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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU to make a formal complaint about this?

80 replies

Hottt · 16/08/2022 09:28

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.
OP posts:
Sirzy · 16/08/2022 09:31

I would write to the chief executive of the hospital outlining the exact timeline. I would imagine you will then be seen within a matter of weeks.

good luck

Mumspair1 · 16/08/2022 09:37

That is so awful and I can imagine how stressed you are. I would make a complaint. This is unacceptable to keep giving you the run around. My dh is diabetic and a cardiology issue was picked up by his endocrinologist (private). He needed a specific scan and tests to confirm this. The doctor asked us to try first on his referral to the NHS and they gave us a ridiculous wait time for a very serious issue. At the same we tried to see if our private medical would cover it as it was very expensive and Fortunately they did! From scan to results to consultant to treatment it took 6 days! 6 days for a very serious issue. It shouldn't be the case that you get faster treatment if you can pay up, most people can't.

biggirlknickers · 16/08/2022 09:41

Bloody hell, that is bad.

i don’t think all of the NHS is like this. Three members of my household have had various health issues recently that have been dealt with by different departments (orthopaedics, paediatrics, cardiology and others) but none of us have had long waits - a few months at most. And we have been able to contact people for updates (usually the appointments centre for our NHS Trude rather than the department direct, but they have always been able to update us satisfactorily).

I’d be so frustrated if I were you. Particularly with what you say about going private.

did you have a diagnosis after your hospital stay?

PassiveAgressiveQueen · 16/08/2022 09:46

This is truly awful you would in no way be "that person".

PonyPatter44 · 16/08/2022 09:47

That is bloody awful service. I completely understand not wanting to complain...but you don't want to be dead or disabled, either! I think I would do as suggested up-thread, and write a very stiff letter to the chief executive of the hospital. Good luck, I hope you get seen soon and can get some answers.

TheNoodlesIncident · 16/08/2022 09:48

In your position I would go private even if I had to take out a loan or put the cost on a credit card. Before thinking of complaining, which I still would because they need a kick up the arse for the messing around.

All consultants work partly for the NHS and partly privately, which is why they could see you promptly if you went private. Far fewer patients on the private list than the NHS one.

Your treatment has been appalling, and even if this is just the way the NHS is now, you need to prioritise your health first and foremost.

Paulineski · 16/08/2022 09:52

It sounds to me like you might have POTS. I'm not a doctor though.
Good luck with your referral. If you can afford to see the consultant privately, do it.

stevalnamechanger · 16/08/2022 09:55

I would complain but if you can afford it I'd immediately go private

AceSpades54321 · 16/08/2022 09:55

I would just pay up and go private. NHS obviously don’t think you’re issue is serious, but if it was me I would want to know for sure.

SharpLily · 16/08/2022 10:16

It sounds like POTS. Keep bugging your GP and go to A&E every single time you have an episode.

surreygirl1987 · 16/08/2022 10:21

Yeh that sounds appalling. By the way, I had something like this. I'd be sitting there and suddenly my heart rate would short right up to 140+ (wearing a fitbit) and I'd get really breathless and feel weak. I could feel it coming on and it happened quite a lot. I think I might have been pregnant at the time actually, from memory. I had an ECG and a bunch of tests and they found nothing, and it eventually just went away on its own.

InquiringMinds · 16/08/2022 10:22

Your case is extremely serious. Immediately contact the General Medical Council! PALS have never worked for us and neither has writing to the head of our hospital. If all else fails, perhaps try to be seen privately and if money is an issue, go for a good hospital that allows you to pay off your bill per month. I think BMI hospitals or Nuffield allow this. Hoping you get help asap.

Nursemumma92 · 16/08/2022 10:23

This is disgraceful, you should definitely complain. If you know the consultant's name then ring your hospital switchboard and ask to be put through to his/her secretary. Demand that they organise the consultant to phone you back... this is unacceptable to have waited over a year with a potentially serious condition and just be passed from pillar to post. Sorry you've been treated like this!

itsjustnotok · 16/08/2022 10:27

I work for the NHS and I would make a complaint. Detail it the way you have here. If you get another episode I would go to A&E and tell them it’s getting worse.

L0bstersLass · 16/08/2022 10:27

Complain right away, this is a disgraceful chain of events.

Rosehugger · 16/08/2022 10:28

Agree with what others have said. I'be tempted to copy in the health minister as well to let them know what a fucking state they've let the NHS get into.

passport123 · 16/08/2022 10:29

There's no such thing as a two week wait for cardiology (it's for cancer referrals) but yes I think a complaint to the hospital is reasonable. Shouldn't be up to the GP to expedite a referral, hospitals are not allowed to tell patients that, but they do all the time.

SunnyD44 · 16/08/2022 10:34

Sometimes you have no choice but to complain and I agree with PPs that’s that what you should do.

If you can afford it then I’d go private too.
I would go private in an instant if I could afford it and had health issues.

Sunshineandbrighterdays · 16/08/2022 10:36

Not sure if this is helpful or not but could it be SVT? A close family member was finally diagnosed with this after months of being fobbed off and getting no answers.

buckeejit · 16/08/2022 10:38

Yanbu, that's super shit & more stress to you.

Hope you get seen soon. I know it's absolutely not the answer but if there's any way you can go privately, it should help. The NHS is fucked

OutDamnedSpot · 16/08/2022 10:42

Make a formal complaint.

In the meantime, google POTS. If it sounds familiar, there’s a lot you or your GP can do to treat it without having a diagnosis.

PitifulPrincess · 16/08/2022 10:47

I'm so sorry you're going through this and are being fobbed off during an already very stressful time, it's outrageous. Definitely complain!

Ravenpuff93 · 16/08/2022 10:54

I work for the NHS in mental health, and I would say definitely complain. The private lists are shorter because as PP said, the waiting lists are shorter. Appointments do still get cancelled because of Covid because our staff get sick too. The NHS is on its knees but you have every right to complain and at least some of the delay to your care looks like it could’ve been avoided.

passport123 · 16/08/2022 10:55

InquiringMinds · 16/08/2022 10:22

Your case is extremely serious. Immediately contact the General Medical Council! PALS have never worked for us and neither has writing to the head of our hospital. If all else fails, perhaps try to be seen privately and if money is an issue, go for a good hospital that allows you to pay off your bill per month. I think BMI hospitals or Nuffield allow this. Hoping you get help asap.

this would get filed in the 'vexatious complaints' bin - GMC is for concerns about a specific doctor, not systems issues.

thereisonlyoneofme · 16/08/2022 11:03

I have gone private for a cardio scan as waiting lists on NHs horrendous. Got an appointment within a week.Well worth the money if you can afford it

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