Awaiting replacement for too long..

[Laurah876]

Hi all, I'm new here but have been reading these forums for a while now. I am in the UK and still have not even had a letter confirming a surgery date 5 months after being told that my condition was severe. I understand the situation with the NHS at the moment, but feel that 5 months and not even a letter is far too long.

I was diagnosed with AS several years ago, but it has recently become severe. I was told in July that the situation was very serious. I had an angiogram in the summer that revealed that as well as AS, I also have a partially blocked artery. I have called my doctors, cardiologists receptionist etc so many times following up as I'm concerned about the long term damage and fearful every day that I will collapse of sudden cardiac arrest. I'm at my wits end with it and just want it over with.

Does anybody from the UK have any advice on how I can possibly see a different surgeon? Or a way to be referred elsewhere? Just anything that I can do? When I went to my doctor to request she follow up or do something I was told 'You're not the only one waiting' which is just disgusting and so unsympathetic. Unfortunately, I can't afford to go privately for the operation.

Any advice would be appreciated, thanks.

 

[pellicle]

There are a few other pommies here, I'm a wild colonial, so haven't got a clue on that.

@leadville or @LondonAndy may have some input

 

[LondonAndy]

@Laurah876 Hi Laura, and sorry to hear of the frustration. The NHS supposedly has a maximum 18 week wait for treatment for non-urgent cases, so it sounds like you have been waiting about that long. You could try asking your GP to arrange an e-referral and then when the form comes through giving the website details to book, you can apparently see what hospitals have the shortest waiting times.

My surgery was in 2014, and I was so frustrated even then at the length of time between tests to even get a diagnosis. But then one day at home I thought I was having a heart attack, and called an ambulance. Thankfully it wasn't a heart attack, but it did mean the final tests to confirm my need was urgent, and I ended up having the valve surgery a week later.

Do you have shortness of breath? With my aortic stenosis I found I could only walk 200m or so before having to stop and catch my breath. When I saw the surgeon he said I would be dead within 2 years if I didn't have the op, so even though we may think it is urgent it might not be as short a time left as you may worry about now. Good luck!

 

[ValveAdmin]

Hello Laurah and welcome to VR. Thanks for joining and I hope you'll be able to find some answers here.

 

[Laurah876]

@Laurah876 Hi Laura, and sorry to hear of the frustration. The NHS supposedly has a maximum 18 week wait for treatment for non-urgent cases, so it sounds like you have been waiting about that long. You could try asking your GP to arrange an e-referral and then when the form comes through giving the website details to book, you can apparently see what hospitals have the shortest waiting times.

My surgery was in 2014, and I was so frustrated even then at the length of time between tests to even get a diagnosis. But then one day at home I thought I was having a heart attack, and called an ambulance. Thankfully it wasn't a heart attack, but it did mean the final tests to confirm my need was urgent, and I ended up having the valve surgery a week later.

Do you have shortness of breath? With my aortic stenosis I found I could only walk 200m or so before having to stop and catch my breath. When I saw the surgeon he said I would be dead within 2 years if I didn't have the op, so even though we may think it is urgent it might not be as short a time left as you may worry about now. Good luck!

Hi, thank you for responding to me and for your suggestion, I will definaly check out the e-referral. It is very frustrating having to wait especially with no update, it makes you worry you have been forgotten about.

I have shortness of breath if I walk far, plus extreme tiredness and palpations. The op isn't great either and very scary, but it's unfortunately the only option! Just want to get it all out the way really...

 

[Al3x]

Another Brit here. There is no way I know of to speed up waiting lists. It's done on clinical need and the NHS is happy for you to have an extremely low quality of life before you become a priority (I know it's not the fault of the staff). For info, it's about £20k to go private. Luckily I had taken out medical insurance a few years earlier or I too would still be waiting. Diagnoses to surgery in about 4 months. Good luck!

 

[Deepak khanka]

Hi all, I'm new here but have been reading these forums for a while now. I am in the UK and still have not even had a letter confirming a surgery date 5 months after being told that my condition was severe. I understand the situation with the NHS at the moment, but feel that 5 months and not even a letter is far too long.

I was diagnosed with AS several years ago, but it has recently become severe. I was told in July that the situation was very serious. I had an angiogram in the summer that revealed that as well as AS, I also have a partially blocked artery. I have called my doctors, cardiologists receptionist etc so many times following up as I'm concerned about the long term damage and fearful every day that I will collapse of sudden cardiac arrest. I'm at my wits end with it and just want it over with.

Does anybody from the UK have any advice on how I can possibly see a different surgeon? Or a way to be referred elsewhere? Just anything that I can do? When I went to my doctor to request she follow up or do something I was told 'You're not the only one waiting' which is just disgusting and so unsympathetic. Unfortunately, I can't afford to go privately for the operation.

Any advice would be appreciated, thanks.

Hi Laura
I am also waiting for the surgery date. Do you know when did your MDT happen. MDT is when the surgeons meet with their colleagues to have a plan of action for carrying out the surgery. Which hospital are you with ? And who is your surgeon may I ask if you don’t mind sharing
Thanks
Deepak

 

[cebolla59]

Hi all, I'm new here but have been reading these forums for a while now. I am in the UK and still have not even had a letter confirming a surgery date 5 months after being told that my condition was severe. I understand the situation with the NHS at the moment, but feel that 5 months and not even a letter is far too long.

I was diagnosed with AS several years ago, but it has recently become severe. I was told in July that the situation was very serious. I had an angiogram in the summer that revealed that as well as AS, I also have a partially blocked artery. I have called my doctors, cardiologists receptionist etc so many times following up as I'm concerned about the long term damage and fearful every day that I will collapse of sudden cardiac arrest. I'm at my wits end with it and just want it over with.

Does anybody from the UK have any advice on how I can possibly see a different surgeon? Or a way to be referred elsewhere? Just anything that I can do? When I went to my doctor to request she follow up or do something I was told 'You're not the only one waiting' which is just disgusting and so unsympathetic. Unfortunately, I can't afford to go privately for the operation.

Any advice would be appreciated, thanks.

I am awaiting an AV redo which is fairly imminent. It might be worth just going private for a consultation with your surgeon of choice who should at least then be able to put you on their list. Depending on the urgency that might also help further accelerate the waiting time from there.

 

[vitdoc]

There are a variety of ways one can depart with severe AS. The obvious is heart failure that becomes more intractable as the stenosis worsens and time passes. The second is sudden ventricular arrhythmia. When I was scheduled for my first valve replacement in 1977 I still felt pretty good. So I continued to play basketball. One night I fainted during a game. I figured I should stop playing until the surgery. I ran into the cardiologist in the hospital where I was working and I mentioned what had happened. He was very worried about potentially more arrhythmias and he moved up my surgery from several months to two weeks.
These stories are what make Americans wary of various health systems around the world. Our problem is poor coverage which is bad. But access to quick healthcare for those insured is excellent. Still waiting for the ideal system.

 

[LondonAndy]

There are a variety of ways one can depart with severe AS. The obvious is heart failure that becomes more intractable as the stenosis worsens and time passes. The second is sudden ventricular arrhythmia. When I was scheduled for my first valve replacement in 1977 I still felt pretty good. So I continued to play basketball. One night I fainted during a game. I figured I should stop playing until the surgery. I ran into the cardiologist in the hospital where I was working and I mentioned what had happened. He was very worried about potentially more arrhythmias and he moved up my surgery from several months to two weeks.
These stories are what make Americans wary of various health systems around the world. Our problem is poor coverage which is bad. But access to quick healthcare for those insured is excellent. Still waiting for the ideal system.

Here in the UK my experience was similar, Vitdoc. After long delays between tests for a diagnosis, experiencing quite severe stenosis, I had a "cardiac event" (I think one step short of a heart attack), called an ambulance and my valve.was done 7 days later.

 

[tom in MO]

People who wait in the UK say there is nothing they can do and it's not the Doctors, Nurses, etc. fault. That's a shame. Please realize it is the medical establishment...i.e. Doctors, Nurses, Administrators, etc. who are at fault. They make the decision to prioritize the health of Covid patients over heart valve patients. Plus surgical teams are "teams" they need to work together to stay competent.

However, as testimony on this forum indicates, the NHS has had a problem with capacity pre-Covid. The same people have decided to limit capacity to an unhealthy extent. The NHS clients should contact the media and begin a political action. Valve replacement surgery is essential for life. Once you NHS patients get your valve replaced, you should begin the fight for the right to speedy surgery for those still in the waiting room.