Follow up appointments.

[Anniegran]

Hello, it's just over a year since my husband's heart attack. He had three stents fitted. It concerns me that he's had just one visit from a nurse who talked about diet, exercise and one hospital check-over (where they did nothing other than ask did he feel ok) a few weeks after the op. Is it normal for him not to have been called in for a yearly check up? We both feel like he was simply "dumped" after the op. He's on several meds and apart from getting tired seems ok. Do patients who've had stents fitted not get checked over regularly to make sure everything is working as it should be and still in place? Or am I just worrying too much? Thank you in advance for any replies/advice.

[Midgeymoo17]

Sorry just posting as really interested in the answer to this question.

Recently admitted and all the advice given by the Advanced Nurse Practitioners (trained in cardiac surgery/ coronary artery disease) suggested that one was treated then discharged to be followed up by the GP and if any issue in the 6 weeks after surgery contact your GP . i.e.:Treat and ship you on.

I am a bit special, although the APN's were very good they were not paediatric trained and neither are GP's, so my consultant came to see me personally and explained the discharge instructions on the standard letter did not apply- if I had an issue I was to contact the congenital heart nurses not my GP, that my annual follow up will recommence (might be reduced to bi-annual for a while whilst my valve is not leaking but would continue) etc. But I did get the impression that acquired heart disease patients at my hospital were sent back to their GP. The only thing was to get my GP to repeat bloods and stitches out. {actually the hysteria over being a congenital heart was ridiculous you would think their was a foul smell coming from my bed the way the APN's would treat everyone else but would immediately ring the on-call reg for me}.

Sorry not very helpful just posting as I am interested in peoples experiences.

[skid112 Heart Star]

hi,

there was a reply from one of the BHF nurses previously on this, you can find it here healthunlocked.com/bhf/post...

but in a nutshell no, there is little in the way of follow ups it would seem. I make regular appointments at my GPs, to discuss medication, follow ups and generally annoy the receptionists. Feel free to ask any questions on here you have, any concerns as there are many who have valuable feedback, experiences and we are all here to learn and if we can to help

[Anniegran in reply to skid112]

Thank you. X

[Anniegran in reply to skid112]

Thank you, reading on that post it seems everyone is in the same boat other than one lady who is pregnant and that could be the reason she's seen a bit more often. Interesting.. xx

[Marc68]

Hi Annie. There are a few times during the whole process that you might feel like you've been "dumped". I can certainly relate to it as I'm sure others can, although I have recently had a letter from the hospital for a one year ECG so they do review patient care post op.

I can't comment on your situation as we're all different, different meds etc but as a minimum I'd arrange tests with your GP for liver and kidney function, and for cholesterol levels. When you go and see him about the results tell him you want to talk about your meds, and also discuss any need for a follow up ECG or other tests in hospital. A year is an important milestone (in my head at least) and I'm sure it would help you both to get things clear before moving on.

I'll start off by clarifying that this isn't a dig at the healthcare professionals but my examples are just to highlight the points. The ambulance, hospital staff and nurses saved my life and were largely excellent in their care, but there were a couple of times I spotted a disconnect between treatments/phases, which cause unnecessary problems for the patients. These could easily be avoided with just small changes in the processes.

Once you leave rehab you usually have to go through your GP to access a cardiologist, if he doesn't ask to see you at that point. I was (still am) very disappointed with that as my cardiologist didn't feel he needed to see me, but I wanted to see him about some conflicting information he had given. He told me in the Cath Lab, when asked, that another artery had a "very minor" blockage, so small that there was no need for further action and that lifestyle changes would sort it out, but in his written report to the cardiac team he called it "severe"! When it comes to your heart, that difference is as far apart as life and death to a layman. I still don't know which it is, which undermines all the confidence gained in rehab. I'm supposed to just live with this spurious information and it weighs heavy. Such conflicting advice just adds to the mental stress we all go through, which is completely counterproductive.

Once you leave rehab, it is then up to you to arrange GP visits, ask for tests, appointments to discuss meds, etc.. pretty much everything is down to you to arrange. The GP won't contact you. The trouble with that is unless you are told, how are you supposed to know, and how are you supposed to know what tests you have to ask for? I had tests for liver and kidney function at the GP's but they didn't test for cholesterol or blood sugar levels at the same time! I had to then ask for those tests. I'm on statins so why isn't a cholesterol test arranged as standard from the same blood sample? It makes no sense. More stress! My profession demands attention to detail so I made it my business to research what tests etc I should ask for but others may not be as inclined or able to do that, which leads to more concerns about whether something should be being done that you simply don't know about.. yet more unknowns and hence more stress. (You might be able to see where I'm going with this.)

Another, related, problem is that the level of care and/or experience provided between different GP's varies wildly and some actively discourage patient engagement. I was told by one GP not to get involved as "you don't understand what you're looking at". He was right to an extent, I'm no medical professional, but I can read so when the test results are outside of the allowable limits (as written right next to the result figures) it clearly indicates a potential problem... not according to my GP though! Again, spurious information, and yet more stress. I'm still at a loss as to how patients are supposed to arrange tests etc if they're not engaged in the process.. the GP's don't do it so where does that leave anyone? Actually, it's just dawned on me that it leaves patients exactly where you are now, feeling isolated and on forums asking for advice.

A bit further down the line I've come to realise that although it might feel safe to be under constant review and direct care of the healthcare professionals, you need to be independant and take control of your own care, and thus allow you to get on with your life. It would just be helpful if it was made clear what we need to do.

Sorry for how long that was and if it comes across as a rant. It honestly isn't, but this problem keeps cropping up for a lot of us it seems and is avoidable.

[Anniegran in reply to Marc68]

Thank you Marc, no not at all a rant! In fact very interesting that others are having much the same thoughts and feelings. I absolutely agree about the year being a milestone. I'm disappointed that although we know we can contact our gp, and hubby has had bloods done, it would have been more comforting to have been called in by the experts. Maybe we're all not pushy enough! Thank you for your response x

[NathanBlau in reply to Marc68]

Hi

At risk of striking a discordant note I think you are expecting way more of the NHS and the cardiologist than we should reasonably expect. Apologies if that appears a little blunt but we both appear to have been well served by a hard pressed service.

I assume that you must have visited the cardiology clinic sometime between the incident and discharge to the care of your GP? Isn't this the point at which you discuss your particular situation and questions? If the cardiologist evaluated that you did not need further personal consultation I would see that as a real bonus and be happy that his skills were positively deployed elsewhere - who knows, he could maybe save someone elses life rather than do work that he/she may not see as a priority?

I am at a loss to understand why you think that you are left to arrange tests if indeed they are indicated by your particular condition. Your GP is aware of your position and would arrange tests appropriate to you personally; my discharge letter indicated what follow up was suggested by the hospital and these were arranged without me prompting action - no idea why I should be prompting liver or kidney function tests for example!

[Marc68 in reply to NathanBlau]

That's an interesting post Nathan but your experiences are very different to mine it seems. I never got the chance to talk to the cardiologist after the stents were fitted, then when I took the discharge letter to the GP he read it and his first words to me were "What do you want me to do?". I had to explain that he'd just read the letter and that it was written down for him! The first kidney and liver function tests were arranged by him at that point, but not cholesterol or blood sugar levels. I discussed going forward with the rehab nurses and they told me GP's don't automatically arrange tests or suchlike any longer and that after the initial tests it's down to the patient.

When the dosage of the meds are changed I arrange further liver & kidney function tests as I'm concerned about possible damage being caused. I'm certainly not waiting a year to find out as it could then be irreversible. The last GP I saw a few weeks ago increased the dose of ramipril again and arranged the tests so perhaps that is how it should be, but that's not what the previous two GP's in the same practice have done. That's the problem, there's no consistency. Incidentally, the initial GP above also told me only the cardiologist can change the dosage of the meds, whereas the cardiac nurses told me that it's down to the GP, which is how I understood it after reading BHF information. There are too many such discrepancies for my liking. I appreciate the NHS is under immense pressure, and sympathise completely, but GP's not understanding and giving incorrect advice about basic procedure shouldn't happen imho. We're not talking about a common cold, bad advice could potentially be life changing.

The variation in GP care we all receive is apparent. Great if you get a good one, not so much if you don't. As patients I think we all need to be engaged in our own care. It doesn't need to be much, but keeping check on meds and tests is the minimum for me.

Hope things are well with you.

[NathanBlau in reply to Marc68]

All good Marc. Cycling increasing distances and passed fitness test to resume scuba diving - albeit to limited depths.

Rugby out of the question but thats more to do with being 64 and having less than reliable knees lol

[Marc68 in reply to NathanBlau]

Good stuff mate. Glad you're able to carry on with scuba diving.. I've always fancied that myself but other things take all my time.

Yeah, rugby was over for me a long time ago... crushed vertebrae in my spine saw to that. Also a knee injury, and a torn groin that still goes every so often! Not sure I'd want to play again tbh! lol

[Geoff51 Heart Star]

Since my heart attack 7 years ago I had of course 6 weeks of Cardiac Rehab within a few weeks of discharge from hospital. Every year I get a nurse led cardiac clinic at my GP surgery. It consists of a blood test about a week before hand, luckily at the surgery, then a check over by the nurse usually blood pressure, pulse, weight and BM and diabetic check from the blood test. The nurse then inquires as to any problems over the last year and if she thinks it is needed you are referred to the GP for follow up if your medicines need adjustment or you have had issues during the previous year. If you are not getting this minimum of support I think you need to chase up your GP to get it, as you may have been missed off of this type of clinic, if you are told they dont do this then you need to make a fuss because it is the basic post heart attack care.

[Anniegran in reply to Geoff51]

Thank you Geoff x

[NathanBlau]

HI

I had 3 stents last November and had the scheduled followups at the hospital but in the absence of any 'issues' arising I only saw cardiac nursing staff and was effectively 'signed off' after 6 months.

I see this is a real positive, and certainly not a sign that I have been 'dumped'. If your husband exhibits no residual issues then I would personally be delighted and not worry about a need for regular interventions.

I really do empathise with the need for reassurance, but I genuinely find this in the fact that the hospital are confident to now discharge me. I am now under the care of GP practice only and will, I understand, have annual blood test and review of meds.

[Anniegran in reply to NathanBlau]

Hi Nathan, thank you, that's reassuring. I think I'm worrying more than my husband! You're all very kind to take the time to reply. Best wishes for your future. X

[NathanBlau in reply to Anniegran]

Hi

I agree that its maybe harder for my family to come to terms with and not wrap me in cotton wool for the foreseeable future! I had no intention to diminish your concerns because it is natural to worry about your loved ones!

Sincerest best wishes to you too.

[Marc68 in reply to NathanBlau]

I agree with Nathan. If the cardiologist doesn't feel the need to see you, or your husband should I say, then that's a good thing as it means you are most likely classed as low risk. I only wanted to see him because of the discrepancy I mentioned.

[dandydemon]

Hi, afraid we are with marc68 on this. Husband had heart attack, one stent fitted, discharged after 3 days, superb care. We made gp appointment, took 3 weeks to get, he hadn't read discharge notes and asked why he was there. Gp more concerned with getting him back to work than how he was. No blood tests ordered. Chased rehab, saw cardiac nurse who got bloods done. No one has measured his bp or asked how he feels. No gp apps available, so next app was telephone consult just for fit note! Rehab starts next week so see how that goes. It does feel a little like he has been dumped, and he is stressing about getting fit notes, stress he doesn't need. On the positive side, he has survived something a lot of people don't and for that we are truly grateful. Early days yet - six short weeks - at least I have stopped texting him every 5 minutes from work now! I think you do have to take responsibility for your own recovery and if that means chasing appointments, questioning your gp, so be it. For all the partners out there, worrying, working, I feel for you, and it does catch up with you after a while. Stay strong by all means, but feel free to rant, cry, get irritated, eat chocolate, but mainly look after and be nice to yourself.

[skid112 Heart Star]

I think this thread is truly enlightening as to the differences between various GPs and the aftercare. My own seems to be learning on the job, initially a little disconcerting for him to be Googling symptoms and side effects whilst I am sat there but latest appointment was full check on medications, reduction in one, follow up blood and liver function tests. I'd echo the advice from Dandydemon (great names here too) stay strong and rant with an addition, you are in a strong position as regards getting appointments and pushing receptionists to grant you an appointment (I have an innate dislike of some doctor receptionists I have come across, sorry for all of those out there who do such a thankless job with a smile and a helpful attitude out there).

Great weekend to all, I hope the sun shines on all of you

[Marc68]

Morning Mark. It sounds like your GP has worked hard to get to a point that I think we'd all be happy with, so much kudos to him for that. For the most part the receptionists at my GP's are pretty good, once you get through on the phone, and as you say, as soon as you mention heart attack they try hard to get you in as soon as possible.

I think it's important to have confidence in your GP, as it lays alongside your own personal confidence that we all work so hard to achieve and maintain, and which hangs precariously by a thread on a daily basis. Lack of GP knowledge and/or engagement breaks that thread and leaves us guessing and stressing, and taking backwards steps.

Hope you have a nice weekend too mate... the sun has already shone on me more than I probably deserve.

[mullicub]

Hi. My husband had a Heart Attack in December 2015 and angioplasty with 3 stents fitted. He completed rehab but was given no follow up appointments with cardiology after discharge from hospital. 15 months on (March 2017) he had a further heart attack and two more stents. This time we questioned the follow up and he was told he would have follow up appt with cardiologist at 3 months post surgery. I am still chasing for this appointment and have been told that cardiology has a huge back log and they are still booking appointments due last year so he will not be getting an appointment any time soon. He has been back to the GP as he feels he is suffering some new symptoms which may be heart related and they have tried to speed up the cardiology appt but we are still waiting.

Its all a bit scary really!!

[mullicub]

Just wanted to follow on from my earlier post and see if anyone has any advice. After badgering the GP & hospital my husband finally had an appointment with the Cardiologist in October 2017 who changed which blood thinner he is taking and again signed him off as needing no follow up.

He has now been on clopidogrel for three months and if anything his health is deteriorating. My formally fit and active 57 year old husband (he was kayaking when he had his last heart attack) is now unable to walk for more than a few minutes without breathlessness and the need to rest. He is due to stop the blood thinners altogether in March (12 months from last MI) but is very concerned as it was just weeks after stopping them last time that he suffered a second MI.

He was told after the last angioplasty that he had got away with very little damage to his heart although they said he does have another partial blockage.

Meanwhile a work colleague of mine who had a single stent (no heart attack) 5 years ago under a different hospital continues to have follow up appointments every 6 months with his cardiologist although he has been symptom free ever since his procedure.

It seems it depends on your area as to how much follow up you receive.

[jobe1968]

My experience

Only six weeks since my heart attack. It came out of the blue although with my weight and drinking habits I should have expected some health problems.

My experience in Manchester was positive in that the ambulance crew and medical team did a fantastic job in getting me into hospital for treatment.

My STEMI was treated at MRI within minutes of arrival. And the post surgical treatment good apart from the food offered. Fish and chips or white toast and butter the next day! Contract service now all the non clinical services.

Nurses were great and the consultants explained what had occurred. Only one was a little Lancelot Spratt like!!

After an echo test I was advised a discharge ejection fraction of 40% and the consultant next day after looking at my notes advised me to expect “moderate” heart damage.

Was then sent two weeks later for a rubidian CT scan on a Saturday. Nurse and technicians very good.

Waited a couple of weeks for the results one of which was positive in that my Ejection fraction was now at 62%. It did also give information regarding my condition in medical terminology I could not understand. My GP read the letter with me and explained what he could.

Also referred to a lipids specialist at MRI due to cholesterol levels. This doctor was extremely understanding and took time to really examine me and discuss the issues.

My GP has been great and seen me a fair few times explained what I did not understand and kept an eye on the drug titration via blood tests etc.

Rehab has been short and beneficial as I am working again after Monday away from home ! Rehab support is offered also via phone and email. Fortunately working in a place with good health services.

However the team at Trafford general got me straight into physio and due to my motivation to return to normal as quickly as I could arranged that I could attend three sessions a week. X2 guided exercise and x1 education.

I read from day one and have been proactive as far as I can. The medical service provided by the NHS has been excellent. However it’s my condition so while I think I had good treatment, as a patients I need to educate myself and push for the best care possible.

I don’t agree anybody should accept no follow up. Fortunately this is not my experience.

My view is if your concerned approach your GP it is his job to push the system for you.

Finally I wish to thank MRI and my GP Tom at Urmston group practice for all my care. And the rehab team at Trafford general. ( The first hospital incorporated into the NHS).

Mike