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.

That was my first thought too. I'm not a doctor but dd has POTS.

On the plus side, it's not generally life-threatening. Dd isn't too bad. Her main treatment is salt tablets.

But yeah, if you can afford it, I would recommend going private.

No, all consultants do not work part NHS and part private.

OP definitely write to hospital senior mgmt.

Be careful with exercise while you’re waiting to be seen. Infuriating though it is, if you can find the money somehow I’d be tempted to go private. If they find something they can pass you back to NHS.

make a complaint through the hospitals concerns team with the timeline you have given, the managers usually then magic up an appt after being contacted by concerns

Absolutely this .

I would absolutely make a complaint. It's totally unacceptable. I'd also consider contacting your MP as they will have a team which take issues like this to a specific person at trusts and CCGs and should be able to get things moving.

@passport123 there is a rapid access cheast pain referral route which is treated the same as a 2ww referral.
I would ensure your GP has referred uou via this route but if a consultant triages your referral they can downgrade any referral to a routine.
The lack of communication is very poor
I would contact PALS ask your complaint be to made into a formal complaint then they have procedures and investigations to adhere to.
Is there another Trust nearby you can be referred to ?

That is appalling. A formal complaint is definitely needed.

I'd also ask my GP for a referral to a different hospital asap.

Measuring against my own experience this is an awfully long time to wait.

I received a referral to cardiology following intermittent chest and arm pain, and heart rate symptoms similar to yours.

I received an appointment within 3 weeks.

I have a family history of heart disease and am.older than you so possibly seen as higher risk which may have expedited the appt. Am also in Scotland so waiting times may vary.

I would do whatever you can to speed this up and if it requires escalation do so.

The stress alone of waiting so long will be doing you no good.

Best of luck

@TheNoodlesIncident

Many many NHS consultants do no private work at all.

This is utterly appalling.

Raise merry hell. Formal complaint letter to CEO and give them 5 working days to find you an urgent appointment. Then contact your MP if one isn’t forthcoming.

1. Complain
2. Go to A&E every time you have an episode so your ongoing difficulties are not invisible to the hospital.

In comparison my SIL had some similar episodes, none requiring an ambulance or hospital admission. Triage phone call with GP practice, followed by GP appointment withing 24 hours & referral made to cadiology. Cardiology appointment within 3 weeks and currently on a home cardio monitor. All NHS.

My Dd is 17, she has been having problems since feb last year and is on an urgent list to see a cardiologist. I was told there was a 54 week wait. It is severely impacting her life and there is nothing I can do

Haha re GMC. Do you know what the role of the GMC is?
Hint: nothing to do with this.

I see a few PP have mentioned PoTS, but you don't mention whether these episodes you're having are linked to sitting/standing, which PoTS is. I have HyperPoTS and I would have wondered if this is what is happening to you only you mention your blood pressure can also go so low you pass out. As far as I'm aware, that's not a PoTS thing, thats orthostatic hypotension, and I'm not aware of it occurring within or alongside HyperPoTS (which causes spikes in blood pressure as well as heart rate). It's certainly worth reading up on but I wouldn't like to presume it's just PoTS

Like PP said, I'd be tempted to go back to A&E next time it happens, and see if you can get any further with Cardiology through them

And if the episodes are related to lying/sitting/standing, you could also see if your GP can directly refer you for a Tilt Table Test, rather than waiting to see cardiology first

I'm having problems with my local hospital, DH wrote to the CEO, all he did was pass the letter to PALs! Sounds like you have grounds for a formal complaint. Don't know why your hospital couldn't let you know the reason for you not being seen sooner.

In my area we had to have the consultant ask for the tilt test. We have had that done for my DD so POTs is ruled out which is great but it still doesn't tell us what is wrong and I find it hard to sit and wait when her quality of life is hugely affected

To be fair, passing complaints to PALS is the right thing to do, complaints need to be independently explored, not just internally investigated amongst people who are colleagues and have an interest in protecting each other.

Same with me. June 2021, my GP referred me to cardiology after my BP shot through the roof and constant palpitations had started. I'm still waiting. Zero communication from the hospital. The GP says there's nothing they can do about it, the referral was received. Every time I get bloods and ECGs done she forwards on the results, but that's as much as she can do. I have a cardiac history. My family all have terrible hearts. My mum died at 50-years-old (years ago) while waiting for a pacemaker. She'd been waiting 4 months at that point. The NHS is dire at the best of times, but since Covid it's been horrendous.

As a nurse myself, 3 things-

1. yes that’s bloody awful please make a complaint and speak to your local MP that’s utterly ridiculous
2. if you can afford it, I’d go private. You need proper investigation asap as cardiac issues can be very serious (not to scare you) but I can’t believe they haven’t bent over backwards to get you seen after what you have described
3. if you can’t afford private, go back to a and e (some people will disagree with me with this but you’ve waited too long now you need to be seen, again I don’t want to scare you but cardiac issues can cause so many problems, strokes, heart attacks, even cardiac arrest, if you were my friend I would be telling you to go to A and E and get seen again)

How have you got on @Hottt any further?
I do hope you've managed to get further along. Must be so frustrating.

The suggestion of going private if you can afford it is absolutely awful. Having been in a position with a family member where we scraped money together in desperation only to end up not much further along only added to the feeling of helplessness.
It drives me crazy that paying to go privately is seen as an option when for many it really is out of reach and you often end up back waiting for NHS help anyway.

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“

which is great if you can afford to.

I would contact your MP and explain it to them. I had to do the same earlier this year and I’m sure it’s no coincidence that, within a week of him writing to the hospital CEO, PALS were suddenly in touch with me and the relevant department made the required appointment!

Just wanted to update on this. Last week, I finally got an appointment and had a 24 hour ECG and telephone call with the cardiologist which I thought went ok. However, I got my summary letter of the appointment through in the post today and the cardiologist has stated that they believe my symptoms and the abnormalities on the 24 hour ECG were caused by pregnancy and so not of concern. But I wasn't pregnant - and I'm not pregnant now!! When I got to the hospital on the very first day (June 2021), they asked if I could be pregnant and I told them no. They asked if I was using contraception, I told them we were using condoms, they made me do a pregnancy test - negative. They also said the blood tests from September 2022 showed X, Y and Z but I didn't have a blood test then (or even close to then) and they said I attended A&E with these symptoms this month which also isn't true. I'm moving house so I'll just go to my new GP and get a new referral to a new cardiologist. These people have no intention of helping me.

Have you had covid or vaccination? So many patients needing ECGs at the moment, after suddenly developing symptoms like this, such as palpitations.