New scared and cross and frustrated with gp

A place exclusively for people aged 39 and over to discuss issues affecting older GUCHs

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New scared and cross and frustrated with gp

Postby dreamwombat » Wed Aug 28, 2013 10:58 am

Hi anyone. Been diagnosed with big ASD just a week ago. Getting to terms mentally that I have to have several operations. My GP ignored me for 22 months Has anyone else had this problem. 7 doctors before someone referred me even though my mother has a CHD I now have to have ablation. Anyone know anything about this procedure? Then the big op. anyone know anything about recovery times? Am in a world of fear and confusion?
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Re: New scared and cross and frustrated with gp

Postby Mike_H » Thu Aug 29, 2013 10:18 pm

Hi

Welcome to the forum.

I can't help you with your questions, sorry.

Just wondering which hospital you have been referred to to have your operation.

Mike
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Re: New scared and cross and frustrated with gp

Postby dreamwombat » Sun Sep 01, 2013 6:47 pm

University Hospital Coventry. (used to be Walsgrave) Any one know anything about its success rate?
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Re: New scared and cross and frustrated with gp

Postby Mike_H » Sun Sep 01, 2013 8:41 pm

Would it be possible for you to ask your GP to refer you to The specialist Congenital Centre at the Queen Elizabeth II hospital in Birmingham before your operation?

It is recommended that every Adult born with a congenital heart condition sees a specialist at least once.

Here is a link to the specialist centres in the UK

http://www.thesf.org.uk/help-advice/spe ... ntres.aspx

Regards

Mike
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Re: New scared and cross and frustrated with gp

Postby Pat M Straughan » Mon Sep 02, 2013 8:16 pm

I agree with Mike's suggestion. Although the cardiologist at my local hospital is well-thought of in the profession, the overall facilities at the GUCH clinic I attended in London are much, much better.

Once I realised through my own researches that I was entitled to see a GUCH specialist, I went to my GP armed with information from this website. She hadn't even heard of GUCH clinics but I quickly got a referral. I left her with a copy of the article from this website to read.

My local hospital doesn't do heart surgery so I would have needed to go to London anyway. Had I just followed the referral system from the local hospital, I would have been sent for surgery to a different London hospital which does not have a specialist GUCH clinic.

At the hospital where I was treated, GUCH patients of all ages have different surgeons from other heart patients as well as attending specialist cardiology clinics. The level of specialisation is amazing.

Do as much research as you can before going to your GP and take advantage of the help suggested.
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Re: New scared and cross and frustrated with gp

Postby paula-43 » Thu Sep 19, 2013 6:58 pm

Hi dreamwombat
I had an ablation in February this year at the QE Birmingham it was a small incision in the groin area , mine was a 10/15min procedure in the catheter lab, I came straight round as I was only sedated no general anaesthetic I was a bit sore and very bruised but back on my feet gingerly within 12 hours and back to normal within a couple of days. Unfortunately for me it did'nt work so I'm having another one in November .
I agree with Pat and Mike and if you can see a GUCH specialist all the better. Good luck and hope all goes well for you

Paula
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Re: New scared and cross and frustrated with gp

Postby dreamwombat » Sat Oct 19, 2013 4:36 pm

Thank you. After waiting 9 weeks to see a consultant I discover ablation will be 2-3 months away yet and OHS months after that. The not knowing what is happening is frustrating and stressful. However I have accidentally found out I may be going for OHS to Birmingham. So maybe that referral has already happened.
Communication is appalling as originally led to believe it was all happening November/December time and now it looks like February/March :?
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Re: New scared and cross and frustrated with gp

Postby Mike_H » Sat Oct 19, 2013 10:00 pm

Hi,

I would suggest the referral has not happened otherwise you would have gone to see the Cardiologist at Birmingham before any decision about procedures and operations was taken.

Ring the specialist nurses up at Birmingham and ask them to look if you have been referred. If the answer is no then ask them how you get refereed to see the GUCH specialist Cardiologist. If the answer is yes ask them when your appointment to see the cardiologist is.

The information I have for Birmingham is:-
Nurses - Susan Hawkesford & Nicky Pope
Cardiologists - Dr Paul Clift, Dr Sara Thorne & Dr Lucy Hudsmith
Phone numbers are - 0121 627 2959 & 0121 627 2870
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Re: New scared and cross and frustrated with gp

Postby dreamwombat » Sun Oct 20, 2013 11:26 am

Thanks Mike
This site and message forum is so very helpful. The name Dr Thorne was bandied about several times on Friday as if I should know who they were. Your help is so valuable.
I shall ring this week.
I have been told not to worry as I am not "in danger". However in past 2 months something must have changed. I spent 18 months asking doctors for help when the palpitations started and they all said your heart sounds fine, or if I went to hospital walk in centre I was told your ECG is normal. However now a murmur can be seen on the ECG and heard easily on a stethoscope. Even the two medical students could hear it. Any thoughts??/
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Re: New scared and cross and frustrated with gp

Postby buttyboy21 » Thu Dec 11, 2014 10:30 am

Only just read your post.... How are things, i was diagnosed with 2 large ASD last october and had surgery to repair them back in feb it's been very hard.
Let me no..Ian
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