UK NHS Patients

[Guest]

Hi All,
This is one for UK members who are NHS patients, or know about NHS AVR. I have a bicuspid aortic valve which I've been told by cardiologist isn't ready for Replacment yet, but my Aorta at 4.1cm may need replacing in a few years. As my valve leaks & is slightly narrowed I've been advised it will be replaced at the same time as my Aorta. What I'd like to know is how much choice do NHS patients have in valve selection & what valves are offered. Also at what measurement do the NHS replace the Aorta?
Thanks, Richie.

 

[Richie Rich]

Hi All,
This is one for UK members who are NHS patients, or know about NHS AVR. I have a bicuspid aortic valve which I've been told by cardiologist isn't ready for Replacment yet, but my Aorta at 4.1cm may need replacing in a few years. As my valve leaks & is slightly narrowed I've been advised it will be replaced at the same time as my Aorta. What I'd like to know is how much choice do NHS patients have in valve selection & what valves are offered. Also at what measurement do the NHS replace the Aorta?
Thanks, Richie.

Sorry, forgot to log in.

 

[Paleowoman]

Hi Richie - I'm a UK member. The decision about whether you have a tissue or a mechanical valve is something you would discuss with your cardiologist and cardiac surgeon, it's nothing to do with NHS policy. I have Bupa but the valve I got was exactly the same as at least one other UK NHS member here - maybe they'll log on. I got a CE Perimount Magna Ease Aortic valve, that's a bovine pericardial tissue valve. Some people get a porcine valve. I would think the choice of tissue valve is down to the cardiac surgeon as it's what they're familiar with which is important. My cardiac surgeon didn't give me a choice of tissue valve. I told her I wanted tissue and then asked her what type of tissue valve she would use and she said "bovine"....she didn't tell me the manufacturer or name, I found that out after surgery when I got my little card (you carry a card with you post surgery to let any doctors know what type of valve you have and it's serial number !). I've no idea what make of mechanical valve my surgeon would have chosen had I wanted mechanical, but I have no doubt that again, it's the one which a surgeon is familiar with sewing in which is surely important.

I can't answer your question about the aorta, but you might want to contact the enquiry person at the Society for Cardiothoracic Surgery: http://www.scts.org/enquiries.aspx I contacted them in the period before my surgery and had several questions I had answered. I was also put in touch with a wonderful cardiac surgeon (NHS) who is the SCTS Honorary Secretary who answered all the questions I sent him !

That website: http://www.scts.org/default.aspx also has a lot of information for patients, including details of all cardiac surgeons, how many operations they perform, what kind and their mortality rates. Their mortality rates were being published years ago, years before other surgeons' which were only published last week !

 

[Northernlights]

I am having an aortic valve replacement through the NHS system ( and have found this website very helpful). I agree with Paleogirl, you can have your choice, but you have to plan it by choosing the surgeon who in his usual practice is experienced in the operation / uses the valve which you want. Valve repair may be an option, but in general you will be steered towards mechanical if young, and tissue if old (with a grey area in the middle) but, within this, surgeons and hospitals will have their favourite makes of valve. Eg my hospital within tissue valves uses the perimount magna and St Jude trifecta valves, but doesn't use stentless valves at all. So if you have strong opinions about a particular operation or valve make sure you are referred to the right surgeon or hospital at the beginning of the process - and talk things over with your cardiologist: you may change your mind!

You have a right to your choice of hospital. Obviously you would want a tertiary cardiac hospital with a specialist aneurysm programme (I think in your position that would be more important to me than any make of valve). Waiting times can be quite long at present, thanks to funding issues, and choice comes with a lot of red tape, so if you need to change hospital you should start the process early on before you actually need surgery. I decided to change surgeons to get a different operation, but even within the same hospital this took some time. I am happy with my choice, but I wish I had made it at the beginning!

I'm not aware of any national UK guidelines for aorta replacement - ask your cardiologist - but patient.co.uk says:

'Asymptomatic TAAs are assessed to evaluate the relative risks/benefits of surgery. The risk of rupture depends on:
Aneurysm diameter. This is the most important factor predicting rupture. Generally, aneurysms of diameter >5.5 cm (ascending aorta) or >6 cm (descending aorta) merit repair.
Using body surface area as well as aneurysm diameter gives a more accurate risk profile.
Patients with Marfan's syndrome or a strong family history of TAA merit surgery earlier (at a smaller aneurysm diameter).
The rate of expansion is also important.'

So it seems there is no great rush.

 

[Paleowoman]

Btw - all the cardiac surgeons at the private hospital I had my surgery at were NHS surgeons at the nearest other big hospital with cardiac unit. And several of the patients on the cardiac ward in the private hospital were NHS patients because that NHS hospital had a contract with the private one to do some of their work, especially when their waiting lists got too long. The person I got most friendly with was an NHS patient, a retired GP having CABG. So privately or NHS, same surgeons, same valve selection dependant on the patient's wishes for tissue or mechanical and the surgeon's familiarity with various manufactures of valves. The difference between private and NHS is you get a private room with bathroom in private hospitals and the food is better. Treatment is the same. (Same mistakes too ! I got urinary tract infection right after surgery, and not three weeks later there was a whole thing in the press about infections in NHS hospitals, especially urinary tract infections ! I also hardly ever got my diabetes meds at the right time, just the same experiences as many diabetic patients in NHS hospitals !)

 

[Richie Rich]

Hi Anne, thanks for all the info & the links which I've found very usefull. It's pretty scarey to have to think about this but my Dr tells me what was once a possibility is now highly likely in the next few years. I'm aware that there is little difference between private & NHS in the UK apart from waiting times, which can be a concern when you have to wait a long time to get an op you really need.
Thanks, Richie.

 

[Richie Rich]

I am having an aortic valve replacement through the NHS system ( and have found this website very helpful). I agree with Paleogirl, you can have your choice, but you have to plan it by choosing the surgeon who in his usual practice is experienced in the operation / uses the valve which you want. Valve repair may be an option, but in general you will be steered towards mechanical if young, and tissue if old (with a grey area in the middle) but, within this, surgeons and hospitals will have their favourite makes of valve. Eg my hospital within tissue valves uses the perimount magna and St Jude trifecta valves, but doesn't use stentless valves at all. So if you have strong opinions about a particular operation or valve make sure you are referred to the right surgeon or hospital at the beginning of the process - and talk things over with your cardiologist: you may change your mind!

You have a right to your choice of hospital. Obviously you would want a tertiary cardiac hospital with a specialist aneurysm programme (I think in your position that would be more important to me than any make of valve). Waiting times can be quite long at present, thanks to funding issues, and choice comes with a lot of red tape, so if you need to change hospital you should start the process early on before you actually need surgery. I decided to change surgeons to get a different operation, but even within the same hospital this took some time. I am happy with my choice, but I wish I had made it at the beginning!

I'm not aware of any national UK guidelines for aorta replacement - ask your cardiologist - but patient.co.uk says:

'Asymptomatic TAAs are assessed to evaluate the relative risks/benefits of surgery. The risk of rupture depends on:
Aneurysm diameter. This is the most important factor predicting rupture. Generally, aneurysms of diameter >5.5 cm (ascending aorta) or >6 cm (descending aorta) merit repair.
Using body surface area as well as aneurysm diameter gives a more accurate risk profile.
Patients with Marfan's syndrome or a strong family history of TAA merit surgery earlier (at a smaller aneurysm diameter).
The rate of expansion is also important.'

So it seems there is no great rush.

Hi Northernlights,
Nice to hear from another NHS patient, when are you having your op & where? How long is the NHS waiting list for it? I think mechanical is the best for me at 40 unless my Drs advise me differently. Wishing you all the best for your OP.
Regards, Richie.

 

[Northernlights]

The NHS waiting time for all operations is theoretically within 18 weeks, but it varies considerably between hospitals. All hospitals are struggling at present with the coalition cuts and the waiting lists are under a lot of pressure. Because of the possibility of delay I think it's best to be listed for surgery at an earlier rather than later stage and to ask what the actual waiting time is - but with an aneurysm you may well be a higher priority anyway. I would prefer having such more complex surgery within the NHS rather than privately anyway, as the critical care facilities are better even if the food is worse! I get the impression that free- standing cardiac hospitals have shorter waiting times as they have a bit more control and fewer emergencies. Of course by the time you come to surgery things may be easier. Re mechanical I think your doctors will agree with you!

Thank you for your good wishes - my valve is supposed to be next week, but it's the time of year for cancellations . . .

 

[Paleowoman]

I would prefer having such more complex surgery within the NHS rather than privately anyway, as the critical care facilities are better even if the food is worse!.

Whilte it's true that critical care facilities in private hospitals are usually non-existent and if a patient needs intensive care they are sent to an NHS hospital, the ciritcal care facilities at the private hospital where I had my surgery is of the highest level of critical care, intensive care, that there is: http://www.spirehealthcare.com/stant...critical-care/ It's the same level as NHS intensive care. St Anthony's is one of the few private hospitals that does complex cardiac surgery which has intensive care (there are hardly any private hospitals where you can have cardiac surgery, two or three at the most) - you always have to go into intensive care after OHS:

St.Anthony's has specialised in cardiac surgery since 1975. Up to 300 heart operations are carried out annually including re-operations, combined valve and CABGs, off-pump cases and ‘mini CABGs’. The National Health Service unit in which the majority of the surgical team works performs in the region of 1200 heart operations a year in addition to those carried out at St.Anthony’s Hospital. St.Anthony’s has the highest reputation for the quality of its nursing staff. Nurses trained and experienced in cardiothoracic work care for the patients in the theatres, in the intensive care unit and on the wards. A feature of St.Anthony’s is that it employs two specialist Cardiac Surgeons of Senior Registrar status who live on site. In addition to assisting in the operating theatre, they provide 24 hour medical and surgical cover for patients in intensive care and on the ward. The hospital holds full accreditation with the Care Quality Commission and Clinical Pathology Accreditation.

St Anthony's also does NHS cardiac patients becasue St George's, the large NHS hospital in south London where the cardiac surgeons do their NHS work, often gets it's waiting lists too long or a patient needs surgery sooner rather than being able to wait, than they can do so as they have a contract with St Anthony's to pick up their slack !

 

[Red]

Hi Richie Rich, Hi guys,

I was/am an NHS patient and I had a bovine AVR. It was my choice after some research and discussions with the surgeon. I actually had my operation in the very prestigious Cromwell, which is a private hospital. I was originally scheduled to be 'done' at Harefield but the date over ran.

I got to choose my surgeon, under the patient choice, which is currently in operation here in England at least and I believe you can also choose your hospital, as long as your surgeon works there.

I went with the bio-prosthetic but you must make y our own choice and I echo what the others have said.

Do your research be guided by your surgeon, and do your research on them too.

With best zipper club wishes,

Red

 

[Northernlights]

I do see your point Paleogirl, it's clear that St Antony's is extremely good, and my own local private hospital has 9 intensive care beds and an excellent reputation ( and likewise does NHS work). But even so, when things go wrong, patients are transferred to the larger NHS hospital, and the transfer process itself is an added risk. And some private hospitals that do cardiac surgery have extremely small critical care departments which really only have expertise and experience in routine post- operative care - simply because they don't tend to see the more difficult cases and of course never see emergency work. So, while these may be very good for routine cardiac surgery like straightforward valve replacement, I feel that for more complex stuff a tertiary NHS hospital is in general a more cautious just-in-case-things-go-wrong choice; or, for the best of both worlds I suppose, private care within an NHS hospital. So much that makes a good hospital is the whole team and the ability to deal with post- operative emergencies - and that's the area where a good NHS hospital scores over a good private one. My husband spent a couple of weeks in critical care at Papworth (32 beds)and it was extraordinarily impressive and superbly run: nothing in private hospitals would come remotely close. Most people don't need that level of expertise, of course. It's all hypothetical anyway if you don't have insurance, and as I don't, I guess it's a good thing i'm happy with the NHS!

 

[maisiejane]

Hi Richie,
Firstly, Hiya to everyone.
I had my AVR in February on the NHS and I received the same valve as Paleogirl.
To be honest, it was this Forum that helped me to know what questions to ask, if it wasn't for me asking my questions, I would have been given which ever one the Surgeon favoured and it would have been mechanical!
Unless your surgeon likes to empower the patient, you wont be shown a variety of valves. I am unsure about what measurement your aorta will be before they advise surgery, as my surgery was due to the lid not shutting correctly. Good luck
Deb

 

[Paleowoman]

I do see your point Paleogirl, it's clear that St Antony's is extremely good, and my own local private hospital has 9 intensive care beds and an excellent reputation ( and likewise does NHS work). But even so, when things go wrong, patients are transferred to the larger NHS hospital, and the transfer process itself is an added risk. And some private hospitals that do cardiac surgery have extremely small critical care departments which really only have expertise and experience in routine post- operative care !

Hi Northernlights - no, they don't do complex cardiac surgery like valve replacment in private hospitals, apart from St Anthony's and a couple of others (four others to be precise from the SCTS's website) in the UK. You always have to go into the top level of intensive care after valve replacement so only the few private hospitals that offer that will do.

Those other private hospitals which you mention won't be doing valve replacements. If you look on the Society for Cardiothoracic Surgery's website you will see all the hospitals listed which do cardiac surgery and which ones are private: http://scts.org/patients/hospitals/ The Cromwell, which Red went to, is also a private hospital. There's no way that the NHS would send patients to private hospitals which weren't as good as the NHS ones which the patients would have gone to in the first place had the waiting lists not been so long ! When I was in St Anthony's they were bringing NHS patients there ! They weren't taking patients to St George's the nearest NHS hospital.

But the other private hospitals where patients have other types of surgery, yes, when something goes 'wrong' they are sent by amublance to the nearest NHS intensive care hsoital because virtually all private hospitals don't have a proper intensive care unit.

I don't pay for my Bupa - it's my husband's employer pays it all (goodness I could never afford Bupa - hey we live in a three bedroomed ex-council house - that would mean nothing to our American cousins LOL). In fact at St Anthony's there was one other private patient on the ward ! So many NHS patients there you wouldn't believe it, and it's a way the NHS fiddles it's figures. Don't you believe it when a hospital says that it's on top of its waiting lists - they're simply shipping their patients out to private hospitals so it looks like they're doing really well. Of course it also means that the NHS pays the private sector….the NHS being you and me the taxpayers. It would be better if the NHS hospitals told the government they were short of beds, doctors and nurses and that they needed more money !

 

[Northernlights]

Sorry for not making myself clear, Paleogirl. It's true that a minority of private hospitals do cardiac surgery, but the Scts data is a bit misleading in that private hospitals don't have to submit data and very few do, so only the four large London private hospitals appear on the Scts site. Perhaps surprisingly, a number of smaller private hospitals outside London do cardiac surgery and valve replacement. The one I was thinking of was the Spire in Cardiff, which does valve surgery and only has 3 intensive care beds - very different from the big London private hospitals like St Anthony's or the Cromwell. I personally wouldn't go to somewhere so small even for a routine valve replacement, however good the consultant, and certainly not for anything more complex.

I'm sorry I didn't make it clear that I was talking about transferring cases with severe post-operative complications to the NHS from private hospitals. As you say, this happens mostly in private hospitals without intensive care beds, but all of them do it for post-operative emergencies - my local private hospital does this even though it has 9 intensive care beds and does cardiac surgery including valve replacement for the local NHS hospital. There were 2,600 emergency transfers to the NHS from private hospitals in 2012-13, and 6,000 overall.

I suppose what I want to emphasise is the huge gulf between a routine brief intensive care admission after cardiac surgery of an essentially well patient, and the sort of round-the-clock intensive expertise required if that patient suddenly deteriorates badly. The latter needs a whole different skill set and a whole-team of on- site specialists and intensivists, and smaller private hospitals are not geared up to this even when they have some intensive care level beds: because the hospitals don't deal with emergencies the resident staff don't have the same level of experience or expertise with really sick patients (though I do agree that if the NHS is sending patients to a private hospital, that is a vote of confidence in the hospital's standards, and it has certainly also pushed the private hospitals to improve their level of on- site medical cover). Of course it only matters in the rare cases when things go wrong!

I absolutely agree with you about the use of private hospitals by the NHS. As you say, it masks the need for more NHS capacity, and instead money is being siphoned off from the NHS to prop up the private hospitals otherwise declining profits. Privatisation by stealth.

 

[Paleowoman]

Hi Northernlights - I never realised that there are small private hospitals doing cardiac surgery ! You would have thought they should be listed in the SCTS site. I certainly wouldn't use a private hospital not listed by them. Alhough they don't give the statistics for the specific private hospitals that they do list, the say exactly where all the cardiac surgeons do their NHS work and so a patient can go by those statistics - in my case the surgeons were all at St Georges which is a massive and horrible hospital - you could die there and they wouldn't find you for a week ! I have a doctor friend who had an operation there and she had some stories to tell !

I think the main reason I chose St Anthony's rather than one of the other private London ones or private ward in an NHS hospital that does cardiac surgery ie the Brompton, was that it is very close to our home which made things much easier for my husband and son. It also meant that my endocrinologist and cardiologist paid me visits…my endocrinologist was a star ! (he would have been paid by Bupa ! But he's still a star to me !).

 

[Northernlights]

Hi Paleogirl, if you've got other conditions I can definitely see the advantage of having the other specialists who treat you available. It's so important to have doctors you really get on with well and trust completely. And it's very nice to have a good hospital close to home!

 

[Richie Rich]

So am I right in thinking as an NHS patient I can choose my surgeon & hospital, if that's the case who/where is best for an aorta & valve replacment?

 

[Paleowoman]

Hi Richie - one way to find out who and where is best for you is to look at the Society for CardioThroacic Surgery website which has details about all the hospitals that do this surgery and all the consultants that do it - to start go to this page: http://scts.org/patients/hospitals/ and find the nearest hospital to you that does cardiac surgery (clicking on the map is the easiet way) and then click on the individual cardiac surgeons names that is listed for that hospital. You then get graphs showing how many of the different cardiac operations each surgeon does - go for the one with most experince in the particular type of surgery you want, compare the surgeons with each other and also view their mortaility rates. Then look for hospitals further afield. Also key in a likely surgeon's name in the internet and look for reviews or press articles about them. Also ask your cardiologist - that way you will get a named hospital and surgeon to start with and work your way from there. It requires some investigation. I took several months to make a decision and then also asked other consultants whom I'm under who they would go with if they or a member of their family had to have aortic valve replacement.

 

[Northernlights]

I agree with Paleogirl, the SCTS website is a good place to start, and your cardiologist. You can look at hospital websites too - if they have specialists in the aorta they will say so and it gives you an idea of where they feel their strengths lie ( the websites will often give their surgeons interests individually too and you can follow them up through the SCTS) In general you want one of the major cardiac hospitals with a national reputation like Papworth, the Brompton or Southampton (these are just the ones I know- there are more!). Newcastle and Liverpool heart and chest are also possible if you live further north, or I guess Birmingham but I don't really know about them. The advantage of the stand -alone cardiac hospitals, apart from their expertise is probably shorter waiting times as they don't have an A&E and their budgets are more ring- fenced. Because people frequently travel to them they generally have accommodation for relatives.
There may well be excellent specialists in the smaller hospitals that do cardiac surgery but they are fewer and harder to distinguish, so it's easier to start by short-listing the best hospitals and then looking at the surgeons within them!