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Lindylou | 18:56 Tue 03rd Jun 2014 | Body & Soul
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Hopefully this is the correct place to post this as there doesn't appear to be a 'heath' topic. My son has been diagnosed with a congenital heart problem that hasn't been picked up by the GP before now - despite suffering from extremely high blood pressure and numerous other symptoms. He's been waiting for an MRI scan for well over nine months prior to the recommended (by his GP) open heart surgery. Is this reasonable/appropriate? I don't think it is. He is only 33 years old and his wife is newly pregnant. He's now been given an 3rd app after the previous two appts were cancelled/postponed for various, inappropriate in my opinion, reasons. This appt isn't until the middle of July. So, another six weeks then, making nearly eleven months in total. There are problems within the cardiac dept at our local teaching hospital and there are reports of people dying whilst awaiting appointments. To whom - and how - can we complain? We live in Wales.
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No, that is not acceptable, but going through a formal complaints procedure is likely to take a long time. I'd be inclined to ask my GP to chase it - urgently.
Am also awaiting treatment for heart problems ... I was told by chief cardiologist that referrals had to taken up and some treatment given within 18 weeks. I agree that your son must go back to his gp and ask for him to re refer as a matter of urgency. It is an unacceptable wait.
has he seen a cardiologist? Surely a GP can#'t decide that opern heart surgery is the treatment of choice?
Hi lindylou its NICA i fhnd it disgraceful and unacceptable wot is happening with ur son i myself ave had 2 major spinal surgeries and 3 mri scans 1 and 3 tk only a matter of up 2 5 wks but my second 1 i was being messed around like that i rang every1 my gp consvltant and mri place and did this weekly and told them i wudnt giv up so b a
lot easier just 2 giv me appointment and no mre cancellations otherwise wud take it much further i was very polite but firm at the same time also ask 4 a cancellation appointment amazing how many they do ave im in nottingham and our hospital is also a teaching 1 i really do feel 4 u all being messed about like this and bfing such a serious problem and a new baby cuming as wel
From your description, it son has what is known as coarctation of the aorta, a congenital narrowing of the main artery from the heart.

It is not an emergency and is often only picked up in the 20's and 30,s.

An MRI scan is required to pick up any other cardiac abnormalities.

Whilst the wait for an MRI scan appears to me to be unacceptable, no damage is likely during the waiting period.
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Thanks for your answer Black Cat. Its not a problem with his heart itself but with the aorta. A really major problem. Had an Xray which has highlighted what is actually going on but needs an MRI scan to ensure that fixing it won't cause any - even more - problems. Have seen the Xray myself and its really scary. Can't understand why it wasn't picked up before and why its taking so long to even get to see a Consultant, especially as his GP and the people who did the Xray all say how urgent it is. I mean, they can replace hearts now so I'm pretty sure a (major) problem with the aorta shouldn't be too difficult to fix but it is urgent. And they're not doing anything about it!!!!!
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Thanks Sqad. It is causing problems. His GP is very concerned. As were the people who did the original Xray. He's due for an MRI as they apparently believe that fixing the problem could cause him to 'blow a gasket' as it was put to him. Hopefully, once he finally gets to be seen by the Cardiology Dept something will be sorted. Although its not likely to be done in Wales but in Bristol. Hopefully the problems there in Bristol have now been sorted. Its all very worrying. I've worked for the NHS for nearly 20 years and can't believe how the service has deteriorated over the past few years. Too many chiefs/managers and not enough Indians/doctors/nurses.
OK Lindy...
are you saying he can't even see the Cardiologist until after the MRI scan? If that's the case, would he have the money to have the MRI privately?
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Thanks for your reply Black Cat. Unfortunately none of us has the dosh for a private scan. We have enough to live on... if we're careful.... but not for the 'extras' such as NHS scans etc. Though I'm so grateful we don't live in the States. They'd probably let you bleed to death in the gutter if you don't have a credit card.

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