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?

Jesus OP what a horrible situation you’re both in. How old are you both? Are you able to work an extra couple of years to make the money back? Not that you should have to, but if I had the money sat there, I’d be using it.

Im sorry you’re having to deal with this.

My friends partner waited three years, died three days before his heart operation. Go private op. Do not wait.

Then go to the bloody papers & kick off.

Is there not a consultant you can pay to see more quickly who can then push him up the NHS list?

My son had his heart ablation 2 years ago. He had to wait until his heart was big enough to safely operate on and so we waited 5 years. I know the circumstances are different to your husband. However my point is the cardiology team should assess your husband's health sufficiently, and if they think a year away is suitable then why do you think it's not close enough?

If you still aren't happy then you'll need to fight his corner to have the surgery expedited.

I wish him the best. The day my son had his surgery was life changing for us and I hope it all goes smoothly for your husband too.

It sucks OP but it’s not worth standing on principle when it comes to health. If you have the money I’d go private. We had to do the same for an op for our baby last year as we were left to wait indefinitely on the NHS.

Have you spoken to the British Heart Foundation helpline? They may be of use. Or there is a heart failure charity - Pumping Marvellous. Does your DH not have access to cardiac nurses - community based team?

He needs to see the GP again - a different one - and also escalate it with his consultant. Is he also under the community heart failure team as they could help too?
It sounds a dreadful situation but I think it requires you to get noisy about it. I’m not sure, but is this something that PALs could help with too?

Why does he need to see another GP? What do you think another GP can do? They can’t override waiting lists, and expedite letters are rarely worth the paper they’re written on as the consultant will dictate his or her list and urgency.

Don’t add to a GPs workload with unnecessary and futile work, please.

It’s shit I know OP and I sympathise. All you can do is be a squeaky wheel with the cardiology secretaries.

My BIL has had a pacemaker then ablation procedures. He had to wait over 6 months after having the pacemaker fitted before the surgeon would perform the ablation as it takes that length of time for the pacemaker to settle.
Are you sure this isn’t the reason why your DH has to wait for the second procedure?

Thank you. If needs be we will have to use our house to fund care later. Neither of us are in a fit state to work. He became epileptic last year at 72 on top of having multiple heart problems and I have rheumatoid arthritis at 67 that puts me on crutches from time to time and won't let me do too much physically. 4 hours on my feet is my maximum in 24 hours.

We are trying. The consultant who did his pacemaker is in charge of the NHS waiting list. He wrote to him today. But he told us it would be 6 months max 3 months ago, he doesn't even know his own wait list!

However my point is the cardiology team should assess your husband's health sufficiently, and if they think a year away is suitable then why do you think it's not close enough?

He is getting more and more ill and nobody is monitoring him.

I'm sorry to hear that.

We have agreed tonight that is he is not scheduled to be done early in the new year we will pay for it to be done in January. We're chasing both, the NHS and trying to find the cheapest reputable place we can get the ablation done. I've told him I will drive him anywhere and since he speaks French and we are near an airport that he should also consider France.

No, he is not being actively monitored for the flutter at all.

We're pursuing all escalated paths as of today.

The surgeon who fitted his pacemaker wanted to schedule the ablation for a month later but we told him we couldn't afford it and asked to go on his NHS waiting list. He told us 6 months max and we were OK waiting that length of time but he's getting so much worse we're worried he will be disabled or even die before he gets to September.

The top half of his heart is permanently in a 350 beats a minute flutter.

Some NHS districts have longer / shorter wait times than others. Is there a way of travelling elsewhere in the uk for it?
My BIL had heart surgery in Leicester, a long way from home because his cardiologist referred him there.

I've told him to go anywhere. Leeds would be doable and the last time I checked the wait list there was very short comparatively.

Have you considered "right to choose"? Just because your trust is 1 years to wait, you may be able to choose another trust with short waiting time.

Google the nhs right to choose pathway. I wish you all the best

DH was put on the waiting list for a second ablation just over 2 months ago and was told it's about a 12 month wait. The 1st one appeared to work initially, but 3 years later he keeps getting episodes of AF again and is back on medication. DH is 61, and it's a bit of a worry that we're back here again so soon after the last one.

It's horribly frustrating but the Consultant told us to stick to the NHS as the type of ablation he needs isn't available in many private hospitals. He sees the Consultant as a private patient to avoid the waiting lists and then the Consultant sidesteps him onto the NHS lists.

Right, first of all calm down, take a breath. Dont bother your GP, won’t make an ounce of difference.

calmly and clearly bullet point your main points of concern:

• no current monitoring from the acute trust nor in the community from the heart failure team. All cardiac units should have a designated heart failure nurse.
• no clear timescale for surgery (though cardiology and cardiac surgery is notoriously difficult to plan electively due to the number of emergencies that can occur and the wait is genuinely long even for urgent patients)
• detail of current symptoms and any that have deteriorated since referral
• etc.

then email the trust that you are under’s PALs team, ask it to be sent to the consultant you’re under, cardiac clinical director and the directorate manager for that service and ask for:

• confirmation that you are on the inpatient waiting list and date added to list.
• your husbands current RTT waiting time
• current wait from referral to treatment on average
• your husbands clinic priority scoring (p1 is emergency, p2 urgent, p3 routine p4 can wait) and ask how many more clinically urgent patients are waiting ahead of him.
• ask for clinical review of your husbands care so far (might just be referral and current symptoms) or might be plan of care etc.
• ask for referral for heart failure community team/any monitoring devices they might have (depending on sophistication of the cardiac units)
• ask for an urgent review either telephone appt or face to face to discuss the symptoms and check the clinical priority status
• ask to be added to cancellation/short notice list
• ask to be pre-opped so he can be passed fit for surgery and proceed at short notice without needing to be pre opped at short notice (once passed fit, you are fit for 3 months then need preop assessment again) if he gets preopped and the time scale elapses, ask to be preopped again and stay fit.
• advise if they don’t respond within x time frame, you’ll take the complaint formal.

they should respond informally in a matter of days. If not, contact the complaints team and put a formal complaint in. The CD and manager (and hospital) would rather respond to an informal concern quickly to resolve the issue than have a formal complaint raised as the numbers are logged, a formal investigation ensues and they have to follow a rigorous response time scale and it’s a pain in the rear.
if you go formal and don’t get anywhere, you can raise with your MP/ICB.

if offered a date for surgery accept it, if you decline 2 dates with reasonable notice (2 weeks usually) you can be discharged back to gp to start all over again.

if symptoms worsen and you’re concerned, go to urgent treatment centre.

consultants often don’t know the ins and outs of their waiting list - they don’t want to be the bearer of bad news to patients, or sometimes they genuinely think it’s is 6m for example because for most patients it is, but for a few it’s longer (averages etc)

best of luck!

Thank you so much!

I'm sorry you are in this boat too. His sister has terrible Afib and needs a very peculiar ablation at the bottom of a lung! The whole family have dicky hearts. We are just hoping against hope that this will work first time. I hope your DH is OK.

If you can afford it - go private. If not - get on to the consultants secretary to see if you can be bought forward in the queue or get a cancellation.

Its pointless hassling your GP - they cant get you any further up the consultants list. All they can do is refer him - if they refer him as urgent and the consultant looks at the info and deems him as routine the GP cant do anything about it. Speak to the consultants secretary.

Nuffield offer interest free medical loans, you pay over 1 or 2 years I think, I can't believe how much it costs, if he is unwell and symptomatic with his flutter and hf would it be better to go to urgent care.