I don’t know where to start, they just don’t care, I’m speechless by the way me and others like me are treated. I had the change to speak with my assistant cardiologist from back home and she didn’t gave me to much, ‘ Please Mr .Voicila ,just followi what the doctor said and regarding the things that you ask ‘ and she started explaining me what each of my diagnoses does (exactly what I’ve read on the internet). Everything that she was saying was exactly what the cardiologist said and then she booked me in 2 weeks for a phone appointment.
Today I went to my GP and again, a big wall, the biggest I ever seen, me trying to ask the questions that I prepared with, she was saying ‘well yes ,if 2 cardiologists said you are OK and the test are OK ,it means that you need to keep you blood pressure down and probably things will be better’ and then again,me asking’ how severe is it’. And she was ‘ well seeing the test and if you only taking pills for blood pressure and nothing for the heart, it means that things are optimistic.’
Seeing that I can’t go anywhere,I’ve said that my cardiologist from Scotland said that I need to speak with my GP to make a program with things to do,follow up, blood test to see how my conditions are evolving, and Iask her ‘when should I come for the next check up’ and she said ‘ well seeing that things are looking OK now ,I guess 1 year ‘ . My cardiologist from my country said to have a check up in 3 months and to continue in top of it , all the time.. in case something is going wrong to have time to do something about.
Know ,I’m again ground 0 . Please can someone help me with what is going on,why they are letting us getting more sicker until there is no way of coming back. I don’t have anxiety with my condition, but I developed anxiety from the doctors.
Does anyone in Scotland or England know a good cardiologist, even private ,thank you .
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Razvan_Catalin
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What I’ve learned on my journey of trying to get doctors and cardiologists to listen is, it is better if you can get a letter from your main cardiologist (you don’t say where they are based) clearly outlining that they have asked that you need a check up for 3 months time and that they should be happening on a regular basis. The cardiologist should clearly state what your diagnosis is, what treatment you’re on, and what tests are needed. I have found many a times, my GP is reluctant to act on anything I say unless she gets it in writing from a cardiologist or someone senior to her. Only then, is my GP prepared to act.
If you want to go private, know that this is a costly route as I’ve also experienced this. Most cardiologists provide private treatment however, you want to find one that specialises in your heart condition. You will most likely still need a referral letter from your GP even if you want to go private as this is still a requirement for the private sector as well.
I hope others can share their experiences with you too.
+1 on needing something in writing from the consultant before a GP will act, and the likely need for a referral letter from a GP to a consultant before they will take you on. At least that is my experience of how it works in the UK.
hi, but I gave her the letter from my main cardiologist,the one that find the condition back home,I told them is a private hospital in Romania, well know and the cardiologist she even is a cardiologist for Romania ‘NHS’ . I had the letter ,i’m still wai For the official version to be translated,because is in romanian,but I translated for her there and still nothing.
I think if you can have it translated into English and then show your cardiologist, that might benefit you. Also, can your cardiologist in Romania write in English at all? The reason I ask if that they can personally email your GP surgery with the request and that would be half of your job done. The other part would be for your GP to then follow the instructions as set out in that email by your cardiologist.
i think the onus is on the NHS cardiologist. They should write/email your GP with any instructions about your care. If this hasnt happened I would try to speak to the cardiologists secretary requesting this. In my experience they are usually very helpful. Good luck.
Hi,I know is costly,I’ve stress my GP to have an echocardiogram or MRI when I started to have the pain and she said that I need to see a cardiologist,but is gonna take months. I said then ,I want to go private,please send a referral . I did a stress test and 24 EKG (3 coards) not 12 like a more serious one. But even then,when I went into the cardiologist cabinet ,he started with ‘ Yes,after reading what you GP said and her notes is guit impossible to have a heart attack’ straight away and the I insisted that I need to be more sure and me being strong and looking healthy is not the way to diagnose a person,because this is what he said ‘ You look healthy and strong and at your age ,which is 38, is rarely you can have something. Is incredible, back home uou go to your GP and say, I have chest pains and shortness of breath ,the first thing they said is let’s have a echo to see if there are problems with the heart and the you start lower.They start with the worst thing you have so they can catch it in time and then the not life threatening ones. Here the firts thing GP said to me,the first thing ‘I think uou have anxiety’..🫣
Yes, well most of the doctors I saw prior to my heart attack last year also passed off my symptoms as anxiety until I had a heart attack, sadly. Unfortunately, because we don’t have the typical characteristics a heart patient, they often use our age and our ability to still be able to work, exercise and so on as a reason to sometimes, not further investigate our symptoms.
You do have a right to a second opinion as I’ve been recently told on the NHS. I would perhaps wait for your cardiologist in Romania to email your GP surgery first. If your GP does not act on the email, then I would suggest you ask them to refer you to another GP and or cardiologist for a second opinion. But I believe you would have to source out the doctor yourself.
I’m so sorry for what happened to you and you are not alone, many people have died because of wrong and not caring diagnosis. I have another option,if they don’t accept and take into consideration the email from the cardiologist from Romania. I will go to Newcastle to have a private echocardiogram,again, because I don’t need a referral there. They said is gonna be done and the cardiologist will send the findings to my GP… the only thing take I can think about it,a solution .
Well,they only gave me blood pressure medicine, Perindopril 4mg/ Amlopidina 5 mg ,but I didn’t took them .I started with intermittent fasting,no sugar and no salt and exercise and my blood pressure went down to 125/83 in 2 weeks from 155/93.
I want to continue like this and if is OK and blood pressure stays low is a big win for me.
Well this medication was prescribed for a reason, for your benefit, not the Doctor's. Obviously, its your choice, but . . . You only have to read members stories and experiences on here, to know how important it is to take your medication as directed.
Your posting sounded very angst ridden, and whilst I appreciate getting all the information together that you need can be beyond frustrating, especially from across countries.
I lived abroad for many years and returned to the UK with 3 stents and an ongoing undiagnosed heart condition, so I do know how difficult this can be.
Anxiety and stress are not good bed-fellows for raised BP.
It's not called the "silent killer" for nothing.
Intermittent fasting, cutting out sugar and salt and excersize are all commendable behaviours, but to be fair, you've only done this for 14 days.
It's a big ask of yourself and it may be prove unsustainable on a long-term basis.
I believe that I did read, in one of your posts that you referred to Left Ventrical Hypertrophy. I didn't quite know from reading it, if you have been formally diagnosed with this as a condition or not ?
But if you have, ,then you'll have been made aware, that this condition is called HYPERTROPHIC CARDIOMYOPATHY. Sadly, this condition is not curable, its for life, but the symptoms of the condition can be treated with a combination of quite a few medications.
There are, in very occasional circumstances, surgical interventions that may ease the symptoms. Medication is the first line treatment. something to bear in mind is and definitely includes
BP medication.
If you have been formally diagnosed with this, I'd suggest you read up on it. Not on Dr Google.
Check out the organisation CARDIOMYOPATHY UK.
Not to alarm you, but this condition can, on occasion, cause sudden cardiac death, no pre-warning.
How do I know ?
Because I have it myself . I was diagnosed in 2020 here in the UK.
So, like other members have mentioned to you, get all your information from your medical team overseas, officially translated and validated. This you can then present to your GP
Hi Wardija, thank you for replying your story,feel sorry for you health issues. I didn’t take the medication yet,because the Cardiologist said if I keep my blood pressure under control things will be OK,she also said you are not gonna have a heart attack but this is for life . I don’t have nothing against medication, if I need to take them I will take them.I wasn’t prescribed any heart medication (hopefully that is a good sign) and that is why I in pursuit of finding gravity of the situation. I’m stressed every time I have a symptom of shortness of breath (why I have for almost 20 years,but cannot relate if is from my condition of is something that I have) but I put it as a symptom that I have for my condition. Yes I have Left Ventricular hypertrophy and also diastolic dysfunction delayed when relaxing (Which is from what I’ve read in connection,because of the stiff wall the pumping has a delay), again the cardiologist said that if you keep blood pressure under control the wall may recover a little but not all.This is what I was saying, that I told my GP everything that was on the paper, is not like rocket science to tell her the diagnosis,she understood what I was talking about she even explained what they where and after asking what is the next step, like do I need to come every 3-6 months for check up, do I need to take the blood pressure pills if I managed like this,-she said no you don’t have to, do I need another echo in 6-12 months to review my situation,things that I’ve heard from my cardiologist in Romania. If she needs the papers translated and then she will take me serious,that is just absurd. After all she said that with one 24 EKG -good ,a stress test - good and with what my cardiologist in Scotland said and with what the cardiologist in Romania said is sufficient to see that you have to keep blood pressure under control and things will be OK. This is what she told me . I k ow what the disease is and I willing to fight to get better and keep it away from me as much as I can,but with a few informations and no empathy is hard.
Yes, it can be a very difficult journey.I guess you just have to provide the UK with exactly what they are asking for.
I dare say, UK protocol is at play here and there will be issues of ethics, nationality and legal regulations and formalities that need to be addressed prior to moving things forward.
Just asking, but are you actually entitled to receive UK NHS public treatment ??
The UK has to "protect the public purse" so to speak, so maybe nationality/eligibility could be an issue . .
I'm assuming the Consultant in Scotland, that you refer to, is in the private sector ?
I'm more than a little surprised to hear that whoever diagnosed your HCM, did not put you on the basic, standard post-diagnostic medication, to give you the best chance of minimising further rapid deterioration of the condition along with mitigating the uncomfortable symptoms of the condition.
Sounds odd to me . . 🤔 that they would knowingly leave you like that, but maybe I'm missing something here . . .
Either way, I hope you manage to find the answers you need, and look after your health - tomorrow is not a promise. 🙏🙏🙏
Yes i’ve been in UK for 7 years ,I have settled status and yes I was private and whether is about,is about being human,that’s why they are doctors, this is what they swear to protect us. Or we only see good things and good doctors in Grey Anatomy and a few real good doctors.
Sure thing. My symptoms were pain in my neck and shoulder-blades. I got racing heart and palpitations but no deep chest pain.Breathless to the point that I felt I was going to pass out and unable to speak.
I got Breathless, just picking up my dogs bowl from the floor.
There was no way I could work. I could bearly walk more than a couple of steps without having to stoo and sit down and rest for about 15 mins
I’m really sorry,I’m an emphatic person , and I can tell you I fell every emotion and I know is hard for you,big hug and lots of love and support.I was home and my dad had terminal cancer,I haven’t seen him for 4 years ,only on facetime, the moment I saw him ,weak ,skinny,barely walking and talking I felt a deep pain in my chest I just couldn’t recover,it took me 2 weeks to come a littLe normal. My symptoms are milder,I can run 3-5k in 7 minute, do strength exercises,Yoga even HIIT exercises. I only have shortness of breath (not all the time) ,stabbing pain in the back and around left chest (mild ones and not all the time) and I’ve noticed that that I need to rest to feel good,sleep 7 hours. Regarding why she didn’t gave me any medication,maybe she saw that not to bad,I cannot tell you, even my brother call her and said ‘That my brother was to shock about the results and wanted to ask if he needs any other medications’ she said ‘ no ,no he needs to keep on the pills and keeps she blood pressure down’
Thank you for your kind wishes.I'm very sorry to hear about your Dad and the distress that you went through.
Regarding your heart issues, it's good to know you have settled status in the UK, so this shouldn't pose a problem to accessing medical treatment here, unless there are any restrictions attached to it.
I'm not sure if you are actually in Scotland or England? I'm looking at the situation from an English perspective.
As I understand it (and please correct me if im wrong here people), Scotland has its own NHS, devolved to and run by the Scottish Goverment, so there will be some potential for variations between the two regions.
Should you need further support, your best bet is to make contact with patient advice and support services in Scotland, provided by Citizens Advice Scotland.
I live in Scotland,I will send a message to Citizens Advice try anything to get some where. I wanted to ask,because I have this symptoms and I cannot understand why, is it because of LVH or my anxiety/stress or maybe something else.
-night tremors,inside,I did notice them visible.
- left leg tingling and mildy numbness (i have a bad knee and everytime I do sports,I kind of force him),but maybe is not from the knee
- shortness of breath when I’m tired,I haven’t noticed them during exercises or when I’m probably rested ( but I’m monitoring this)
-mildy /short stabbing sensations on my left side chest,unde the armpit and also in the back.
Ah I'm sorry to hear how you have been treated, seems that all doctors treat heart patients this way and they seem to blame everything on anxiety! I really feel for you hope you can get some answers as to what is happening with regards your health cause your GP dosent seem the least bit bothered which is terrible! 💔
Hello, I am British but live in Bulgaria a neighbour of Romania as you will know. I have experience of the health systems in both places.The health system in Bulgaria is also very different from the UK,, partly due to the difference in side of the population (much higher in the UK therefore much greater demands on the system) and partly because both Bulgaria and Romania are ex-communist countries so have different ways of doing things. Following a heart attack plus stent in 2008 I have found both systems to be satisfactory but different. Yes, long waits for appointments in the UK, but waiting times depend on the severity of the symptons and, if necessary, you will be seen quickly.
Can I suggest that your first step should be to get a legalised translation of the document from your Romanian doctor - the Romanian consulate should be able to help with this - then give this to your British doctor (GP or cardiologist)?
I would strongly disagree with the "all doctors" label.I do feel that There is a problem that if you suffer from anxiety Doctors will tend to but it down to anxiety but initially do all the necessary tests to rule out serious problems. I have had my share of poor even bad experiences with Doctors at all levels but the majority have been great.
When I went to the cardiologist I said to him I don’t know if my pain was related to heart or anxiety and his response was let me decide that and referred me for tests which showed blocked arteries. So there are good and bad as in every profession
Totally agree with you, I just saying my experience .I even went 1 noght to GP afterhours and she told me that I don’t have anxiety and that is what provokes my chest mild pain , but I have pain because and I know is something happening with me and seeing that I have to struggle to get a proper check,that is what provoking my anxiety. I just want to get a good doctor that will listen.
Hi, I know exactly what you are saying.... I had the tests in hospital with a cardiologist, I have coronary heart disease and angina. You are loaded up with your heart meds, statins, vit d and anxiety/ depression meds then that's it your left, no follow up, no further hosp tests. I just plod on hoping for the best with different health problems. Good luck with getting answers and getting the right treatment. Is there any way you can go back for tests and treatments if it's really good there, could be worth it, seriously.... It will be a long haul here to get anything done and follow ups through the years.Good luck again
I would second this recommendation, Razvan. A few years back, my cardiologist had discharged me and no one seemed to be able to advise me about treatment, I had a private video call appt with Dr Sanjay Gupta (cardiologist in York) and he was absolutely brilliant. He suggested things no one else had, and helped me the way forward. Worth his weight in gold!
I emailed him in advance the test results I could get hold of, and any letters I had, and he had read them ready for our appointment. So it’d be worth sending him a translation of that letter you have if you do see him. Even if you use one appointment just to explain and talk things through with him, he will be able to advise you on possible plans of action.
Really feel for you. Hope you get some good help from somewhere. Do let us know. Jx
Hi sorry to hear that you can't get the treatment you need. I live in Scotland and I have had a transplant, the care I get from my cardiology team is nothing short of amazing, my GP won't do anything heart related without a letter from them. On this forum we are not allowed to say names of doctors or consultant's. The hospital I attend is the Golden Jubilee at Clydebank it is a fantastic NHS hospital. I hope you manage to get the care you need. Char
I've heard really good things about the golden jubilee!! I had a double cabg at the Royal infirmary in Edinburgh in January. Its a post code thing and also where there is a bed!! I live in Kincardine so my hospital would be Edinburgh, only the jubilee if Edinburgh didn't have a bed. I'm so grateful.for having had my operation but the after care was not existent. No information on what to expect when I was discharged. I've had to find out myself each time I experienced something I didn't understand or was worrying me. My neighbour jad her operation at the jubilee and said the care was amazing. Different hospitals I guess
Ben Brown at Wythenshawe in Manchester and Ewen Shepherd at The Freeman in Newcastle.
My cardiac arrest was in 2011 and (in my case) I`ve been treated by both. Outstanding.
GPs know `a little about a lot` whereas cardiologists know `a lot about a little`. We have jokes at home about this `cos my daughter is a Consultant and her hubbie is a GP. Eek!
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