Need support, NHS letting my husband go into heart failure.

[Imdunfer]

Just writing for support, feeling very down tonight.

DH has been on the waiting list for an ablation for 13 weeks, after paying £20+k for a pacemaker 3 months ago because he was in heart failure. PLEASE don't misunderstand me, we are well aware that we are lucky to have been able to afford it but it was money saved to safeguard our future care needs, not to do basic NHS stuff that mean he could die by the time he reaches the top of the waiting list.

Today he asked his GP to try to get him up the list because he has new signs of heart failure from flutter that is causing the top half of his heart to beat at over 300 beats a minute. It's overworked, basically. He already has a mechanical aortic valve, he's very high risk with that. The GP told him he can't see hospital records and sent him away to try and find out how long the wait will be for himself.

That process was another whole story, but finally he has found out that he is scheduled for an ablation in September next year, a whole year after going on the waiting list.

If we wait that long his heart could be permanently damaged and ruin the quality of the rest of his life (our lives, I am so not fit to be a carer). There is a good chance he could have a heart attack and die.

So it looks like we're going to have to dig another £30k out of our future security and pay for the ablation, which is quite likely not to work first time and need to be repeated, which we will also have to pay for.

We've paid all our lives into the health service and it's abandoned us in our old age.

Can anyone suggest what else we can do? Or just offer a caring word or two?

Email has already gone to the consultant but we will probably have to go private. Thank heavens we can take it from our savings. I know how lucky we are to have had the money, but we have between us paid approaching £50k in the last 2 years to do things that should have been done on the NHS that were seriously affecting our quality of life and/or life threatening.

We got the date for the initial appointment to prepare for his prostatectomy in August. It was done privately over a year and a half earlier.

I am absolutely terrified by getting older with the NHS like this.

He's unwell in that he's coughing constantly and can't walk up hills, not unwell in an A&E sense. But this strain on his overworking heart, (which is already compromised with a mechanical aortic heart valve and also won't beat fast enough and stops completely for 30 seconds at a time at night without a pacemaker), could turn him into a proper invalid long before he needs to be one.

Thanks for the loan suggestion, but we were big savers all our lives and we also own the house so we can, if we are forced to, release equity on it.

It's a huge shock to reach our old age and have the NHS on such a state.

All the NHS workers, I have nothing but admiration for how you are slugging away trying to do the right thing for your patient when everything is against you being able to get treatment for them. *
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*with the exception of the resident doctors who are striking in flu season before Christmas. My contempt for you, the deaths you are causing and the mental anguish of people waiting for treatment that you are responsible for, knows no bounds.

I am a HCP who specialises in pacemakers, his atria beating at 300bpm isn’t much of a concern to be honest, the main issue is that it puts him at a higher risk of strokes (I assume he is on blood thinners for the mechanical valve), most people live with AF for many years without problems.

The issue is when the bottom chambers beat too quickly because of the AF, and that is what causes heart failure. This will be monitored via his pacemaker though, does he have issues with his heart beating too quickly?

If not then, the ablation won’t really be a priority on the NHS (the NHS tend to only offer ablations when patients have symptomatic fast heart rates which cannot be treated via medication) so you may be better going private if that’s not the case.

He has two heart consultants who both say he needs an ablation. And increasing signs that his his heart is not delivering enough oxygen (signs we know well from the aortic valve failure). His heart beats too slowly, bradychardia, not too fast, hence the pacemaker. Except the top which is now in 5x flutter 100% of the time. He's very tired, and that also impacts both our lives as when he is tired he's unable to manage the CBT that he uses to control the auras he gets from having become epileptic last year and the irritation and depression caused by the anti epilepsy drugs. Oh, and he's autistic, hates being in a situation he can't control, and it's triggered by medical appointments. It's a shitshow, it really is.

We are reconciled this morning to digging out the savings.

Hi,
Is he under a cardiologist as well as an electrophysiologist? I’d be contacting both, the first for an emergency medication review appointment to help manage things pre-op, the second for an emergency OPA to discuss the changes in his presentation and ask if he can be considered for emergency surgery.
If he’s not under both I’d ask GP to refer urgently.
id also consider attending A&E with the fibrillation- it’s quite possible they would admit with a situation as you describe and he may have the ablation as an emergency procedure.

Years of underfunding, understaffed, Brecit, covid, lack of social care all contribute to the long waiting lists, sometimes people have to strike to improve conditions, there's never a good time. Perhaps nhs doctors should not be allowed to work in both private practice and the NHS

AF can make you feel more tired as the heart pumping function is reduced somewhat due to the atria not working properly, however, be assured that AF (unless it is causing fast heart rates) will not cause heart failure on it’s own.

I can’t say for sure, but I don’t believe based on what you’ve said he will be seen as a priority in the NHS, patients who are a priority are typically those having hospital admissions due to acute heart failure, chest pain and and/or loss of consciousness due to rapid heart rates, and even then they can be waiting months for an ablation, I believe your best bet is going private.

As an aside, if you do go private make sure the hospital has ICU/ITU facilities if there are complications. We only found that DH had AF when he was having a hernia repair under GA at the local Winfield hospital and the anaesthetist had issues with his heart.... he ended up being shunted into an ambulance and driven 4 miles to the local county hospital. It was terrifying, and mainly why he hasn't had an ablation done privately as no private hospitals round us offer this. Do your research well. You may end up needing to look towards London.

Are very lucky, we have two quite close with intensive care units. We live near Manchester. He had his heart valve replaced in one and the pacemaker fitted on the other, but thanks for the warning, it is a risk

He has a cardiac consultant, a cardiac consultant surgeon (2 actually, another one monitors a rising aortic aneurysm). and an electrophysiologist (who is fab!)

We are waiting for the surgeon who wants to do it to respond and then we'll find somewhere private in January or February

Thank you everybody for your support.

The thing about them doing private work is that it’s in their own time. You can’t dictate what people do in their own time, lots of people have two jobs should we ban that for everyone?

I wish you luck, OP, it's so draining to have this running in the background all the time. I'm having to stifle a scream a lot of the time as DH is tired when he's had a run of AF, and also the medication is slowing him down. I feel I'm carrying all the load - so you have my empathy. Look after yourself as well as him.

A decent cardiologist won’t charge anywhere near that amount of money and would have done the ablation at the same time as the implant! I can recommend 2 fantastic ones if you’d like?

Dr Fox is a top cardiologist and we have just paid £20k for a pacemaker and he says it will cost more for the ablation. The hospital fees are enormous and include cover for it going wrong and ending in ICU, it's not just the cardiologist.

They don't do both together at least partly because there's more than half a chance in my husband's case that the pacemaker would remove the need for the ablation. Everyone is disappointed that it didn't.

I'd welcome suggestions that are travellable from Manchester.

I am sorry. Someone I know was in exactly the same position and waited well over a year for the procedure. All the time being told he could die any moment. Horrendous. He did make his operation date but spent a year terrified.

the only thing I can think to ask about is if anywhere else has shorter waiting lists.

I really feel for you. Rest assured that I understand completely how much tiredness and preoccupation with illness can present very, very like dementia. But they're walking and talking well when enervated by being out of the home, so nobody realises what we are supporting. I'll think of you next time I have to scream silently so as not to upset him. It's not his fault, he doesn't want this any more than I do. Thanks for your post.

I don't know how much of this you know already, but here's my understanding of processes. They don't usually give you ablation as a standard treatment for Atrial Fibrillation (afib). First, they give you a collection of different drugs for afib and, if the rhythm doesn't correct itself, then the docs do cardioversion, an electric shock reset of the heart rhythm. Ablation is usually done to correct blockages, they effectively burn out the blockage with a hot/cold wire. Sometimes a clot causes abnormal rhythms, but if that was the case, the patient usually has a heart attack and the ablation is done in hospital pretty quickly, before they're discharged.

As far as I know, there is no real treatment for heart failure, they just usually give you more drugs, such as beta blockers, to lower the heart rate and take some of the strain off the heart. The only treatment for heart failure is a transplant, but that's not usually an option for most people.

Yes, heart failure sounds terrifying, and fatal, but there are plenty of people living with a 'heart failure' diagnosis. Think of it more as 'heart struggling', as opposed to 'heart ending'. Valve replacement is a pretty safe procedure- they do hundreds of these operations every year. valves get floppy, bow, or don't close properly because of structural issues with the heart or connective tissue and if the valve doesn't close properly it can cause regurgitation and sometimes cause heart attack.

When a pacemaker is fitted to fix afib, they usually do an ablation first. In this instance ablation is not a clot buster, but a way to 'knock out' the hearts computer, and then fitting the pacemaker is like installing a new data chip. The pacemaker doesn't stop the afib, the heart still beats irregularly, but the heart's 'computer' section gets its readings from the pacemaker box instead of the natural computer, which the ablation overrides (hope that makes sense).

if the pacemaker is fitted to control bradycardia, a slow heartbeat, then it doesn't touch the afib, unless its a specific 'mode-switching' dynamic pacemaker. With these, if the heart beats too slow, you get a buzz, too fast, you get a buzz. You still have the slow and fast abnormal rhythms, and you can feel fluttering and such, but the machine does it job and stops problems occurring.

About 51% of patients recover in 3 months from ablation/pacemaker install for afib, so that suggests 49% of people don't recover within three months. The people who don't recover within that 'gold standard' 3 months are people who have other heart issues, and it sounds like with the heart failure, valve issues, and such, your man has a complicated issue and therefore probably a more complicated recovery.

Cardioversion can be done with a pacemaker, to try to fix the afib, but it makes it all much more complicated than just a quick wham with the paddles. Same too, with another ablation for afib with a pacemaker. It can occasionally cause the pacemaker to malfunction, which means more operations and procedures, more recovery, more risks, etc. Sometimes infection causes afib, sometimes a struggling heart just goes a bit haywire and then fixes itself. Sometimes going in and fixing things causes more issues.

When you're sitting there hearing about heart operations, failures, afib at 350 bpm, etc, it's all bloody scary and sounds massively serious, which it is, but the cardiac teams in the NHS are actually quite good.

Like heart failure, people live with afib, too. If it's been beating crazily for longer than a few weeks, it's treated, mainly because of the elevated stroke risk. Presumably your man is on blood thinners, that lessens the risk massively. If there are no other 'danger symptoms', with the afib, such as serious breathlessness, severe chest pains, dizziness, fainting, etc, they tend to treat things 'conservatively'. And that sometimes feels like they're not doing anything, and the places your mind goes are horrible places to visit.

My husband has Marfan's syndrome. His heart is wrecked. The rest of him, on paper, seems pretty buggered too. But, he's out at work every day, he's had all kinds of scary heart issues and procedures and he's still here. He received all his care in Liverpool heart and chest hospital: they are brilliant. The best in the country, apparently.

If your man is having any scary symptoms, severe chest pains, serious breathlessness, fainting, dizziness, then take him to A and E. They'll run tests, maybe bump him up the list if that's needed. But it might just be he needs to wait. I hope some of this helps a little.

Thanks for the long answer but he doesn't have atrial fibrillation, he has atrial flutter.

The top half and bottom half of his heart beats out of synch, the top beats 5 times for every time the top half does. My limited understand is that makes it inefficient at picking up oxygen from his lungs. Without a pacemaker, the bottom half of his heart is in bradychardia not tachycardia.

Two consultants have said an ablation is required and will fix it (not necessarily at the first attempt) and one was fired up to do it in September but we told him we couldn't afford it so he put us on his NHS list.

He is getting dizzy spells, GP is checking him out next week. Then we'll pay if the NHS doesn't make him priority but as he can still walk several miles if he paces himself, we don't really have any realistic hope of that.

I'm so sorry to hear about your husband's Marfans, I have a friend with that and it's a dreadful disease. We did wonder at one stage about my husband since he's tall and had the typical bicuspid aortic valve, but thankfully not. He just has a heart they made on Friday afternoon.

The only way to jump the queue is to go private. Everyone else on the list will be equally desperate for their operations to be as soon as possible. And inevitably more urgent cases will be prioritised as well so your place in the queue may go backwards. If you have the money just pay.

Does the pacemaker not control the fast heart rate?

Go and see your MP

That won't be happening. The NHS is on its knees. Trying to get my husband to jump other people on the queue whose medical needs are greater by using our MP just wouldn't be right. If the doctors say he needs it more than other people, that will be great, but otherwise if the main purpose is for our peace of mind and to keep our country walks, then were just going to have to suck it up, pay, and thank our lucky stars that we have it.

The pacemaker makes the bottom half of his heart beat at 70 a minute (that's just been adjusted up from 50 to try to give him more oxygen. He has a naturally low heart rate. ) The top half of his heart beats 5 times for every one beat of the pacemaker. It used to do that some of the time. By August it was 70% of the time. Now it's 100% of the time, so at least it can't get any worse!

Who was the surgeon?

I have experience with Simon sporton and malcolm findlay. Both absolutely excellent.
I was a very complicated and unusual case.

I'd strongly recommend a private consultation for a second opinion there may well be medication combos which can control his HR in the interim.

You can also self refer to those guys via the nhs (Simon and malcolm are my nhs as well as my private Drs)

Also Barts waitlist for ablation is under a year (it was 6 month about 6 months ago) and st barts have an FPA machine now (latest ablation tech)

Thank you will look at St Barts, London is easily doable, we're close to WC mainline. My SiL is with that team for a very rare AF originating at the bottom of a lung!

We are very reluctant to add extra drugs, we already know that there is an interaction between his heart and his epilepsy and the first epilepsy drug tried caused horrendous low blood pressure problems and the pacemaker caused seizures until the epilepsy dose was raised. His two consultants are well regarded, Fox and Williams, and neither are suggesting a drug solution, I think it's a pure electrical problem.