Bypass Waiting List

[Unicycle]

Having been referred to Cardiology following an occasional racing heartbeat and palpitations, I had a consultation CT Scan and Echo Cardiogram in August / September 2022. A two weeks after attending the CT scan I received a letter stating

I needed a kidney function test prior and I should also have discontinued Metformin for a period prior to and after the scan . When I rang to explain I had already had the scan they said they it didn’t matter( begging the question of why they were required in the first place)

I then received a phone call at the end of November stating I needed to attend the hospital, on 6th December 2022 , for an angiogram and stents , which was a bit of a shock and I was driving the car at the time. Had the angiogram on 5th December 2022 , was told I needed triple bypass and that it would likely happen in about 3 months.

After 2 months had elapsed, I rang hospital to check on progress only to discover that the referral had not even been typed up or indeed sent. However , It was completed following my call.

I have now had my consultation with Cardiac Surgeon and told there is a five month waiting list for the operation, which constitutes 8 months from the time of angiogram.

I only really developed any noticeable symptoms after the angiogram , which were niggling chest pains but was woken up a week ago, in the early hours of morning, with chest pain and I have had minor pain on and off since , all of which occur whilst at rest.

GP sent me A&E last week and after 22 hrs sitting on a metal seat was told there was no evidence of any heart damage and I could go home but should return if any further significant pain.

Although I have encountered some very good clinical staff, the my overall impression is of a service that is poorly managed , and I speak as someone who has managed services dealing with child protection and risk of harm to the public ,so I understand the difficulties of dealing with unanticipated crises and fluctuating demand.

I can find no info regarding waiting times and mortality, which would assist me in deciding whether to raise the cash for a quicker private op or wait for the NHS which, given the performance to date, does not fill me with confidence.

Anyone have any experience of / thoughts on the matter , although I appreciate it is probably a question analogous to ‘how long is a piece of string’ .

[10gingercats]

If you decide to stay in the system which sounds diabolical in you area. .I would be telephoning the dept every two weeks to check up on cancellations AND put yourself on a cancellation list.Every dept has one. This way having had all your tests as you have mentioned here you can quite quickly slip into a slot vacated by someone else.Whatever you do don't just sit and wait for the five months to pass expecting you will get your bypasses done then.Try this for a while and if after say 2 months and you can raise the cash i would go privately .Of course you are free to go to any hospital in the country for your op. if their waiting times are better than your local hospita'l. There is a simple procedure for this and your local PALS or Citizens advice should be able to help you.Waiting lists vary enormously up and down the country.

[Unicycle in reply to 10gingercats]

Thanks for that , although I am not sure if Welsh patients can access treatment outside of the Welsh NHS : I think it might only be for a limited number of proceedures. Will definitely look into it though.

[Hidden in reply to 10gingercats]

I believe you are referring to NHS Choice, which is a little publicised option for selecting where you are treated. In my experience you have to ask for it rather than be offered it at GP level, and even then it is grudgingly acknowledged ,even resisted. However I also believe as soon as you are under the 'care' of one part of the NHS at specialist level you cannot jump ship. And certainly when my wife and I have used this option there is only a choice of specialists in the local area not nationwide.

[devonian186 in reply to 10gingercats]

I think you hit the nail on the head. The days are gone when you could just let the system do its work. You need to chase at every reasonable opportunity and work on the basis that the system has probably forgotten all about you and needs constantly reminding

[Hidden]

NHS waiting lists for surgery appear to a function of where you are, what you are having done and the pressure that specialist unit is under apart from overall theatre space, and importantly whether you are classed as urgent or routine. Without knowing anything much about you my guess is you are not classed as urgent. As to morbidity rates we are all different so that could be variable and you have no real knowledge of where you are in the range . I suggest you establish what the cost of a private operation and then weigh up its value, bearing in mind that 5 months waiting is only an estimate and that could increase. I had to have a surgical procedure done in 2021 and although the cost was probably much less than yours, decided it was well worth the investment given I was seen to within two weeks rather than 20 weeks and counting.

[Unicycle]

Thanks for that . I agree the question is a how long is a piece of string one but seem to have developed unstable angina , which they are aware of .

One of the issues is that I am self employed and I am not going to be offered a contract when I am waiting for bypass surgery and having it done sooner would enable me to earn money to pay for the operation.

Think it would be worth further exploration and , as you say, it might be longer than 5 months.

[Chappychap]

I don't have any medical qualifications, but I assume that the risk you're concerned about is a heart attack occurring before the operation? In other words it's a race between getting the bypass and an inevitable heart attack .

But that scenario doesn't really fit the facts.

The relationship between angina and heart attacks is actually quite loose. There are people on this forum who had well over 90% arterial blockage, and such serious angina that they were virtual invalids, but who never had a heart attack. Conversely there are other people on this forum who had arterial blockages so slight that they could only just be detected on an angiogram, zero angina symptoms, and yet who have had multiple heart attacks.

The main benefit of elective bypass surgery (and elective stents) is relief from angina, not a significant reduction in heart attack risk. Sadly there are patients who have had heart attacks relatively soon fafter bypass surgery or stents.

Consequently, for most people, waiting for bypass surgery is more akin to waiting for a hip replacement than say waiting for life saving cancer surgery. You may be uncomfortable during the wait, but your mortality risk isn't all that different pre and post surgery.

What is confusing about your post is that I was told when I was waiting for bypass surgery that there's a major difference between stable angina and unstable angina.

Stable angina is when your angina has a clear cause (ie walking up a steep hill) and stops relatively quickly once you cease that activity. Unstable angina comes on without an obvious trigger. I was told that if my symptoms switched from stable to unstable I should notify the hospital immediately, with the implication that I'd be moved up the queue. Your post could be interpreted as evidence of unstable angina, in which case I'm surprised that you're not being seen earlier. But if your angina is actually the stable variety, then a long wait isn't particularly unusual.

Hope that helps.

Good luck!

[Unicycle in reply to Chappychap]

Thanks for that : I understand that stable angina is not necessarily correlated with risk of cardiac arrest but my chest pain does not occur during exertion but when lying down /sitting , which would be unstable angina.

However, I was told by cardiologist at A&E that the current thinking is that if , following unstable angina, there is no evidence of heart damage, measured via Troponin level in blood then it is carry on regardless and represent at A & E if further incidents occur.

[Richard52]

I had an angiogram back in November 2022 and had a stent fitted but was told I would require an URGENT double or triple bypass (they wasn’t sure how many, they would decide on the day).

They said I would hear within two or three weeks from the surgeon for an appointment, 3 weeks later heard nothing so rang the hospital who referred me, the surgeon’s secretary, the cardiac nurse and my GP, but none of them really new what was happening.

Eventually the cardiac rehab nurse come up trumps and was seen by the surgeon two weeks before Xmas , had the pre op a week after and then the surgery 10 days later.

I must say once I eventually was found in the system everything went smoothly.

[Unicycle in reply to Richard52]

Thanks Richard, it is very helpful hearing of other people’s experience of this.

[Caro57]

hubby also waiting. Was told he’s “high priority’ so 4 month wait as opposed to 10-12 month for “routine”. Having looked at other areas it seems these are some of the shortest waits in England. Private appears to be ove 35k

[Unicycle in reply to Caro57]

Hi Caro

Yes the Welsh NHS is underperforming, despite the Welsh Government receiving mor money per head than England, but that is another issue.

I understood the cost to be between 20k for the standard off pump procedure to 50k for robotic surgery that avoids separating the Sternum.

[Larneybuds]

Good morning....having been caught up on the waitlist system,.,... my urgent operation was cancelled 3 times...whilst being in hospital each time and getting sent home. I waited 9 months before I eventually got my op. It sounds as though you have had a bumpy ride but because of what you have said....if I could afford to I would seek a second opinion and get some clarity on it all. If you don't get any joy regarding the wait list make sure you keep on to them. PALS are a good point of contact plus the surgeons secretary. I wish you all the best and hope you get sorted soon x

[Unicycle in reply to Larneybuds]

Thanks Larneybuds.

Think it would be worth getting a second opinion, particularly in terms of what blood vessels are harvested as I wonder if the use of a Mammary artery and the Saphenous vein is the best solution for the patient rather than the most convenient for the NHS. The NHS consultation was short and sweet with no real opportunity to discuss pros and cons of varying options.

[Larneybuds in reply to Unicycle]

Perhaps a second opinion might be beneficial then. You need to be absolutely sure what needs to be done....why etc and the best course of action for you. Don't be fobbed off . Xx

[Clerkenweller]

After 2 heart attacks in December my brother in law saw a consultant in January and was told he would have to have a triple by pass. The consultant would have liked it to be done in two to three weeks but the reality likely to be months. Lack of capacity and huge waiting list. The NHS is close to collapse.

[Unicycle in reply to Clerkenweller]

Hi,

I am clearly not in as difficult a predicament as your brother in law and hope he gets his op soon.

[momander]

Hi Unicycle ,I went I to hospital on 5th January and was kept in due to my history of heart problems and of the fact that both my stents had collapsed and so had the artery. I got a double bypass on 18th and was home on 23rd. I agree the NHS is in a terrible state..there was little or no patient focus in my hospital. Basic care only. No o e had the time. I wss given lots of information before my op but that was because the staff were legally bound to tell me!! Absolutely nothing afyer the op and no after care info on discharge!!?? I was left having to find things put myself? Apparently you ate supposed to do breathing exercises to strengthen your lungs after the op? I was given a wee plastic contraption when I had my lung capacity test. When I was out of icu and hdu and neck I the ward I asked a nurse how to use it and how often I should use it? She hzd never seen one before? Neither had her colleagues,? I was left to my own devices. Luckily I was OK. I am very grateful I wasn't sent home to wait, and I am very grateful for having the operation , bit the care in the hospital was really not that good which is such a shame. Would private be any better?? I would hope so as you are paying thousands of pounds!

[Unicycle in reply to momander]

I am sorry to hear you had such a stressful time and glad you are ok. There is clearly many things wrong with the NHS and I have, over the last 6 months spent time in hospitals where, in some there appear to be more staff than patients and in others chaos. I understand that there are issues with resources but there is no reason for patients being left in the dark about their situation. My professional career involved working with offenders and the service they get us gold standard compared to what I have seen on the NHS.

Change will have to come.

[Prada47]

Hello When I was in Hospital for an Angiogram the guy in the next bed had also had an Angiogram just before me, and the Cardiologist came to see him and just said you are an Urgent case for bypass surgery. Within an hour the guy was on his way by ambulance to Southampton for the bypass the next day.

I seem to be on the same cycle as I have seen him twice since at Clinic and he like me is doing OK.

I do wonder if having it done private is worth the money or would you be better waiting for the NHS and then using the money to help with recovery ! It all depends on yourself how you are feeling and are you missing work or are you retired etc, I think all these things play apart in your choices. I would just say in my experience almost everyone has a wait for bypass surgery and the Risk of waiting will have been taken into account as above. If it's Urgent it's Urgent.

Wishing you Well

[Unicycle]

Hi Prada 47 ,

Glad you are doing ok .

I am missing out on work as I am self employed and will not get a contract whilst waiting for bypass surgery. There is a point where the length of waiting for NHS op means that I could almost pay for the private op out of the lost income incurred through a long wait.

I did ask if they did a no win no fee service for the private op , but apparently not 😆

Would like to thank everyone for taking their time to reply as it certainly helps to get a sense of proportion about the scenario.

[Chickenlou]

Hi Unicycle

My partner had a similar “story” to yours: angina, angiogram (stents couldn’t be placed) told he needed triple bypass.

He was told he needed the bypass in September 2019, had meeting with surgeon in December (right before Xmas) and at that meeting his condition had worsened and his angina was unstable. At that point he became urgent.

He was offered a place on the cancellation list to be operated on as soon as possible (he actually turned this down, as didn’t like the idea of having little/no warning.)

Within 2 weeks he was offered a date at a private hospital (under the NHS) and had his bypass in January 2020.

It was reassuring that as soon as his condition worsened further, he had the surgery so quickly. (Even before his angina was considered unstable he had angina attacks almost every night and had blockages in 3 arteries, but initially not counted as urgent.)

Hope you get a date or some news very soon.

[Unicycle]

Thanks for that . I am getting unstable angina , but do not get angina during exertion. Am going to pay for second opinion and then decide if it is prudent to wait for NHS.

[Nikki0511]

I had a bypass in 2020 due to a rare condition

[gloucester1961]

Just wondering if anybody has any idea how long the waiting list for heart bypass is at the moment at Royal Papworth Hospital, Cambridge and the approx cost of going privately please?