AIBU to complain to PALS

[biologicallybroken]

Hello.
I don't know what to do or where to turn and I'm utterly desperate. I will try and keep this brief I just desperately need some advise.

Medical history: I was diagnosed with cancer at 23. After gruelling 9 hour surgery and intubation for a while after, followed my chemo, by the grace of god I'm alive. I still have the cancer (it's a rare one that you have to stabilise) but thankfully there is no evidence of tumours. I can only pray for many more clear scans. I don't drink or smoke, never taken drugs. Have a 1 year old DD conceived via IVF 2020. She's nearly 2.

What my new issue is, is completely unrelated. This is probably really outing but I'm passed the point of caring.

Beginning of august I collapsed at home. I had never collapsed in my life. I was putting a chicken in the oven, and just dropped to the floor (chipping a tooth on the way). Heart rate was c35bpm.
Hospital put it down to vagal syncope. Had a bag of fluids and sent on my way.
After a few days at home it happened again. And again and again and again. I knew I couldn't kept going into hospital each time so tried the GP - still waiting for an appointment. Last month the collapses have turned into full blown seizures. Admitted to hospital again, had every scan, ECG, EEG, tilt table test, stress test, 72hr halter. They have absolutely NO trigger whatsoever. The doctors witnessed many. Sent home with ivabradine and to see what happens. They also fitted a Loop Recorder in my heart.
Last Wednesday I had 6 back to back seizures in 30 minutes, with me being totally unresponsive during. I have no recollection of it. Loop recorder showed heart rate of 229 for 42 minutes.
Another week in hospital, more head scratching. Sent home with POTs diagnosis. Now apart from the first ever collapse, every single other episode has been sitting / laying / even sleeping. Tilt table test fine. Blood pressure slightly low but fine.

Near the end I promise. This morning. I was up early 5am reading. (I struggle to sleep from the adrenaline dumps from the seizures) symptoms started, woke DH for an impending seizure. I was out cold for 8 minutes. I was breathing, heart rate was reading 272. It was between 250 and 280 for 12 minutes. Came round vomiting seeing the blue lights.
The paramedics were fighting my corner to get me a side room. As soon as they left I was put in the waiting room in A&E on a normal chair. I had 3 seizures in that chair, one ended up with me on the floor. I was beside myself with embarrassment. Got taken into a side room, said bloods were fine, heart rate is fine and to go home. I am terrified that I'm going to die. 5 out of 7 ECGs showed prolonged QT but no diagnosis. I have surrendered my driving license, therefore have stopped working. I cannot be on my own. I can't take my baby out. My life has well and truly gone up the shitter. I begged and pleaded with the doctor to please help me. She said as I'm 28 and slim, my heart will take it and not to worry. That I don't need to keep coming back in.

The lines are blurring. Surely a sudden loss of consciousness and an incredibly high HR for a sustained period of time is an emergency. When it happens I honestly feel like I'm going to die. I panic which doesn't help. Family history on mums side of ventricular fibrillation.

I'm waiting for an 'urgent' referral to a Arrhythmia clinic within six months. I'm not allowed on ANY anti anxiety meds to just try and get some sleep as they don't know what's wrong. I've been living off of 2 hours broken sleep for weeks. I'm underweight, I'm tired, my hair is snapping and my nails are breaking. I look ill.

I got sent home. I waited 45 minutes for the nurse to remove my cannula as they were ushering me out of the room saying they needed the bed. The nurse didn't come. I walked out, came home and took it out myself.

I'm sat in tears in the bath. When will this get better. Do I need to complain to PALS to get some sort of care or answer? Am I being dramatic and there really is nothing anyone can do? The doctor suggested going private if I can afford it. I can barely afford food on the table as I'm now not working. My mother had a serious stroke at 34. I'm desperately scared history is going to repeat itself. If you're still here, thank you. Thank you so much.

I can’t offer any advice, OP, but I’m holding you and your family in my prayers. I hope you find out very soon what is happening to you. I’m also a mum to a 2yo and can’t imagine the fear. Love and light to you x

I have absolutely no medical advice I'm so sorry but I just wanted to say how incredibly brave and strong you are.

I can't imagine the worry and strain this is putting on you, I'd say you have nothing to lose making a complaint, and I wish you the very best for a proper diagnosis and treatment soon. ❤️

OP I'm a medical professional working with ambulance services to reduce inappropriate use - please continue to use 999 ambulance, your GP, ED and anyone else you have to! This isn't okay at all. Definitely complain to PALS and keep being a squeaky wheel!

Please don't think about it as 'complaining' to PALS. Think of it more as a request to investigate a problem

It sounds like you need a good review of your notes from an expert, I would expect this to happen when you're seen at the arrhythmia clinic, if it is pots or a conduction abnormality they'll get to the bottom of it.

Were you told you have a long qt, or did you read this off the auto interpret on the ecg? If you were told by a doctor you have one then likely you do, but if you've just read this of the ecg strip then you may not. It's more complicated than that, needs to be corrected for your heart rate and considered in context of your gender. A lot of machines just give interpretation for 50yr man hence needs to be interpreted by a doctor who can interpret ecgs well.

Not meaning to be a total git but just to consider whilst picking study options because I've seen this issue break colleagues. Whilst you can often get your driving license back after a year seizure free it's not the same as blue light driving, its typically in the region of 10years seizure free. It can also be difficult gaining employment with certain medical conditions so worth confirming you'd be allowed to practice before committing time and money on qualification. Basically in the role you might be on your own exerting yourself for a long period with someone very unwell, if theres any concern you could be at increased risk of a collapse etc then it wouldn't be safe to put you in the role. You need to pass a thorough medical including review of your medical notes to get the licence.

Alternatives can include nursing, whilst starting off on ward you can progress to an acp role including prescribing. Theres also a physicians associate role which is direct entry to a similar position as an acp - very varied can include surgical time, some similar working practices as a doctor. Or of course a medical degree!

I can’t even imagine how scary that is. Sending love 💗

If nobody complains, problems are swept under the carpet and nothing changes and people continue to suffer. It's more harmful not to complain in a situation like this.

Complain formally.

I know you have said that you've been seen by neuro but has anything like non-epileptic attack disorder been mentioned to you?

I know someone who now has cardiac problems, SVT as a result of past chemo and has to be followed up due to it.

Thank you for your message I really appreciate it.

I know the paramedic science degree realistically is down the drain. I'm going to give it a year and regroup and see about potentially a nursing degree.

In regards to the QT, it's in my discharge notes. The consultant has said it, and gave me a loooong list of medications to absolutely avoid, and a leaflet about prolonged QT with some charity / websites.
On discharge notes it also says prolonged QT with a couple of 3 digit numbers which I guess are readings, I'm trying not to look into it too much though.

I think I'm going to go a private consultant route. I've found one near me who is incredibly well reviewed and specialises in abnormal arrhythmias, POTs and heart defects in young adults. I'm going to call Monday and just see if he can book me in and just read through everything and bring everything together again. I don't know if I have a specific consultant at the hospital I'm under, I've just seen which ever consultant is on the cardio ward that day per say.

Thank you for the information it's really very useful!

Interesting. I'm going to mention it to my oncologist, I'm due to see him for my annual check up in 2 weeks!

They've sort of mentioned it. They mentioned not all seizures are epileptic but they're pretty set on them being cardio. It was back and forth for soooo long and they kept referring to each other like table tennis. They mentioned starting Keppra but want to bottom out why this is happening first! I just have never come across cardio issues causing literal full blown convulsing seizures to the point teeth are being chipped and tongues are being bitten. Feel so lost atm :(

Complain to PALS but cc your local MP. They need to start to understand the real problems people are facing concerning the NHS. If we all do this, we will cause it to be debated.

I'm sorry OP. Here's my thread with a similar situation: www.mumsnet.com/talk/am_i_being_unreasonable/4612578-aibu-to-make-a-formal-complaint-about-this - the only way to get any help at all is to go private. The truth is, if you die then their waiting list gets shorter and they don't benefit in any way if they try to help you. I'm so sorry, good luck!

I wonder if they have checked you for Addison's disease?

Medic here, yes people are losing their lives due to an inadequate health service life expectancy has fallen by 2 years and infant mortality is rising. These things do not happen in a society with decent health care.What you are going through sounds awful.

I’m sorry you are going through this. It would be completely appropriate to use PALS in this situation - if it helps, it is more of a way of effectively resolving a situation rather than a complaint with no outcome.

I would really urge you to speak to your oncology team as this may be chemo related.

good luck with it all!

Wow as a cancer patient with a complex diagnosis & 2 ED admissions under my belt this is a little terrifying — but something has to be done; the NHS is at rock bottom.

OP I am so sorry you are in this position - I have a small child too so I know how terrifying it is. I have utilised PALS a few times & it’s worth doing to at least flag up the issues as they will have to investigate your care fully. And your MP, I second that.

Unfortunately all this means in my experience is that eventually… (all the PALS targets/deadlines for response were missed in my case, as ED medics in my nhs trust have zero time allocated for paperwork/ interview/review via PALS) … you’ll receive a response detailing what they’ve done - i.e. who they’ve spoken to; what they’ve said; what new systems are being planned to ensure mistakes don’t happen again blah blah & it will fall a bit flat. But I do hope that your case could be different as it is ongoing.

You can also consider asking for a second NHS opinion which you are fully entitled to. If you research the best NHS hospital/ consultants for heart issues like yours it might be worth getting a referral so at least you’ll be in line for appointment. I had a second opinion from the Marsden & it really helped practically & psychologically as my local hospital like yours, is sub-standard. I’m in the process of trying to switch all my care there.

The private consultant you have found sounds like an excellent bet through.

Unbelievable we have to do this, but here we are.

Please go to PALS. I know you shouldn't have to, but sometimes it's the only way. You have nothing to lose by doing it x

I think speaking to your oncologist sounds like a great plan @biologicallybroken - was just about to suggest this so it's great you have an appointment coming up. In fact, if you're able to email them in advance and let them know what's going on that might help to get 'ahead of the game' as they might want to look at the research around your symptoms or speak to colleagues. I think childhood/young adult cancers and their treatments are largely not understood by adult physicians in general hospitals because they're relatively rare. And if you had an unusual treatment then even more so. But there are definitely known effects on BP regulation and the heart in adults who had treatment to the chest as a child.

You are absolutely not unreasonable in being frustrated and, frankly, terrified by these symptoms and the lack of diagnosis or effective treatment. PALS might help with communication at least, but as others have said unfortunately the NHS is well and truly broken at the moment. It sounds as though you've had lots of tests and actually just need to see the right expert, rather than that anyone you've seen so far has been dismissive or negligent. Our daily work is like pushing water uphill - we all know that we're not providing the service we want to give or that patients deserve. PALS will have heard this all before, I don't doubt. There will be many, many patients with life-altering symptoms also on the list waiting for an appointment at the arrhythmia clinic. None of this is okay. And I'm not sure how we rescue the whole shebang to be honest.

I'd definitely speak to your oncologist. And ask them to liaise with the private cardiologist you've found. I really hope you get some answers soon.

Hello everyone.

Thank you so much for all your comments and replies. I have booked a double appointment with a private cardiologist who seems really good, at the same hospital I am under for the cancer. (Different to my local hospital where I've been treated for heart stuff.)

I would just like to start again, get some fresh eyes on the whole thing. I have only seen the doctor on the ward round in CCU where I've been admitted. I've also managed to get a look at my medical records and there are many things in there and different entries from different doctors.

There is bits about prolonged QT, and something on my brain CT scan that needs a neuro referral which I was unaware of. It's a minefield.

So - I'm seeing him next week and I'm hopeful. I just want to regroup and almost start again. And the fact he is under the same trust as my oncology team and my particular surgeon makes me feel much more reassured!

Good move. Shouldn’t be necessary, but it is xxx

Good luck with your appointment, I hope all goes well.

HIPEC has been documented as a cause of ventricular arrhythmias. I think as it is a relatively new way of delivering chemo there is a bit less knowledge about it than conventional chemo. (I assume this is the unusual chemo you had)

If your local hospital iis not the specialist centre that administers this then they may have less of a grasp of the longer term side effects (which are only now being worked out)

I would suggest writing to your original oncology team for an update as well as being seen locally.

BTW the complex working out of these disorders if often better done in outpatients where thare is a least a senior clinican and one patient at a time. Inpatient investigation is not really quicker at the moment because the NHS is overloaded and understaffed.

I'm sorry this is happening to you. It's scary and so difficult to see your way through.

PALS may expedite the outpatient service

just seen your update (I am a slow typer) glad you have an OP appointment with a specialist