I was diagnosed with Coronary Artery Spasm by a cardiologist in August 2018 after seven years of symptoms and having to fight for a referral. This was my second attempt at a referral. The first had ended in discharge following a clear myocardial perfusion scan and the advice that there was nothing wrong with me. The second ended in a diagnosis of exclusion with no further testing and discharge back to the care of my GP. I was assured by the cardiologist that this condition could be well managed in primary care.
The hospital had previously given me a GTN spray and the GP continued this and has done to date. This works well and generally symptoms are well controlled.
In May 2019, a locum GP prescribed triptans for migraine. Discrepancies between the doctor's instructions and those on the box sent me to the BNF and the information that these tablets were absolutely contraindicated! A phone call to the surgery revealed that my diagnosis had never been added to my record. I was told this would be rectified.
In March 2020, I was on high dose steroids and having episodes on a daily basis so asked for a referral back to the hospital. There I was assured that the escalation in my symptoms was nothing to do with the steroids. I was also told I needed to be on Diltiazem, which would have the added benefit of lowering my BP. As my BP is generally around 110/60, and often lower, I queried this and was advised to ask my GP for 24 hour BP monitoring so we could see how low it actually goes. The GP refused.
Since then there has been no interaction with the GP surgery at all other than my annual thyroid test and medication review.
I have recently discovered from their revamped website that the surgery runs a separate clinic for people with heart conditions. The website actually says that people who don't attend cannot be looked after safely and must find another doctor. As I have never been invited, I raised this with the pharmacist who was doing my recent medication review and she told me that I am not on 'the cardiac register'. She said she would speak to one of the doctors to see if I could be added, but I have heard no more. I cannot find out what this cardiac register is and what the criteria are for inclusion.
I'm now trying to get my ducks in a row before I try to speak to the Practice Manager. I have looked online, but can't see anything that defines what their obligations to me are, what they should be doing and whether there is anything I can quote when I speak to him.
Can anyone help please?
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AngelRain
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If I was in your situation I would ask your practice what heart conditions qualify you for inclusion in the heart clinic.You could also contact PALS to see if they can track down the letter your cardiologist would have written to your GP.
In my area there is a PALS for hospital matters, and another one for GP matters, but they would be a good starting point.
Your local Healthwatch could also offer some advice.
Thanks. That's helpful. I have the letter, which is unequivocal in terms of diagnosis, so if Healthwatch could tell me what obligations the surgery has not met, that would be ideal.
If you look up the contact details for your local PALS they should be able to give the details for the GP PALS. They used to be the same here, but tgen split. They are very useful.It might be worth having a look at the NICE guidelines for GPs, but if the local practice have decided to run a specific clinic I would assume they can make up their own rules about what heart conditions are appropriate.
I personally would be inclined to contact the practice in a friendly, casually enquiring way, asking them what hesrt conditions involve being included in the heart group. If they are a bit woolly just say you were concerned because of what is says on their website, and wanted to ensure you were doing all in your power to optimise your health.
I wouldn't be surprised to find the heart group concentrate on encouraging people to get their weight in a good range, exercise, follow a healthy diet, etc. All very good advice, wish someone had told me more when I first had a diagnosis of AF.
Two weeks on, I have contacted Healthwatch, who have no idea what this cardiac register is, and have referred my query to the ICB.I have heard nothing from the surgery and the blood test form I am waiting for is still not available.
In fact I decided it was better to have things documented, just in case. I have sent an email this afternoon, but they only check the inbox once a day and they don't reply by e mail, so your guess is as good as mine.
The response to my e mail to the practice manager was an e mail from the pharmacist saying that I would need to see a GP about my cardiac symptoms. I'm not sure need to as my symptoms are well controlled, but I have booked myself in anyway and will ask about this cardiac register.
So, I have now seen a GP. She tells me that the Heart Clinic run by the surgery is really for people with heart failure, but she has offered to make some inquiries for me. I don't quite understand why she did not know my diagnosis or why she did not at any point in the consultation ask me how I was, given that I have not seen a GP face to face for over four years.
I have now had a call back from the doctor. She has reviewed my notes and informs me that my type of angina doesn't tick the box and "doesn't come under cardiovascular risk because it is not ischaemic." So the end result of this is that they can check my cholesterol yearly, but that is all.
Pretty poor service I would say. Not sure what to do next as if this is a box ticking exercise, presumably all surgeries will say the same.
Vasospastic angina is a type of ischaemic heart disease due a functional disorder of the blood vessels, causing transient constrictions of the coronary arteries.
I live with vasospastic angina, I am on my GPs register of high risk heart patients.
The World Health Organization (WHO) is responsible for the International Classification of Diseases (ICD), which is a system of codes used to classify diseases, injuries, and causes of death.
The NHS uses WHO ICD codes to classify and record health conditions.
I suggest you ask the GP and Practice Manager to check the WHO ICD code 120.1 which lists angina pectoris with documented spasm as a type of ischaemic heart disease.
Also request them to update their knowledge by reading the European Society of Cardiology's 2024, Management of chronic coronary syndromes.
See section 5.2.
Vasospastic and microvascular angina are types of ischaemia/ angina non obstructive coronary arteries INOCA/ANOCA.
When I've had random tests before I've not had the full results, just total cholesterol, HDL and ratio. It feels like they are just paying lip service to something, but I'm no longer sure what.
My random cholesterol tests show: Total Cholesterol, HDL cholesterol, non-HDL cholesterol, LDL cholesterol, Total Cholesterol/ HDL ratio and triglycerides
Symptoms? I get a lot of low level chest pain not connected with exertion, some shortness of breath and then the totally unpredictable episodes of acute chest pain, which seem to come in clusters. The last of those hit me when I was sitting on a bus about ten days ago.
Well, I've seen the GP again. She still considers that an annual cholesterol test is sufficient monitoring, especially I suspect as the result came back a tad high and I now need to see a dietician, although the ultimate aim is clearly to get me on statins.
I have therefore asked to be referred back to a specific doctor in our local cardiology department, who has previously worked at the Royal Brompton and understands the condition. However, she says that they are not allowed to refer to a specific doctor and, if the pre-emptive ECG is clear, they may refuse the referral anyway.
After 13 years of not being taken seriously by anyone, I'm done. If I can't see him on the NHS, I will see him privately.
Your GP is incorrect. They are also not being entirely truthful with you.
I suggest you contact the Practice Manager or the local Integrated Care Board to raise your concerns.
Here is the Named clinician guidance – NHS e-Referral
"Patients can choose to be referred to a named consultant-led team or there may be genuine clinical reasons why a referrer may recommend referral to a specific clinical team. These include:
-referral to a consultant-led team known to have a particular specialist or sub-specialist interest in the patient’s condition
-referral back to a consultant-led team which previously managed a patient
-following an advice and guidance request where the patient has chosen to see the clinician that has provided the advice and guidance response"
So I had another episode about 2.00am this morning. After 3 sprays of GTN, I still had the pain, so we called 999 as instructed by the GP. When we have done this in the past, an ambulance arrived within minutes, the crew have done an ECG and sat with me until the pain subsided. This morning, there were no ambulances available.
I'll say that again. There were no ambulances available.
We were of course advised to go to A&E "if we could make your way there safely", but by the time I had recovered sufficiently from the GTN to be able to get out of bed, the pain had gone anyway.
I will see the consultant privately on 30 December. Frankly, it cannot come soon enough.
I had an ECG at the surgery this morning. I am assured that it was 'normal'.I have also received a letter about my referral, giving me the reference and password I need to book an appointment with cardiology. However, it seems that there are not actually any appointments available for the foreseeable future.
I am now three months in to this latest attempt to have my condition taken seriously and have still made no progress whatsoever. I am now pinning my hopes on the forthcoming private appointment.
So, the big day has arrived. Putting my papers together I find that an ECG carried out by paramedics in early 2018 showed a right ventricular conduction delay, which has never been mentioned to me and is of course now something else to worry about!
Worth every penny. I have learnt so much and had so much of what I have been told by other people completely debunked. Finally, I get to try some medication in a controlled manner, so I'm optimistic. Thank you for all the support on here.
I presume I will be able to move over to his NHS list in time, but will see him again at the end of March privately, which I am quite happy with. I have confidence in him.
He believes I am becoming resistant to GTN, so before the next appointment I will try the smallest possible dose of slow release Diltiazem while monitoring my blood pressure very carefully. If my systolic BP goes below 100 I will need to stop it and let him know. He is writing to the GP and asking them to prescribe.
He did roll his eyes at the way the GP practice has behaved and he certainly couldn't understand why they had not just referred me straight to him on the NHS!
The usual treatment for vasospastic angina is a calcium channel blocker such as Diltiazem.
I take a slow release version, Tildiem retard.
Becoming tolerant of nitrates is a potential problem though it tends to happen with long acting nitrates, rather than short acting GTN spray.
I have over 12 years managed to avoid this by staggering the times when I take isosorbide mononitrate, allowing a nitrate free period of at least 8 hours every 24 hours.
I can't afford to become tolerant as I need an IV GTN infusion to stabilise my unstable episodes of coronary vasospasms.
Your blood pressure usually drops following exercise. Your blood pressure rises and falls during 24 hours. Falling over night then rising again in the morning.
People with vasospastic angina are also less tolerant of exercise earlier in the day.
My Cardiologist's advice, when I had to monitor my blood pressure, was to take it at the same time, in the early evening. To take two readings and record the second reading.
Blood pressure UK has some useful advice about how to take your blood pressure.
So here we are. It will be two weeks on Monday since I saw the consultant privately and I still don't have the Diltiazem. I sent the consultant's letter in to the surgery by e mail on 2 January, but they appear to have ignored it! They have now had a copy in the post and have started to action it, but apparently I have to have a conversation with the Clinical Pharmacist before the request goes to a doctor for the prescription to be written. They cannot give me a timescale for this.
In the meantime of course the weather is very cold and my life goes on, although of course I am now in daily fear of another episode.
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