Should adults with congenital heart conditions be referred to specialist centres?

[Wajeehakamran]

I have been thinking about this quite a lot recently and wanted to ask if anyone else has had a similar experience.
I was born with a heart condition and have always been followed up locally. It has never really been questioned.
Everything has been described as stable, so I assumed that meant everything was fine.
But recently I came across information about specialist centres for adults with congenital heart conditions, and it has made me pause.
Now I am wondering whether I should have been referred already.
It has made me question whether I have just stayed in the same system without the right level of input.
Has anyone else had to ask for a referral themselves?
Or is this something that is meant to happen automatically?

Hi! I find this interesting as I also have a congenital heart defect and after it was diagnosed I received nothing!! After 2 years I got referred to a cardiologist who has since discharged me after being “stable” for a while. They simply said go to my GP if I become symptomatic. Even my kids were meant to be screened and the GP didn’t want to know!

I’ve had a heart condition since I was a teenager, I’ve ended up in A&E numerous times. From my experience, unless you are having a heart attack or have died the medical personnel do nothing. It took 4 cardiologists before I got a correct diagnosis of Mitral Valve Prolapse (& now the other one is floppy to). The 2nd cardiologist barely tested me, just lectured me on not making a big deal about a few weird beats (it was every 2nd beat, & would sometimes stop for 4 seconds). The cardiologist who correctly diagnosed me was a woman