AIBU to make a formal complaint about this?

[Hottt]

Last June, I suddenly fell ill and an ambulance was called. For the record, I'm mid-20s, previously healthy, healthy weight, non-smoker, I don't drink - nothing that should indicate any likelihood of falling ill, and nothing I can change to improve my health without medical support/input. I even ran a marathon less than a year earlier. I had an abnormal ECG when the paramedics arrived and I was taken to hospital. I spent two weeks in hospital, very unwell but with nothing actually done. I was discharged with a cardiology referral. Since then, I've had strange cardiac episodes that I'd never, ever had before. These tend to involve my heart rate shooting up (c.200bpm) and my blood pressure either shooting up too or dropping really low (to the point that I pass out). It's accompanied by severe chest pain and breathlessness. Sometimes these will happen multiple times in a day and sometimes I'll go a few weeks without one. There's no pattern or trigger that I can determine (no associated foods or activities, different times of the day, no issue with sleep, no correlation with blood sugar levels etc). Not to sound dramatic but I'm scared that I'm going to die.

Here's my AIBU, the cardiology department have been completely non-existent (to the point that I'm unsure if they even exist) and I feel like I should make a complaint, but I know the NHS is under strain and don't want to be that person.

From June through to December, I was waiting for my cardiology referral. My initial letter (the only letter I've received) said there would be a 26-30 week wait. My GP said that cardiology referrals often "slip through the net" so that I should make sure I chase it and a paramedic that came out said that "with cardiology, the squeaky wheel gets the oil" so I phoned a few times after June to check the status of my referral. No one answered the phone on any occasion that I phoned and no one returned my calls when I left a voicemail.

• At the start of December, my GP expedited my referral to a two week wait. After two weeks with nothing from cardiology, I began phoning. As above, no answer and no returned calls.
• At the start of January, I contacted PALS, who contacted cardiology and said that cardiology didn't have my expedited referral and I'm still on the standard waiting list. I phoned my GP who re-issused the expedited referral.
• At the start of February, with still no ability to contact cardiology directly (no email address, not allowed to go in person due to Covid and no one answering the phone), I contacted PALS again. Again, I was told they hadn't received an expedited referral. So, I spoke to my GP again and they made the referral again. At this point, I don't know whether the GP is messing up or the cardiology department is messing up.
• Two weeks later (mid-February), I've still heard nothing from cardiology (and still no one answering the phone or returning calls) so I contact PALS again. I get the same response that cardiology have not received my expedited referral. I contact my GP who sends an email which shows the referral was made and cc's in me and PALS. Within two hours, PALS responded that cardiology have now located my expedited referral (how convenient).
• In mid-March, I was sent a letter with an appointment at the end of May.
• A week before the appointment, my appointment was cancelled "due to Covid". Since then, I've been on the expedited referral waiting list. Cardiology have never, ever answered their phone - I've tried different times of day, going through the switchboard, phoning the number directly etc - they will not answer, and they never, ever return the call when I leave a message.
• Two weeks ago, PALS went from saying that I just need to keep waiting to saying that I'm no longer on the expedited waiting list and I'm back on the standard waiting list (this hadn't been communicated to me or to my GP). When I asked why, PALS said that a consultant had made the decision. When I asked how and why they'd made that decision, PALS said the consultant would contact me directly to explain the decision.
• It's been over two weeks and they haven't contacted me.

AIBU to make a formal complaint or is this just what the NHS is like now? If it makes any difference at all, if I paid hundreds of pounds (that I don't have), the consultants have availability to see me this week.

I know you're frustrated by the treatment (or lack thereof) you have had so far but why would you not just call the cardiologist's secretary and ask them to check they sent you the right summary? As none of the information is correct - you aren't pregnant, have had no blood tests etc - I personally would be more concerned that there has been a clerical error and your file has been mixed up with someone else's and you have both been sent the wrong reports

It's worth contacting your MP including copies of the communication, and asking them to get involved. This may change their decision.

omg! This is terrible!! Contact PALS again and let your GP know.

That's shockingly awful!!

It's says in the OP that cardio don't answer the phone

They won't answer the phone but a lot of the information in the letter is correct - it's definitely my letter, just with fundamental bits that are wrong.

Definitely complain.
It's sad that that's sometimes the only way to get things moving.

Also, this sounds like POTS. My sibling has it, in and has been in and out of hospital multiple times. Similar age, and took absolutely ages to diagnose. Even though it was suggested early on!

Cardiology referrals here are dire. I know someone who needs a heart valve replacement of some description and he has been waiting for this surgery since before Xmas last year. He’s been told he could drop down dead any minute.

Oh God, just seen your update. That’s shocking. They must have transcribed their opinion about someone else onto the wrong notes. That needs rectifying.

Bet a year's salary it's covid related. Nowt they can do. Every department inundated especially cardiology etc with covid related damage. But sure its over.

If you're in London and decide to go private, I can recommend an amazing cardiologist (he also works out of Barts on the NHS so you need to be in East London for that). He's also a specialist in POTS. An initial appt costs £350 (follow-ups are £250).

I am sorry sounds terrible - I am wondering if you have PoTS. If you have one of those finger oximeters take your heart rate lying down, stand upright for three minutes and take it again. If its gone up 30-40 beats in that three minutes you could have PoTS. Do this every day for a week and if its the same increased reading (ie difference of 30-40 beats after lying down going to standing) message your doctor and tell them these results and say you think you have PoTS.
www.nhs.uk/conditions/postural-tachycardia-syndrome/

I would send them a complaint about the letter. There is obviously a massive admin problem. Not answering calls, responding to voicemails, not fast tracking appointments with numerous GP requests. And now wrong information on the letter… this shouldn’t be happening.

Sorry I should have said do this on waking every day for a week. ie leave the oximeter next to you bed and take your heart beat when lying and then again after standing for 3 minutes.

The NHS is broken. It’s an horrendous mess and I wouldn’t trust them to nurse my pet cat. I think you’ve been more than patient, and would have kicked off months ago. Contact your MP. Contact the Press.

I hope you can get this untangled and sorted out. I just wanted to say though, for all several people are wondering about POTS, if your heart rate is sometimes going as high as 200 bpm there are other things that need to be properly considered ahead of POTS, I think in an adult that is more in the territory of an arrhythmia / conduction pathway problem.

Another thing you can do is pay privately for a cardiologist who works at your local hospital - if they think you need treatment they will refer you on the NHS.

Sorry OP, but I am a bit surprised at your question. How on earth can you be wondering if it it's ok to complain ? You have a potentially life-threatening illness and you can't see a specialist for it ? Of course you must complain.

If I were you I would ask to be referred to a different trust and travel there.

I am not sure how far a complaint would get you.

I would write to the Head of the Trust and copy to my MP and local newspaper / TV station. I know you said you are moving, but there's no guarantee the new Trust will be any better.

Not all consultants do private work. A lot only do NHS work. To work in a private hospital as a consultant you have to have a ‘priviledge’ to work there, usually by being nominated by another private consultant. You just can’t turn up at a private hospital and start seeing patients!

Cardiology dept where I am is horrific. My mother is late 70's OP and I swear they are just waiting on her dying. I'm at my wits end. Her consultant is an arse, who cancels appointments short notice, would rather telephone than see her then make her wait 5 months for an "urgent" appointment. No one returns your calls and when you do get to speak to a secretary they take another message but never get back to you.
If I were you I'd raise it with my local MP, also go down the formal complaint route, your GP can back up the referrals they sent.

Would formally complaining actually get OP a diagnosis & treatment sooner?
Coz I can't see the point otherwise.

podcasts.apple.com/gb/podcast/the-dr-louise-newson-podcast/id1459614845?i=1000570444728

this podcast about women and heart problems was very interesting listening - yet another area where women’s health issues are downplayed. (It’s a menopause podcast about heart problems - but if you ignore the menopause angle, then the stuff about getting a heart problem diagnosis is useful)

It is not correct to say that all consultants do private work.