Okay, so today I am really angry!! I feel like I am banging my head on a brick wall. The doctors I have had the (mis)fortune to have been involved with since we arrived here have been arrogant, condescending, ignorant, incompetent, patronising or all of the above!

Today I had my first consultant visit for my pregnancy (I am currently 9 weeks) and I was hoping to be booked in for my CVS at 11 weeks. He asked to see all my notes from my previous pregnancies, which is something we dont' actually get from our doctors in Singapore or Japan (and the Japanese ones aren't in english so they would be no use to him anyway). I asked why he needs previous notes and he explained that he needs to know about all my pregnancies and labours. I explained that since I personally went through all of them myself, I would happily give him details (either brief of extensive) about all my pregnancies and labours. He wasn't happy with that. He says he can't treat me effectively without prior history and asked if I can get it sent from Singapore. I told him I can ask, but even if they say yes it could take some weeks, and he told me he can't book me into a CVS without previous notes. Once again, I explain to him that I personally know what went on in all my pregnancies as, having a science/anatomy/genetics background, I would ask the doctors all sorts of questions and ask for different things to be explained. I pleaded with him to let me have my CVS at 11 weeks so that I would still have plenty of time to deal with the results once they came back (and especially if results were delayed for some reason). He said I would have to have the Nuchal Transluscensy test first at 12 weeks and then book in for CVS a week or so after that!! He also told me I would first have to see a genetic counsellor, and I told him that was not necessary as I have been through this before and have talked to many genetic counsellors since James had his dx. After much protestation from me (and lots of deep breathing and counting to 10) he said he will book me in for my CVS "when he can" at Kings College, but I would still have to see a genetic counsellor for the results. Once again, I explained to him that I know my options and that we have already made our decision what we will do if it is a boy with DMD (which is terminate). He said, well it's your decision! No shit Sherlock!! I have walked out of that hospital today so angry and frustrated, and am now looking up private antenatal care.

Does anyone have any info on going private or how I even find a private clinic/doctor? The only one I could find is in Portland Hospital in the city, and that's a little too far and way too expensive. I just want a private consultant but am willing to have my baby with a midwife in the nearby hospital. Maybe I should just go back to Australia, or better to Singapore, to have it. I was really excited coming here to a system of free medical, and thought it would be smooth and efficient, but it hasn't worked out that way at all. I'm at the end of my tether!!

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Replies to This Discussion

omg!! what a tosser! I think the very least you shoud be having is an ffDNA test at your stage to determine sex. You may not need CVS if it comes back female. All thatw ill happen is the genetics team send you a package..including needle and blood form, then u go your gp surgery get a nurse to do it for , then you send it off via the post! The results are back within 5 days.

I cant believe the crap you are going through with this system, you must be so fed up :-(

x
Well, after finding a lady who is a private midwife (google is your friend) and asking the questions, I have finally found a hospital that has bent over backwards to help me and they are organising all my scans, tests, and antenatal care! My faith in NHS has been restored!! The midwife gave me so much information, more than either my GP or the obstetrician at Beckenham Beacon could give me, and she recommended Queen Mary Hospital in Sidcup, Kent. I talked to them and they were understanding, compassionate, sympathetic to my concerns, and just downright helpful!! Yay!!!! It looks like I'm having my baby here afterall!!
Oh Sharyn I'm so pleased that you have finally found some people to help. Cannot imagine what you have been going through...hope you are feeling a bit more positive now. Fingers crossed they get the appointments sorted out for you as soon as possible. Take care hun xx
thank god for that!!! Are you having an ffDNA or going straight to CVS?
Going straight to CVS. I need testing for downs syndrome anyway as I'm already 37. I don't want antoher child that's anything less than 100% healthy or else it's too much for our family unit to cope with.
ah makes sense! Good luck with it all hun x

Sharyn Thompson said:
Going straight to CVS. I need testing for downs syndrome anyway as I'm already 37. I don't want antoher child that's anything less than 100% healthy or else it's too much for our family unit to cope with.
i second that Yay!! and a little cheer for the NHS
what a relief for you... and good luck with the tests x
hope you're gonna change that gp too ;-)
Anne, thank you for the message on facebook. I haven't had to use it, but if things go pear-shaped with this hospital (which I now doubt) I will follow up that website you recommended. And thanks to everyone for their words of encouragement - it's great to get advice off others in more of the know that I am! Cheers!

anne said:
i second that Yay!! and a little cheer for the NHS
what a relief for you... and good luck with the tests x
hope you're gonna change that gp too ;-)
So glad to read you've got things sorted, as if you don't already have enough on your plate! We had genetic councelling and was told I qualified for IVF and pre-implantation genetic diagnosis. We got the ball rolling, had been given all the paperwork to fill out from Guys, etc, and then got a phonecall saying that because Owen was healthy, we don't qualify and will have to pay if we still want it! They knew I was not a carrier, they had just given me the test results and that Owen was ok when we spoke one on one for an hour, they even met Owen!!! We definitely want one more...they've put the fear of god into me and now tell me I don't qualify. If we hadn't qualified from day one that would be fine and accepted, but for 3 months we'd been getting excited about it all, only for it to be taken away. Surley, with or without Owen, the risks are still the same? I feel like they've jinxed me! xx
This is why we have to take the CVS route, and the thought of terminating if it is a boy with DMD is something that will devastate me but I just can't do that to my family and future child. I wish we could have done it a different way, but I got pregnant accidentally so this is our only option. I really despise when things are insinuated and then taken away - that truly sux! So what do you think you will end up doing? I'm not a carrier either, but that doesn't make the decision to have another child any easier, does it?

Kelly Richardson said:
So glad to read you've got things sorted, as if you don't already have enough on your plate! We had genetic councelling and was told I qualified for IVF and pre-implantation genetic diagnosis. We got the ball rolling, had been given all the paperwork to fill out from Guys, etc, and then got a phonecall saying that because Owen was healthy, we don't qualify and will have to pay if we still want it! They knew I was not a carrier, they had just given me the test results and that Owen was ok when we spoke one on one for an hour, they even met Owen!!! We definitely want one more...they've put the fear of god into me and now tell me I don't qualify. If we hadn't qualified from day one that would be fine and accepted, but for 3 months we'd been getting excited about it all, only for it to be taken away. Surley, with or without Owen, the risks are still the same? I feel like they've jinxed me! xx
Sharyn, Have you found out your results? I just had CVS done on the 22nd of January. I hope to find out the sex of the baby today or tomorrow and then they will continue on to the DMD testing. I have one son with and one son without. Keep me posted on your situation.
-Tamara

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