I’ve made a little progress today where my current treating hospital cardiologist has recommended I be referred to a London cardiologist (so they would take over my case) as is a specialist in this area of myocardial bridges and testing whether they are a cause or not of angina (non obstructive coronary artery disease). It sounded like a group discussion was had and it was thought I’d be better off with this specialist/ make perform tests sooner (not holding breath). The current cardiologist said if I had standard blockages stents would be no problem as it’s their expertise but this is different and can’t be stented. I totally appreciated their honesty and thinking of what’s best I.e current hospital can’t help as such. Not contemplating this new cardiologist saying no, only so much can cope with, ignoring that for now.
How does this work, do cardiologists (or any such medical people) take out of area patients and does it still come down to clinical need regards when seen? Can they refuse? Does it come down to budgets? I’ve been told we have a right to be treated where we prefer (I.e. for justifiable reasons rather than just fancy it).
anyone had to be referred quite a distance, how has it worked out for you? Any advice?
Having to travel will of course be difficult and costly but needs must if there is a chance can get my life back.
thanks
38 Replies
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Hello
This is good news
As your case seems a little complex in these cases they will write to the nearest Hospital that deals with them , they will not refuse you unless and this is such a slim chance they did not agree with your Cardiologist who you have been seeing but as I say that is about 1% they would and yes they will take patients from different areas
I imagine getting seen any quicker may not happen but they will see you as soon as they can like other patients they will have on their lists
The travelling and expense will take it's toll but so worth it as you say knowing you will be seeing specialists that deal with your condition you will be in really good hands
Good luck I hope you get an appointment soon x
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oh as soon as I saw you’d responded on Alerts, I knew whatever the answer you’d be supportive as you are with others! Thank you for that first. In answer to my questions that’s reassuring and totally understand will need to wait in any case.
Yes an appointment will be great just helps plan and also know there is hope in sight / gives you something to work towards. however long it may take. I think I have been good, so maybe Father Christmas might get me an appointment soon after Christmas, no harm in wishing. 😂
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Hello
Am example I can give similar I think is after having my heart attacks and then an angiogram and my Cardiologists can see what is needed which was a triple Bypass but our Hospital does not do them so then they sent all my notes over to the Hospital that does nearest to me and I think I waited a couple of months and they got in touch and took over
I would imagine it will work something similar in they will send all the information about you over to them and then they will contact you with an appointment I do not think for one minute they will refer you back to your Doctor as you are still under them they are just passing you over to another Hospital if this makes sense
I totally understand and get it that just knowing something is in sight and going to get done can help us so much and you have that now and honestly I would be really pleased to know I was going to be looked after by top specialists that deal with my condition
Fingers crossed it is not long before they contact you but you now have a clear path to the treatment you need in place x
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thank you for that information and crossing of fingers, there have been a few dark “moments” this week thinking about what might be, i do feel more upbeat now. it sounded to me per cardiologist it’s like what you explain above I.e. going from one cardiologist straight to the other, my GP will be there in background being kept abreast by letter. Cardiologist said they would be emailing and sending records through so I will watch this space and know this takes time. Thanks 😊
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Hello
I know how those dark moments feel but you are now coming through them and this wait you are having to go through it will pay of and I look forward to that post when you tell us it has x
From your replies you seem to be somewhat over your recent bout of that which must not be mentioned? I hope so, and you are back to your usual empathetic self.
Morning BeKind, I'm so sorry you're having tummy troubles now - that's all you need! I've suffered from diverticular disease for donkey's years (only discovered what it was when I was hospitalised with it a few years ago). The only thing that ever helped me when I had a bout, was those little Yakult drinks. Before I discovered them the attacks would last quite a few days but once I started taking them, after someone recommended them, I was always well again after a couple of days. These days I always keep them in the fridge just in case (I usually end up putting them down the sink though as the use-by dates run out before I need them - which I don't mind at all! - they're my little life-saver). Oddly enough, ever since my triple-bypass at the end of February this year I've only had one instance of a dicky tummy - Hurray! - and the Yakult helped as usual. I'm putting it down to the lansoprazole effect as the bouts usually happened at least every six weeks in the past and I'm finding I can also eat a much wider range of food (fruit was always a problem for me, from the acid in it I presume). Ah well, one bonus of the bypass I suppose! Do try them, it's definitely worth a shot if it helps. Carol xox
I suffer with IBS and to be honest I think the thing I have just had the c attacked maybe my stomach as it can affect your stomach
I always used to have a Yakult drink years ago and for some reason I stopped and your reply now has been a great reminder I am sending the Husband out to get me some today !
Thank you so much for your reminder and I hope you are keeping well x
You're probably right BeKind, it probably has been 'that which can't be named' at fault! I'm keeping grand, thank you and I hope the little Yakult drinks work for you too. They're just a staple in my fridge these days for tum emergencies. 😊
My favourite nurse (May), when I was in hospital for the bypass this year (I know it's not good to have favourites but I can't help it, she was brilliant), was originally from China and swore by probiotics. She settled here in Northern Ireland where she met her husband. She told me Yakult was looked upon as a real treat by all the children she knew at home, and they enjoyed it much more than fizzy drinks or a bar of chocolate. She even gave me a dose of "cute" medicine every day when she kept me up to date with phone pics of her gorgeous little daughter and husband. 🙂 They definitely helped my recovery! xox
I have taken one and of course I expect a miracle which has not happened
O I think it is fine to have favourites in the environment you were in and she sounds like a lovely Nurse I think she would have been my favourite to had I been lucky enough to have been in her care
I am so pleased you are keeping well and hope you have a lovely weekend x
I usually find they start to make me feel better next day, but I have such faith in them I imagine I can feel them working immediately 😆
I'm meeting up with my three cousins today (Saturday) for lunch - it's our wee treat that we try to make happen once a month but it's usually every two months or so. We head into Belfast (getting on the train at our respective stations and meeting up on board). Head to a posh('ish) restaurant for lunch and afterwards to a cocktail/piano bar in a stately old hotel near the station before heading home again - all the while reminiscing about the good old days when we were children. Our Mums were all sisters and have all passed away and we're all almost the same age (only 6 months or a year between us) so spent a lot of time together as kids.
I shall dodder off now and start to get myself ready and I hope you have a wonderful weekend and start to feel better BeKind - you don't deserve to be feeling ill like this, you've had enough to contend with! Carol xoxox
Well if it is mind over natter I felt a bit better last night
You sound like you have such a lovely day planned I hope you enjoy it
Have a lovely weekend to x
I suggest it will be dependant upon whether you have been discharged from your local cardio team back to the GP or whether they remain responsible for you until you are handed over to the specialist. Do you have any paperwork or the like which explains this? If you have been handed back I guess it is almost certain to be down to the GP to organise your next step, unless the local cardio team already have set this up. If I were you I would certainly be talking to the GP who will be able to advise the position and the protocols that have to be followed.
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thanks it sounded like my current cardiologist is referring me straight to the other cardiologist along with a referral email and records, with GP kept abreast in background (letter always goes to GP too who sorts out meds). Letter will come out to me (and GP) about all this but can take up to at least two weeks so experience with this cardiologist tells me! If I hear referral sorted and new cardiologist at least contacts before Christmas that would be amazing. I was concerned though earlier I would get left in no man’s land between two cardiologists as my GP wouldn’t get involved in this. But fingers crossed it’s Seamless process albeit won’t be fast.
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I had a similar experience waiting for a cardiologist's letter to be issued to my GP since it contained instructions concerning medication changes and my GP would not act without it. I ended up chasing the cardiologist's secretary. What good that did I don't know since it still took longer than two weeks to arrive. My GP was less than pleased with this.
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Have Had similar experiences! Once two weeks is up, I will be enquiring with the secretary regards progress.👍
It is possible to be referred to a specialist tertiary centre.
I have been twice referred for a review in this way in the past. No problems at all. The specialist reviewed my results, gave their opinion, which was accepted by my local Cardiologist.
I then chose to no longer see the specialist, however they are still available to advise on my care in the future, if necessary.
My Cardiologist at the secondary centre remained responsible for my care as this is where I am admitted.
sounds promising based on your experience, my current cardiologist felt it better I be with one or other. All depends on outcome I suppose where I stay. I did get feeling my cardiologist was thinking of what’s best for me!
My understanding is that we always keep our GP but we can also get passed up from Primary (GP) to Secondary (local General Hospital) to Tertiary (Specialist/Regional Hospital) as our needs get more complex.
Any delays I have had are administrative, waiting lists and also funding, as an out of area referral needs NHS funds to transfer.
The care I’ve had out of area has been v good. Problems have arisen over quite a journey to travel to appointments when i wasn't well, and when i have had an emergency admission, as ambulances admit to the closest hospital, and cooperation and treatment discussions were very patchy between Secondary and Tertiary Centre.
thank you for that information and advice really helpful especially explaining three tier approach. I’ve become accustomed to chasing things up since this all started! once I know who’s who at tertiary centre (the new cardiologist works it seems at number of hospitals) I’ll be keeping track. 😊
Thanks. I agree, its best to know exactly where to chase and focus your efforts! My local hospital is very slow with many tests and procedures. But no wait at all at the much bigger (Tertiary) Centre., though it does mean travel, each time.
my current cardiologist did mention the wait at current hospital for a particular test and that there still would not be the expertise, your experience gives me hope, I will have to manage my expectations though but at least it’s specialist help.
Hi. All adult congenital heart problems in the NW are seen at 1 of 3 hospitals. Either Wythenshaw, Manchester Royal or Liverpool Heart and Chest (where I was sorted out). They have done this as is it better to keep the expertise in the same place and have cardiologists on call 24/7. I know it's not the same as your problem but shows that it works. Liverpool also has a visitor house for relatives to stay in. Yes, it's distance to go, but at my post op visit I was in and out in 50 minutes, having had an echo, ECG, height etc and seen the consultant who did my procedure. See if you are eligible for help with the travelling eg are you on benefits etc. I stay at the local Travel Lodge ( £36.00) and have a leisurely breakfast at the hospital cafe so I'm relaxed for my appointments. Much better than fighting the M6 at 8.00am!! good luck
thanks for the practical tips, once I know what hospital will start looking at options (and cost - not on benefits) in preparation. Staying night before May take the stress out of it, I walk at a snails pace sometimes so need to consider that, I don’t like the underground at the best of times!
I was transferred from Basingstoke Hospital to the Brompton for my mitral valve repair. My sister law is also being sent to the Brompton from North Devon for same reason. While i was in the Brompton a guy was brought in from Truro hospital (where he had been for 5 weeks) for a triple bypass as he wasn't suitable for stenting. I think all depends on what reciprocal arrangement your local acute trust has for major heart surgery.
thanks, I think my local hospital doesn’t do bypass and are sent to another hospital in same county. i think I’m being referred due the cardiologist being specialist on this occasion so can investigate further, Although it’s way out of area so I am hopeful and people have advised they should / likely to take me, fingers crossed though.
hello in brief a myocardial bridge is a congenital heart defect where an artery (most common is LAD) runs through the heart muscle and not on the surface like normal. So the artery has a “bridge” of heart muscle over it. The compression created (think standing on a garden hose pipe) can causes angina, as well as microvascular issues or coronary vasospasms. It can also cause build up of stenosis at the bit before the artery goes into the heart muscle. Usually identified by coronary angiogram. Tests to see what impact are stress tests and invasive wire tests with particular chemicals regard flow and pressure. Treatment is meds and if required CABG or “unroofing” (removing the muscle bridge above the artery). There is little research and most cardiologist don’t know much about them!
And I have been told during a conversation outside the hospital with a clinical director that the hospitals in London have the eyes of the world on them as they are the best in the world
I certainly meet lots of nationalist in the hospital I visit
I did not have to do anything a letter was sent to me from the hospital with an appointment and I just turned up 🤣
The hospitals have accommodations near or within the hospital for a small charge
I have used them many times as my husband also attends a London hospital as he has a lung issue
So if you need any procedures you or your family can use them
Again it’s amazing
Your cardiologist has probably asked the specialist for a second opinion and help so I have no fought at all you will be welcomed and well looked after it is what these hospitals are for 👏
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Micro vascular angina specialist 
Update on Angiogram
Cold Turkey Stop of Bisoprolol for PVC’s Change to Diltiazem 
so worried about my heart
Scarey but reassuring 
