How long are people waiting?

[Gwindra]

My husband is on the waiting list for a bypass and the wait is agonising, and I’m astounded how long he is waiting… 28 weeks now. Is this the same everywhere? Spoken to the secretary on multiple occasions, been through PALS twice but still no date. Frightening times.

[Lowerfield_no_more]

Your situation is certainly not one which will be uncommon. Unfortunately it is down to the post code lottery that is now defining treatment and procedures, and so will be governed by where you are. Not helped by the pandemic backlog and staff employment disputes. Also whether the procedure is down as urgent or routine. All I can suggest, if you have not already done so, is for you to advise your hospital that you are willing to take cancellations. And you could also talk to the appointments team to find out their current expectation for the procedure to take place. I hope you both get sorted soonest.

[Gwindra in reply to Lowerfield_no_more]

He’s said yes to cancellations, spoken to the secretary on numerous occasions but all she can say is the earliest it might be…. Which gets further away every time! So hard.

[Blackcatsooty]

Dear Gwindra

Waiting was by far the worst part of my cardiac event. I didn’t grasp how bad my situation was, just weeks left to survive. And, under the worst possible circumstances , covid closed hospitals, I was seen and operated in just a couple of weeks. I live in deepest rural Essex and was sent to West London for the op. My message is that things happen very fast when it is essential. My cardiologist rang me from her home on a Sunday. Can’t really ask for anything faster.

I do hope your wait ends soon. And the op goes well

Sooty

[Lydia_1]

I feel your pain my uncle originally was 8 weeks, but we delayed it due to commitments. The hospital was amazing, hold tight and you can always call the surgeons secretary that’s what helped us

[Gwindra]

We’ve spoken to her several times but each time a possible date gets further and further away.

[Chickenlou]

My fiancé was told he needed a bypass in September 2019 and had the surgery in late January 2020 (approx 20 weeks)

He was initially down as routine but in late December he was moved up to urgent (as condition worsened) and then had the surgery within a month at a private hospital.

[looseylaw]

I had my heart attack in October and needed a bypass. I was told if i went home i would be put on a waiting list, which was in excess of 6 months. Going home was not an option.

[Gwindra in reply to looseylaw]

Thankfully he hasn’t had a heart attack but it’s what we dread.

[Jazz100 in reply to looseylaw]

That is exactly what happened to my hubby. He was told not to go home. That was hard as he was in hospital for almost 5 weeks.

[Beamgirl]

I waited 6 months for my bypass, then chased and chased as initially told I was urgent. After finally getting a reply, the surgeon apologised and stated he hadn't realised how much of a covid back log there was and is treating Emergency heart attack patients for the foreseeable. So, if I wanted surgery to save my life, I had to either become that heart attack victim, hence cashing in my life savings, pensions and a loan as had no option but to get it done privately.

And now, no one seems to help me in post via nhs because they think I am loaded and can pay for my care with everything else!

All these years of pay my NI to get this.

But, I am alive

[Sljp0000]

How bad are your husbands pains? If he is getting worse keep ringing and telling them. Tell them you are worried for his safety. You do need to make a fuss if you're afraid.If he's not getting worse I guess its good news that they think it's routine enough to wait. Do you know how what percentage his arteries are blocked?

Sorry you're both going through this, it's a horrible time.

Susie

[Gwindra in reply to Sljp0000]

It’s a long old story (aren’t they all!) but in a nutshell… about 5 years ago he went to see GP with pretty vague symptoms. He thought he was developing asthma as got out of breath quickly sometimes and thought his general fitness levels were dropping with age. Ended up in chest pain clinic, discovered he had familial hypercholesterolaemia and a cholesterols of 9.5, had an angiogram showing his RCA occluded in mid segment (collaterals feeding it from right side which means it had been blocked for some time), and had a stent put in his left side. Was meant to have regular review but Covid happened and in fairness he’d been pretty good. End of last year his vague symptoms were back, spoke to cardiologist and got booked in for repeat angio, then discussed and referred for bypass. He manages his symptoms to the point he doesn’t really get chest pain because he knows what makes him feel rough (and I think he’s done that, unknowingly, for years). Apparently his echo shows good heart function. Letter from angio says LAD has ‘moderate diffuse disease proximal to diagonal branch and further disease to distal diagonal’. FFR 0.78, LAD lesion functionally significant. So not entirely sure if any of that says a percentage of blockage. When we went to see the consultant it turned out to be his registrar and maybe we didn’t ask enough questions. Our understanding is that because the right side is occluded, it’s even more important to preserve the left side as it’s feeding the right. I don’t know how bad he is compared to others. I worry that because all his symptoms are pretty vague that it’s not being thought of as too serious! Sorry, very long winded.

[devonian186]

If he is told to wait patiently is it a single or double bypass? If more than that I would expect your husband would be an inpatient. Its best to be an inpatient then they can't forget someone and push them down the list.

[Gwindra in reply to devonian186]

The registrar we saw said until they went in they wouldn’t know how many he needed

[devonian186 in reply to Gwindra]

That complicates things. They must have some idea, as the need for action for someone with one bypass is going to be very different to someone needing a quad bypass, which I had.

I went in to our local hospital after I phoned my Gp and she arranged an assessment. They did various tests and kept me in as an inpatient .

They thought it might be a triple but decided on the day to make it four as the last one was quite gummed up. I can only assume they expect your husband to be at the lower end of the range but somewhere there should be the results of the tests he has had which might give you a better idea as to what is intended.

I would try and get hold of the notes although in 6 months things might have changed. If things have got worse then action is needed which might include new tests. Don't delay, Unfortunately its those that shout loudest that get attention and at the very least you need to know if you need to start shouting or not.

[Unicycle]

During an angiogram on the 3rd December last year, I was told I had badly diseased arteries and needed a triple bypass operation. I was also told this would likely be done in around 3 months.

I eventually saw the surgeon after 4 months who told me there was a further 4 to 5 month waiting list for the operation. It was around this point that I developed significant chest pain whilst sleeping and resting and had the magnificent experience of spending 23 hours in A &E sitting on a metal chair - eventually discharged , prescribed beta blockers and told to come back if experiencing further incidents.

At this point , facing the prospect of further visits to A& E and / or having a hear attack or stroke, I explored the private surgery option.

I saw the private surgeon within two weeks of referral and the operation was offered in three weeks. I was also told to restrict some of my physical activities due to the risk of a heart attack or stroke.

I managed to scrape together £22,000 and paid for the operation, which took place at the end of May.

The icing on the cake was that as I was leaving the house to have the operation , I had a phone call from the NHS to say they had a cancellation and could do the operation in 5 days time. I went ahead with the private operation as I had already paid, it was taking place the following morning and I couldn’t ascertain if the NHS offer could still be cancelled due to an emergency admission.

I am now slowly recovering from the operation and hoping for a full recovery, although doing this whilst managing caring responsibilities , peripheral neuropathy, sleep apnoea and diabetes is not exactly a barrel of laughs.

I post this in the knowledge that some people may not be able to raise the money for a private operation, but also to highlight the fact that you may be offered the NHS operation quicker than you think, and remember there is a process of risk assessment in prioritising the waiting list.

Also, as Chickenlou points out, if you are in England, the NHS may pay for the private operation if things badly deteriorate. Unfortunately I live in Wales where, despite higher levels of funding from the UK government, we have a poorer , less flexible health provision.

I hope it all goes well for your husband and my advice is to try and focus on being as fit and healthy as possible whilst waiting for the operation. I was putting myself at risk through over strenuous activities and had to tone them down but tried to walk 3 km a day which helped reduce my anxiety and made post op recovery quicker. You need to take medical advice re physical activity but it is one thing you can do that is under your control.

Good luck.

[Gwindra in reply to Unicycle]

I thought having it done privately would be even more expensive than that. If we could just be told a realistic idea of when it might be done it would help. But we just keep being told it won’t be before June, then it was July, then maybe the end of August ( but I emailed the secretary last week for an update and haven’t had a reply. I’m guessing the end of this month will have moved to September or October by now).

[Unicycle in reply to Gwindra]

I also though it would have been more but they will use your NHS scans etc which reduce the overall cost. Also, the surgeon completed the triple bypass without stopping my heart and putting me on a bypass machine, which reduced risks if stroke. I was also reviewed by him every day for the 7 days I spent in the hospital where I had a private room with ensuite and very good quality food, which I was eating 3 hours after surgery.

Of course I may now need to de- retire and go back to work for a year or hang on to our 5 year and 10 year old cars for a few more years but that is a small price to pay.

I found it was very easy, when waiting to hear when I could have the op, to slide into a negative mental state and fail to see the many positives in my life, despite my failing health. I can’t emphasise enough the benefits of walking , yoga ( even if you haven’t done it before - with medical approval) and focusing on the things you still have/ can do. Good luck.

[Gwindra in reply to Unicycle]

Thankyou. Yes, I absolutely understand the decline in mental health. I was only just thinking that, and staying focussed on so many positives is easy to forget. Food for thought x

[Beamgirl in reply to Gwindra]

Mine cost £46k. Had to go.into London for the operation

[Starwish in reply to Beamgirl]

WOW why was it so much if you don't mind me asking

[Beamgirl in reply to Starwish]

No idea. Surgeon was £7k anesthetist £2,500 the rest was hospital costs, and that was the worst bit too. Food terrible as was the post care.London was the only place I was offered as Surgeon operates there.

Such alot of money Starfish

[fit4walks]

I heard this story now too many times. I was in the same position and eventually went to A&E and was operated 4 days later. My advice is: Do not wait when symptoms get worse. Go to A&E. Even though the NHS is stretched beyond believe, the emergency services are top notch when it comes to live or death. I hope to hear soon when your husband is on the other side. Good luck.

[Regeton]

We had to wait 18 months in all from referral to surgery and I had to complain via PALs too. I think we might still be waiting for the surgery if I hadn’t complained. Our consultant was very apologetic but said it’s just the way it is now. Very worrying.

[Gwindra in reply to Regeton]

Were you told you’d be waiting that long? It’s the not knowing that makes it worse. All we’ve been told is it will be months rather than weeks. No help whatsoever.

[Regeton in reply to Gwindra]

No we weren’t told. It took ages to get all the tests done and get a diagnosis. Once we were told he would need and operation we were told 3 to 4 months and it was just over 3 so that wasn’t so bad. Now we’re back in the system with our local hospital we’re back to appointments being cancelled and letters taking ages to arrive. Fortunately my husband is now well so it’s less worrying than it was.

[Gwindra]

Thankfully (I think?) his doesn’t get severe symptoms or I would have him down to A&E immediately. I’m sure some of the issue is that the hospital where the surgery would happen is 50 miles away, so kind of feel we’re out of sight out of mind.

[prospo]

I was classed as catogory 4 for double bypass (least urgent). The operation was cancelled twice and was eventually undertaken 15 months after first diagnosis.

[Qualipop]

Is he on the cancellation list? I see you said yes but still ask the secretary to make sure he is. Waiting times are slowly improving but not everywhere. Could he be treated at a different hospital that might have a shorter wait?

[Gwindra]

If the secretary replies to our latest email I’ll say again about cancellations or go through PALS again. My concern about asking to move hospitals is getting lost in the system and delaying things further!