AIBU to ask if I should complain to NHS about this treatment?

[duckduckgoose14]

Hey, I hope this is okay to post. I’m just unsure what to do. I’m not trying to criticise the NHS or sound ungrateful, but I feel I’ve received quite rubbish treatment and I’m unsure whether to complain or if I’m just upset and it’s skewing my judgement.

I have heart rhythm issues and had several cardioversions and an ablation. They tried to do another ablation but couldn’t bring on the problem because I was on multiple IV antiarythmics the same day. After this, I felt like everything towards me completely changed and I was basically treated like a drama queen. I had doctors in the hospital tell me I was over dramatic, silly, anxious, stressed, hormonal etc when I was none of the above. Before I was even diagnosed I was told I was clearly mentally unwell and referred to a shrink when there was nothing wrong with my mental health. At one point I was discharged from
hospital with a heart rate of 190 and told to stop being anxious

recently I went to A&E really unwell with bad palpitations- I was dizzy, vomiting, and barely able to walk. I waited hours for triage, then was told my heart rate was low but that I seemed ‘fine’ so they would just monitor it. I told them I wasn’t fine, had to beg for anti sickness and the staff eventually just switched off the machine because my heart was beating at 30 and the machine kept beeping. After 10 hours of sweating it out they gave me medication to speed up my heart and I felt so much better. The next day, it was discovered I’d been in complete heart block the whole time, with pauses up to 6 seconds. I was initially told I might need a pacemaker, but thankfully cardiology later said I didn’t and after a few days it went back to normal.

They believed it was caused by my medication to control my heart and suggested I’d messed up the doses even though I told them I hadn’t. Don’t think they believed me anyway. Then they said some people’s bodies don’t break it down properly and it can build up and cause issues. I told them I’ve had these episodes even before medication and while I do believe the medication was aggravating it, it’s not causing it because I’ve had similar episodes even before the medication.

They stopped the medication and I feel so much better already, but the episodes still happen at times. At a recent review for the moniter in my chest, I was told nothing was wrong with my heart rhythm at the times I pressed the moniter. But I could see the computer said pause, 4s pause, PVCs etc at the same time i pressed it. I even cause it on my Apple watch which showed the same thing. But they just said it’s all really reassuring and normal

I feel like no one is listening or believing me. Does this sound like something worth complaining about, or am I being overly sensitive? Im trying not to sound like a victim but I can’t help feeling I’d be treated differently if I wasn’t a young woman. Should I request my records and go private, or contact PALS? Or complain to the hospital itself? I’m just not sure what to do and it’s hard to be objective because I’m frustrated but I’ve never complained before so it’s all completely new to me and I’m just worried it affects any future care. I’m also starting to worry in case maybe it is all in my head even though I know it’s not and I’m a massive drama queen! x

I actually meant to add as well- my cardiologist has been really nice, it’s just I rarely see him and when I called multiple times to pass on a message or request to speak to him etc nothing ever happened and I had to chase and chase for weeks. Really hard to get a hold of. And some of the other doctors and nurses I’ve come across have been fab, it’s just some of the other treatment I feel hasn’t been great

If you can afford it, absolutely go private. Once you’re settled with a specific treatment, go to the gp to let them know you’re now receiving the correct medication etc and to put everything on record, and maybe transfer your medication to the nhs. And do contact pals! It sounds awful. Write everything down, stick to the facts. Good luck

Slightly similar, I have arrythmia and suffer occasional very fast heart rates. Absolutely nothing to do with stress etc.

Once went to A&E with a heart rate close to 200, and they really couldn't be bothered. I was virtually hyperventiliating, dripping with sweat, etc. Eventually, after few hours, I was put onto a heart monitor machine. Then they gave me some IV drugs. If anything the heart rate increased.

A few more hours later I finally settled down and they just basically told me to go and see my GP. No referral to cardiology or anything else.

It took a few months (with a few other instances) but eventually got the cardiologist appointment who readily admitted the IV drugs given in A&E were wrong and wouldn't have solved the problem, and that it was just time that caused my heart rate to reduce again.

Lots of ECG, xrays and scans later, and they finally diagnosed me, gave me the right medication.

I think A&E are pretty poor at actually diagnosing things and are too quick to just fob you off back to your GP.

Absolutely complain as someone who has had a lot of dealings with the nhs and also had to have a mh assessment a few times for basically being an hysterical woman aka I won't keep my mouth shut when they put my life in danger. Its the only way things will change. Pals on the whole have been great when I have reached out.

Well I think what’s happened to the OP and bad bunny is fucking disgraceful. Your heart going mental is literally why we have A and E, it’s a fucking emergency.

and utterly terrifying. I do think there’s something in the fact you’re probably both women. When my father had angina attacks he was treated very differently (well!) to my mother who had an actual series of heart attacks diagnosed variously as indigestion, anxiety, being a woman

eventually she ended up having 3 valves bloody replaced while my dad died with a completely healthy heart

The NHS is a shitshow now. It has been for decades, but it’s even worse now. . If you’ve got a complaint, then complain.

If you do go private, Just be aware that not all GP’s will take over your care from some private practitioners, and double check the cost of private prescriptions I was shocked to find out that a medication prescribed by a private doctor cost over £700.

Ah, this is what I was worried about, that’s it’s too expensive. Or that they wouldn’t take on my care because it’s been quite a complex issue so far and they possibly wouldn’t want to get involved x

Could you afford to have a private consultation with your current NHS cardiologist? It would give you the space to discuss all your concerns and allow her to look at the bigger picture. If she wanted to do any investigations or changes to your meds it should be possible to do via the NHS as you’re an existing patient.

My experience with heart issues has been very different, GP picked up an issue. Do you have someone go in with you? I had a severe reaction to the heart med I was prescribed and ended up in A&E as couldn’t stop vomiting. Are you saying that some medical staff may treat those they think are mentally unwell differently? Because if that is the case then there is cause for complaint.

@duckduckgoose14 Definitely fire off an email to PALS & CC in your cardiologist’s secretary if you have their details. IME PALS are great at resolving issues such as these, but it also gives you the option to escalate if you need to (Letter to Chief Exec, etc). It might well be worth booking a private appointment with your cardiologist as this will give you time with them, & you can explain it without the rush of an NHS clinic. If your medical history / current situation is complex & tricky, you may find you’re better sticking with the NHS as most private clinics don’t have the facilities/staff if things go haywire.

Yanbu, I don’t have heart issues, but have been down the road of being dismissed as a hysterical woman when I actually had a serious health condition and the medical notes written saying I had anxiety (that I didn’t have) also didn’t help this loop of people blaming hormones etc.

if you don’t have insurance, private can get expensive quick, but it can be quite helpful, as a pp suggested maybe see if you can do an appt with your nhs cardiologist privately if he does private work.
i didn’t find pals helpful but it does seem a bit of a postcode lottery.

I had a private consultation which seemed to get my NHS team to take me seriously…just a copy letter sent to my consultant and although I was mortified at the time (expecting it to go to me / my GP).. he immediately agreed with the Private Professor in his field when I next saw my NHS Consultant …maybe for you OP a letter like that could be useful in A&E? Maybe even ask for it to be drafted that way?

Seeing him privately would be perfect but unfortunately he doesn’t seem to do any private work!

i think I’m just frustrated and fed up with it all and it’s when I look back with hindsight I actually realise how shit it’s all been

Oh @duckduckgoose14 that is frustrating! If you’d be happy to, does he have a trusted colleague who does do private work & works closely with him in the NHS? As part of the same team? This could be an option - you see Consultant 2 privately & then when they have a regular team meeting your case would be discussed? Or the colleague would then write to your consultant with his findings/recommendations & action could be taken? A bit long winded I appreciate! Sometimes it requires a little outside the box thinking when it comes to the NHS, sadly!!

Yes, that sounds awful. I would complain in your shoes. Are you an over 50 woman
by any chance? I think that increases your chances of being treated badly.

A GP sent me to A&E recently and I was treated there like a neurotic time waster. The nurse I saw shouted at me and she also told me my health problem was due to diabetes. I don’t have diabetes and if she had bothered to spend 5 seconds looking at my recent blood tests, she would have seen that I don’t even have prediabetes.

I wrote a letter of complaint to PALS about how the nurse had communicated with me. My crucial bit of advice, which I think is what made my complaint to be taken seriously, was that I also said what they had done well. So I said that the phlebotomist had gone out of his way to be warm and kind. The consultant in charge of A&E phoned me to apologize and he said he believed me. Hopefully the nurse I saw will now think twice about shouting at a patient.