Hi everyone, I hope you are all doing ok this festive season.
I was diagnosed with extensive microvascular disease using an angiogram and pressure test in early November. I went for a follow up appointment with the cardiac nurse a month later. The only time I have seen a dr or consultant was whilst still in the catheter suite and I was still sedated when he told me the result. When I saw the cardiac nurse unsurprisingly, I had a number of questions. She told me I needed to speak to the consultant to get the answers. I asked when I would get to see him and she said that I wouldn’t 🤔! A few days later I was told the consultant would be prepared to see me in clinic, but there would be a 5 month wait. Imagine my surprise and delight when today I received an appointment through the post for February. It was only when I went to enter the date in my diary that I realised it’s for February 2024!!! I don’t know whether to laugh, cry or scream. It feels like my only option is to pay for a private consultation, which at 69 and living on a pension will be a bit of a stretch. OK for a one off but out of the question if any further tests are needed.
Sorry for the rant, but I know you will all know how I’m feeling.
Written by
Wanderinglady
To view profiles and participate in discussions please or .
Rant away, I know how you feel. It seems the NHS is broken and I'm not sure it's going to get any better.I had a heart attack just over a year ago and still waiting to see a cardiologist, despite ringing a few times to his secretary. I was told it could be another year yet before I see him.
Also I was referred by my doctor because of chest pain to the 'rapid access chest pain clinic ' (!!) on a 2 week referral. That was in April and I'm still waiting. It really is appalling.
Wishing you a very happy New Year.
Lily
Hello
Well I have been reading and listening to the news how things are been delayed and people are having to wait but till 2024 !
You must have felt in total shock reading that and I have to admit I am thinking have they made a mistake when writing the letter and put the wrong year in
When they are back next week I would phone and ask that question is this right my appointment is not till 2024 , if they say yes then I would say I am sorry I know there is a backlog regarding appointments but I really need to be seen before 2024 and I would like you to look into this
I hope you get somewhere with it and wish you luck as well as if you have time let us know how you get on x
Thank you for your sound advice. I had wondered if it is an error, although I’ve waited 3 years+ for spinal surgery, so I won’t be totally surprised if they do mean 2024 😢. I will phone next week to check it out. When I requested to see a consultant I was left with the distinct impression that they felt I was asking for something unreasonable. I will certainly let you know the outcome of my enquiry.
it’s not unreasonable at all. When I had two mini strokes was to get 3dayhearttrace to rule out atrial fibrillation from hole in heart that could cause more stokes and normally you get it within two weeks of the event I had to wait a year and 11months to get it. Luckily in that time I didn’t have any more TIAs. Even going private now instead of being seen within 48hours (as they say on their websites) to a week to be seen, where I live there’s three to four month waits for initial cardio, respiratory etc. 🤦♀️ . GP surgeries in my local authority now only taking emergency appts, no routine, due to being swamped with covid strep a and respiratory infections till further notice. And a&e full to capacity that they’re having to see people outside. It’s an absolute nightmare to be unwell just now. Yet majority of people with no health problems atm have no idea how bad it is. I would phone up ask to be put on waiting list for cancellation and keep phoning them each week
I’m sorry to read of your experience and just wanted to say if there is a department number maybe call and ask whether there is another consultant with sooner availability who may be able to support you?
I sincerely hope that it’s a typo on the letter and this gets resolved quickly for you 🤞🏼
Yeah go for it we all know you feel I got my appointment through few days after I'd had one in November for November 2023 a year later I know that doesn't seem like a long time but to see an actual consultant in person it is. I really feel for you though that's absolutely ridiculous 2024! That's crazy why so long cant they send you a letter or phone you tell you how they feel your relsuts are and if there are any concerns can't believe that so sorry for you 💔
hi I paid to see the cardiologist who diagnosed my microvascular disease as I feel I'm getting worse, first thing he said to me was " its clearly not cardiac" 😫😫😫lol, he then asked me to do a treadmill test which showed ecg etc was all over the place, he then said my condition is getting worse, my issue is, I realised that he was able to do the provocative angiogram but he doesn't actually know about mircovascular disease, I will not be wasting my money on him again, hopefully your cardiologist will know about mircovascular disease. Go on Facebook group for mircovascular disease as its it's an excellent place for support as is this one x lucky my doctors dad has mircovascular disease so at least she understands what I'm going through ❤❤❤
There are several Facebook groups supporting people with microvascular and vasospastic angina. There is a link to group in this BHF article. bhf.org.uk/informationsuppo....
Also this website which was created by 4 patients with over 50 years combined experience of living with the conditions.
They are supported by 30 world leading Cardiologists.
I first saw the cardiologist 9 months after diagnosis, was told I'd be seen again in 3 months which would have been August/September. When I started chasing that appointment in December I was told it would be "in the spring."
I'm afraid it's the norm for many specialities in my area, i.e, 270 days for a first appointment at the pain clinic. In fairness 2 other first appointments came through far more quickly than I anticipated, shame the follow up is the same pattern as cardiology.
I live with another type of non obstructive coronary artery disease NOCAD, vasospastic angina.
I suggest you contact the Patient Advisory Liaison Service PALS of the hospital concerned and ask to be referred to a Cardiologist who understands microvascular and vasospastic angina.
Microvascular and vasospastic are poorly understood conditions, often overlooked and not considered to be serious heart conditions that require the regular input from a Cardiologist.
The BHF has this information about microvascular angina.
I'm so sorry you have been cast adrift. From my own experience of being diagnosed with microvascular dysfunction it's precisely in the early days following diagnosis when you need the most support. It took some months to get the right mix of medication for me. Microvascular dysfunction is one of those conditions where there is no "one size fits all" regimen and it can be a challenge to find the combination of drugs which suits the individual. If you are in the UK I wonder if your GP can help you with your questions. The hospital should have written a discharge letter to the GP (you should have been given a copy) and it may be possible that you can follow up via that route. Also if you want more information you could ask the hospital to see your medical records.
I'm a member of a Facebook Group "Microvascular Angina, Coronary Artery Spasms (Vasospastic) and CMVD Community. Obviously we are not medically trained but it's a great forum where everybody pitches in with their own experience and can offer support.
you might also want to take a look at the website for INOCA International inocainternational.com/
In my experience as a health professional and as a patient, Consultants, (whose expertise is in treatment and diagnosis) usually know little about the day-to-day reality of living with the conditions they treat. Clinical Nurse Specialists can be more helpful but, when you have an unusual or poorly understood condition, the individual experience and understanding of others who live with a condition offers a completely different range of information and support. Online communities are often an excellent way to access such support, so do take a look at some😀
Don't I wish we had Clinical Nurse Specialists to provide care for those of us living with microvascular and vasospastic angina. Unfortunately I am not sure that the knowledge is there yet.The Lead Cardiology Nurse had to look up Vasospastic angina when she first met me a few years ago.
We have some very specific needs as patients.
Unfortunately there are still no agreed definitions, testing protocols or treatment plans for us .
There is no one size fits all. We all seem to have our own individual presentation of our variety of angina without blocked coronary arteries ANOCA.
I am fortunate that I have an empathetic Cardiologist.
I co wrote my careplan with him and the Pain Management Team to guide the staff how to care for me when I am admitted.
I carry a copy of my careplan with me at all times, there is a copy in the Cardiology Ward Manager's office and my plan is on the hospital's electronic patient records system.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update/Good news
my 1st hospital appointment experience after my heart attack
Unexpected reason for gp appointment 
Going to the dentist after heart attack
Appointment with A Fib Nurse
