How do I get better care? : I have... - British Heart Fou...

British Heart Foundation
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How do I get better care?

MyAbu
MyAbu

I have coronary artery disease strong family history - high cholesterol- had 3 stents put in 2017 in a midland hospital after which I felt excruciating constant pain like somebody was turning a knife in my chest - in the hospital I was given paracetamol for the pain and nothing else I would sleep for an hour or so then get up with acute pain again - I was told that it was not heart related - the pain was helped only by Tramadol morphine based pain relief. I have a suspicion that some thing went wrong during the angioplasty but the hospital refused to release any tapes or footage which I could have sent to cardiologists in the US for another opinion. For

6 months after the stenting I would get extremely uncomfortable ache in my shoulders and middle of the shoulders. GTN spray did not help only morphine based co codomol gave relief. Ultimately cardiac rehab and exercise helped. Now I am getting chest pain at rest again and feel utterly drained around 4 pm having an early 5:30 start to a commute and work day. My work is mostly sedentary with long hours at the screen.

Reading all the posts here makes me think that either I live in the wrong post code or I am doing something wrong. I get the sense that you all are getting better quality of care - I get this sense of being fobbed off, of being told that I am worrying unnecessarily- that I have the GTN spray I should use it when I feel chest pain and get on with my life and not bother anyone. The GP sends me to hospital every time I mention chest pain which the doctors in A&E have repeatedly told me is most likely musculoskeletal because the troponin blood test on each visit to the hospital come out normal and the ECG too. It’s been a year since I saw the consultant. I am so confused and fed up at the lack of any investigations to find out the state of my condition that I just want to give up.

12 Replies
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Milkfairy
MilkfairyHeart Star

Hi MyAbu,

Has anyone suggested microvascular disease?

You may find this information helpful.

Perhaps printout the BHF information about Microvascular angina and take it to your GP and ask to be referred to a Cardiologist who has some knowledge of the condition.

Microvascular and vasospastic angina are not well recognised or understood conditions and often overlooked as a possible cause of angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

The European society of Cardiology just published these guidelines regarding Chronic coronary syndromes

It's a big read but everyone knows I am a bit of a research geek.

escardio.org/Guidelines/Cli...

MyAbu
MyAbu in reply to Milkfairy

Thank you very much - I like to research too myself - I will read this

Hi MyAbu

When I decided to request a copy of my hospital medical records I sent an email to Patient Advice Liaison Service (PALS) at the hospital I had my angiogram. You can get the email by searching on your hospital website page. PALS were really helpful and sent me a copy of the request form and also advised me of the address of the Medical Records Office where the form should be sent. The form is fairly straightforward to complete and I remember stating I wanted the request to include a copy of my angiogram and echo etc. Within 4 weeks I received by post a copy of all of my records including a CD of angiogram and echo. PALS will help you if you have any difficulty filling in the form. I have attached a couple of links about requesting medical records. nhs.uk/common-health-questi...

It's frustrating for you to continue to feel unwell and unfortunately you are unlikely to achieve an early NHS appt with a Cardiologist - have you asked to see Cardiologist again? Another option is to get a private consultation if your financial situation will allow this. If you go down this route I suggest you request copies of your NHS records to take to private consultation.

What needs are you on as beta blockers are notorious at causing you to feel tired so a medication review could be helpful as well.

MyAbu
MyAbu in reply to Nathan53

Thank you Nathan53, yes I did request my consultant for the CD and my GP too both were very reluctant - i even wrote an email to some authority who never responded. Thanks for the link for PALS though I will pursue it - I wonder if they would have the records from 2 years ago now. It was the angioplasty that I wanted records of - my consultant explained the excruciating pain afterwards as to we don’t know what all happens when invasive interventions are done - some small arteries may get perforated - I had a follow up angioplasty two months later to check if the stents were patent, and those were fine - and the second consultants who performed the angioplasty made this remark that your symptoms don’t seem to have improved at all have they? In fact that was true they hadn’t - from my own research I felt I may have prinzmetal or micro vascular disease but none of the doctors pursued this line of inquiry - except now a young new GP has given me Amlopidine 5mg, this seems to be helping so far but I haven’t been to the gym yet! Surprisingly I only get mild chest discomfort when exercising or walking very fast or for standing for long time. Could this be because I am also diabetic?

Milkfairy
MilkfairyHeart Star in reply to MyAbu

Hi MyAbu

By law you must be sent your notes and any results.

As Nathan53 says the best starting place is PALS .

I have lived with Microvascular and vasospastic angina new term for Printzmetal angina/ Coronary artery spasms for 7 years so give me a shout if you need anymore information.

It took me a while to get my diagnosis and treatment mainly due to the lack of knowledge about these conditions in the Cardiology world.

Nathan53
Nathan53 in reply to MyAbu

Hello MyAbu - your medical records will be available for much longer than 2 years. The Consultant won't be involved in your request it will be the Medical Records Officer that collates the information. In my experience requesting something from the Consultant or GP rarely produces the goods. I think you will find that many with Microvascular and Vasospastic angina often experience angina at rest. Great links and advice from Milkfairy. I remember you saying you had a sedentary job and often it is very stressful to sit in front of a screen for hours especially if other parts of your job are boring or stressful. Are you able to take a walk at lunch or break to up your physical activity or after work. I know it may be the last thing you want to do but it can help.

When they say "musculoskeletal" don't they elaborate? Which muscles and bones do they mean?

MyAbu
MyAbu in reply to jimmyq

No they don’t, the pain is always on the left below my shoulder and then in the shoulders at the back - I want them to investigate this - why do I get pain only in one side is there an imbalance in my spine of what, but nobody appears to pursue this further.

jimmyq
jimmyq in reply to MyAbu

Try some gentle stretches and see if they help.

you could give Shibashi a try. You don't have to go out, it's very gentle and easy to learn. It takes about 20 minutes. Just follow the video: youtube.com/watch?reload=9&... Until I got a Fire Stick, I played it on YouTube via Google on my PC and "cast" it to the TV in the lounge to follow it. "Trust Me I'm A Doctor" found that it gave a good workout without strain or pain. My tutor says it can be done every day.

Hidden
Hidden

Hi MyAbu,

I’m in the same boat as you. I had a stent put in and have never been the same since.

I was told by a Consultant cardiologist that potentially it could be nerve damage, apparently, this can happen during the procedure. But I would also check out what Milky said as well.

MyAbu
MyAbu in reply to Hidden

I am reading the book ‘ invisible women ‘ and the author talks about the gender data gap and especially mentions heart disease and women - I understand there is a sub speciality emerging in cardiology and s body of evidence is slowly being collected which addresses heart disease in women

Milkfairy
MilkfairyHeart Star in reply to MyAbu

Great book.

Have you seen the BHF have started a campaign about how woman have a higher mortality and don't receive the same recommended treatment as men.

Prof Chris Gale at Leeds has done a lot of work in this area.

bhf.org.uk/what-we-do/news-...

I also suggest looking up Prof Nick Mills from Edinburgh 's latest research too.

sciencedaily.com/releases/2...

There is a growing awarenes of an unconscious bias.

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