiea for a long time and she recons that the ITP only started 7 months ago so her count should go up soon.

They didn't do a blood test (she hasn't had one since February) and she said we will need to make an appointment for one in about two weeks, but we won't see her or discuss the blood test until 4 months time. At the next appointment, if the blood test result still shows a low count they will try to work out whether it is ITP or something else as they don't seem to think it could be ITP if it lasts more than 6 months in a child!!!

I can't believe we are still no further forward and we will have to wait another 4 months for them to even work out whether it is ITP or something else. I thought they would at least have done a blood test today!!

Sorry, rant over. I had to get that off my chest. I'm so annoyed and upset with the whole thing!!

Wow. I can tell you that I have seen far too many overreactions with ITP in my history on here, but NEVER have I seen such an under-reaction! There are so many problems with everything that you said that I think I might have mentioned the word "negligence" when speaking to them.

Are you in the US? There should never be a need for an appointment to get a CBC. All I ever needed was a script for a lab, or I could even walk into the office of my hematologist any time and just ask for one. I'd get results in less than 5 minutes. You have every right to know the results the day the hemo has them. Knowing results 4 months later does you no good today.

AND - it most absolutely CAN be ITP if it lasts over 6 months. Those people are grossly misinformed or ignorant or something. Is there any place else you can go? I'd start looking right away.

It usually takes a lot to get me riled up but in this situation, I'm almost as angry as you are!

A CBC takes less than 5 minutes to draw - what's their problem!! I have a standing order for one anytime - STAT - with the results available within minutes. Sounds like they're truly "practicing" medicine as they haven't yet learned how to deliver it for real!!

ITP can't last longer than 6 months in a child??? Where did that study come from!

I'd find another MD, and quickly if you can.

I'm guessing the idea is that they aren't going to treat whatever the count so why get a count? Sounds reasonable to me if they are going to treat on symptoms and not numbers as they should.

I'm guessing you are in the UK as the more laid back attitude (and spelling of haematologist) would suggest. Reading of the experiences of US mothers will not then give you the usual UK treatment protocol. The idea in the UK is that treatment is not necessary unless there is frank bleeding and also the side effects of treatments are far more damaging than the disorder.

You do however have the right to have a doctor who explains things to you properly and you are always entitled to a second opinion if you feel that their approach is lacking.

Hannah's doctor sounds exactly like my son's! I come out of every single appointment spitting tacks. Anyway, just thought I would mention that you can ask to get a second opinion - all you have to do is to phone up the paediatrician who you see at the hospital, and ask to be referred to see a paediatric haematologist. The NHS allows you to get a second opinion. I just asked to get Dougie re-referred to the children's hospital - only because its been two years now and it seems like time just to revisit the whole thing. The guy at our local hospital wasn't exactly overjoyed, but he agreed to write to them to ask them to see Dougie. Good luck with it,

Ali

If you are in the UK as Ann suggests and you are feeling upset, you could always go back to the General practicioner and ask for more support. Even in the UK they cannot make a decision without the blood test. A blood test and the appointment a week later is a waste of everyone time even if ruling out ITP because blood counts vary so fast.

I am English and my heamatologist sees me in outpatients annual to give me 24 hour open ward accesss (ie I ring the ward direct if I see any signs and go straight to the ward). When he sees me in clinic he nearly always says - "hope not to see you tonight". Meaning if my count drops in that time - then that is just the way it is and don't worry about ringing up even though just been.

If like as Ann thinks and you are English I would encourage you to think about going to the GP and explain how you feel about what is happening and ask for a hospital transfer as you feel uncomfortable with the delays. And yes ITP can last 6 month or more whatever the age. I have been diagnosed with it for 16 years but only have episodes from time to time. In between time the GP may get the practice nurse to do a blood test and whilst that can be a two week wait for any resultsby the sounds of it - that just as quick as what you are getting now. Or can't you go to a walk-in-centre and ask for a blood test for your child and get some results that way and at least you will know the count and decide what to do next through the GP.

I would be very annoyed if that happend to me and hope you are feeling more positive soon

I totally understand the UK way of watch and wait, but does that mean ignoring it altogether? Don't they even want to track counts, or correspond counts with symptoms?

Hey Sandi;)
Some do. I really trust the haematology department at Sheffield and trust the new consultant though he is seemingly handling it differently (thanks to you guys on this website I am able to learn how he might be thinking and relax) but like him and trust him. I think Grasshopper is having a real poor experience right now and no excuses on the hospital side for loosing patient records etc.... I would strongly urge her to go else where for we can do in this country. It is harder to than America so it seems. We can change GP easily enough - as I did last year. So I assume we can change hospitals by going back to GP if one doesn't want to use the complaints/second opinon route. But I really think she should even if to have a smoother outpatients checkup. In all my time I always had the blood test at the same appointment even if my appointments are there to keep the 'open-access' available to me. Going direct to Ward P3 cuts down 4 hours kicking ones heals in A&E I have learned! Open Access means I can ring the ward now and get advice, help and go in if need be as of last week.
Some Haematologists do care....

From my experience, (which is admittedly quite limited) once UK doctors decide that your kid a) definitely has ITP and nothing else, and b) doesn't have bleeding problems, then they don't worry about ITP here. It really doesn't matter what the count is. And if Hannah has a lot of symptoms then there isn't a load of point in putting a little girl through a blood test just to prove that its still under 20K or something. Dougie's count hasn't been over 20 since before Christmas, and he has three monthly appointments (this last time he didn't even bother to get a blood test cos the symptoms were so obvious it wouldn't have told us anything). I have an informal type of arrangement with the clinic that I can ring and ask them to do a count, but thats more so that I can persuade him to slow down than for the consultant's benefit.

The thing I am surprised is about is that the doctor doesn't yet seem to have decided that its only ITP for Hannah yet. The rest seems pretty normal to me - although I can 100% understand why its annoying, because I find it that way too.

Ali

Thank you all for your replies. I'm not sure that I could ask for a second opinion as the it is a consultant paediatric haemotologist that we see and she comes from a hospital 30 miles away and seems to be the only person who goes to all the hospitals within a 50 mile radius. There is no way we could afford private. Also, we get the 'open-access' that you mentioned Rhiannon and I'm not sure how that would work if we saw a consultant from a hospital several miles away.

I agree with not treating until there are symptoms and I don't think Hannah does need treatment at the moment. She has tonnes of bruises, petechiae everywhere and she takes a long time to stop bleeding if she cuts herself, but that's it. Sometimes I think it would be nice to know her count as the highest it has been when she has had a blood test was 21,000 and since she was diagnosed in October she has already hit her head quite badly, resulting in going to hospital 5 times, two of those being an overnight stay and one a platelet transfussion. If I knew the count and it was higher I'm guessing I wouldn't need to be quite as worried when she hits her head.

Although the open access is really good, I do get a bit fed up with the lack of knowledge from the staff and that half of them don't appear to know what ITP is and how to treat it. The Haematologist says we need open access as there is an increased risk of internal bleeding after a head or abdomen injury. However, I have heard the staff say when we have been in that we don't need open access as there is no increased risk of bleeding.

It is driving me mad. However, I have calmed down about it since Friday. Thank you for listening to me and all your help.

Your hospital and consultant sound so much like Dougie's its uncanny! He has also been seeing a haematologist from a children's hospital 30 miles away.

You might not want to go down that route, but you can definitely ask for a second opinion because thats exactly what we've just done in the same situation - we've asked the hospital to refer Dougie to the ITP clinic at the children's hospital rather than seeing the haematologist at the local hospital every three months. Its going to involve a trip to Manchester on the train rather than a 5 mile drive, but its only once a quarter so its not going to be that bad. It definitely doesn't affect the open access issue at all - Dougie has open access at both hospitals, although clearly we would always go to the local one in an emergency.

Ali

We just got the letter through from the haematologist from this appointment. It says the diagnose is that my daughter has presumed ITP and possible life long easy bruising as she feels that it is coincidence that she has always bruised so has only had ITP for 8 months. But she also says that the easy bruising maybe to do with platelets (or she said something hereditory at the last appointment), but they are not sure and will not investigate until she has a normal platelet count or if she needs an operation or a tooth removed.

So what happens if she has a bad accident and they can't stop bleeding, how will they know what to do if they won't work out what is wrong with her?

I've book myself an appointment at my doctors as I have realised that I have quite a few symptoms of a bleeding disorder so hopefully if it is something hereditory I will be able to sort it out, but if not then I'm guessing I just need to question the haematologist when we see her next.

Arghh hospitals drive me mad!!

The most likely disorder is Von Willebrands. www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001571/

Don't worry about what would happen in an emergency because the treatment to stop bleeding would be the same whatever the cause. Good that your daughter is tested for it eventually though as it can be the cause of miscarriages and horrible periods which can be helped.

Thank you for your reply Ann. I was thinking about Von Willebrand myself. I have had to wait three weeks for an appointment at the doctors, so I go on Monday and will see what they say.

Can't believe I just phoned the hospital to see if the results had come back and they said that the blood sample clotted so they couldn't do a platelet count and they haven't tested anything else. They suggested that we wait until after the next appointment until they take more blood (mid September, 6 months since the last count). I said that I wanted it done the week before so that we can discuss it at the appointment.

Has anyone else had the blood test sample clotting. She implied that it was the hospitals fault. Is it their fault or is it just something that sometimes happens?

Yes, Dougie's blood sample has clotted a couple of times in the last two years. I think its to do with how they take it. I'm also now insisting that we get a count done BEFORE we see the consultant - its OK if we go to Manchester Children's Hospital because there they do a count, and then you see the doctor when the result comes through, but at our local hospital, they've been doing the count after you see the doctor, which always seems to be worse than pointless to me!

You might be able to get your GP to order a blood count if you asked them - go and say that you are worried and would like one done. I reckon they would be very sympathetic.

Good luck, Ali

Grasshopper - whereabouts in the UK do you live? It doesn't sound like you are getting a great service from your local hospital. You can ask for a second opinion - it might annoy your current doctor, but maybe it would be worth it?

I've had that happen so many times that they stopped doing anything but instant counts (they don't send it out). I've had the special vials with heparin, but it didn't matter.