Went to GP early March 2019 with breathlessness. Did not get an echocardiogram done until 28 May. Referred to hospital with severe LA dilatation. Had to wait until today 2 July to ring them for an appointment only to be told it would be in the New Year! (2020). My brother died 4 years ago with severe cardiomyopathy only 4 months after diagnosis. What do I do to help myself?
Thanks for reading this....Vibia
Are you able to go private?
I would rather not although it's tempting
If PALS doesn't seem able to speed things for you, private may be the best option - you'll be referred back to the NHS once the private consultant determines the problem.
The diagnostic tests can quickly add to the cost. Perhaps the optimum time to jump back to the NHS is when you are confident of the treatment plan. If self-funding you should discuss this early with your consultant so they know you wish to transfer to their NHS list ASAP.
I think you meant this reply for Vibia
Hi, I’m sorry to hear of the challenges you’re facing. Have you spoken with your GP to see if they can refer you to another consultant with a shorter waiting list or contact the consultant you have now to explain your family background?
All the best.
I was in a similar situation. Diagnosed with HF in late summer 2017, I was still going through diagnostic tests (one at a time) to determine the cause in March 2018 at which point I decided to make use of the private medical insurance I had available to me. Going this route will save on waiting lists but having the tests and analysing results still takes time. It will, however, get you to the start of appropriate treatment more quickly. Then you will have delays again because it will take time to determine whether a treatment is working.
The cost of any tests - and, of course, treatment - may be high compared to the cost of a consultation. (Caveat emptor.)
If using insurance, any claim will not be for a condition but for a consultation (or other expense) so you will have to pay an excess and lose some No Claim Bonus in every year you submit a claim (I’m on my 3rd year now). Be prepared for premiums to increase.
Despite the above, you may still think that any acceleration of your journey is worth the cost. It’s not an easy decision.
I'm sorry you are going through this.
I hope you get the appropriate treatment in a timely manner.
I was diagnosed with AF after an electrocardiogram at my GP surgery in April last year, but was going to have to wait 4 months for an echocardiogram. Meanwhile, just told to take 75mg aspirin. Got a private consultation with a Cardiologist at the local hospital within a week for about £200. He immediately prescribed Apixaban and Bisoprolol and wrote to my GP. Echocardiogram subsequently showed a clot in my heart which could have moved and caused a stroke, but the Apixaban soon got rid of that. Once you've seen a consultant who also works in the NHS, s/he will get you into the NHS system and, once in, I've found them excellent (Musgrove in Taunton). A cardioversion corrected my AF and I've had several electro and echo CG's and a CT scan since. Now due for an angiogram and possible stent which they'll do at the same time if needed.
I agree that going for the initial private option is the way to go here. Luckily the cost of an echocardiagram in the UK private sector to give a real steer on the how quickly you need to act is quite easy to research on the internet. Many medical insurers give info on procedures cost. Also an echocardiagram is significantly cheaper than say a CT coronary scan which is what you could go for as a next step with chest pains/angina. I would still recommend anyone with risks in that area and unable to get NHS review quickly to do so.
Yes true that many people using private health are encouraged to go straight past the CT scan stage to an angiogram as an angiogram will be needed on top (unless the CT shows no real issues), but had I known at age 50 what I found out at age 68 3 weeks ago - that a paid-for CT Coronary scan is very capable of giving an initial good image on the health of your heart - I would have done so even in the absence of risk factors.
My private cardio had opined that I ticked only one of the risk factors and was confident A CT coronary scan would tell him that he could treat my stable angina with drugs. He was shocked when he got the scan back telling me I was a likely heart bypass risk. Had a triple bypass 6 days ago.
I am shocked that the NHS has the types of delay for evaluation that is reported on this thread. Even more so I am disgusted by Tory party cuts and now the criminal suggestion by Boris that the nation needs to get a tax cut/bribe. Truly and horribly disgusting and I was a Conservative voter for most of my life. Stop giving me hand outs Boris, I and my like don't need them!
Agree. But we simply shouldn't have to do this to get into the system. What the Tories have done to our NHS in the last 10 years is truly disgusting. I'm lucky to have a spare few quid, but a hell of a lot of people simply haven't.
Are you still on apixiban and if yes, do you know the comparison to warfarin?
Yes. I think I was lucky to have this immediately prescribed by the consultant I saw privately. It's newer and much more expensive than Warfarin (rat poison) that I'm sure my GP would have prescribed. You need fewer regular blood tests with it. I started with a one week private prescription which cost me about £25, but now continue with it on the NHS. After 16 months I've had no side effects as far as I'm aware apart from a very occasional nose bleed, but I'm sure you'd be more prone to those with Warfarin too.
My father in law was prescribed abixiban after a dvt, because he is very immobile the gp has advised that he stay on it as he sits for long periods, in fact most of his waking day, however she did give him the option of coming off it as if you have a heavy bleed there is no way to stop it, in other words you could bleed to death. Whereas with warfarin they can stop it. I think that is worth a mention as not many people are aware of it.
PUSH .. .tell your gp that's not acceptable you have a family history regarding heart problem you need to be seen in a more acceptable time frame love .. all referrals to hospital to see consulants ect have to be reach in a time frame set out by the government and 2020 well out of this
Don't despair. All is not lost. I was breathless after climbing 2 flights of stairs so went and got it checked out using Bupa.
Standard ECG showed typical cardiomyopathy. Echo cardiogram done on the same day (Bupa) backed up the result. 2 months later a CT scan with dye showed ...... nothing.... was switched to NHS as the Bupa did not cover a Cardo MRI. 3 months later got a cardio MRI. 2 months later was told confirmed cardiomyopathy. Was put on Bisoprolol 5 mg. and given a 24hr Dopler heart monitor which I am still waiting on the results.
The consultant said it was in the early stages and my or may not develop into something worse. The Bisoprolol certainly helped with the short of breath. Next move is to reduce the weight ( 15 st .... need to go to 12). Forget weight lifting at the gym. Still do 40 min on the crosstrainer and 30 min on the spin cycle. and was told to keep it up.
If the heart electrical signals are messed up due to a 21mm wall thickness as opposed to a 15 mm then I will wind up with a pacemaker or a implantable defib.
In short.... you are at the start of a years check out before they decide what to do next. The good thing is you have discovered a problem and this can be managed.
Good luck.... we all need it....
Have you asked the question could I have it done quicker at another hospital?
Time I think to go to your GP and jump up and down and scream a bit. Get him to get a quicker appointment. Don't take no for an answer. Those who shout loudest......
Have you told the consultants secretary that you would take a cancellation at short notice? Even if you decide to go private you could still be registered for a cancellation and see which one comes up first.
Aortic valve replacement
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