To be disgusted by treatment in hospital? (And what do I do now?)

[DoggyPaulAnka]

So I was admitted to hospital due to having a high pulse rate (160 bpm), chest pain and over the last 4 months losing 10% of my body weight.

They did bloods, ECG and chest CT scan. All came back clear. They told me I needed an Echo cardiogram but they didn’t have any beds (I had spent 2 nights at this point “sleeping” in the waiting room of the Assessment Unit). So I would be referred as an Emergency Outpatient and bought back in a day or two.

That never happened. A week went by and I called the hospital. Was told to give it another few days and call back as the referral hadn’t reached the department yet. Another week and I’ve called again. My Discharge letter was filled in incorrectly and my notes do not mention an echocardiogram. So I can’t be referred for one.

I spoke to the secretary of the consultant who saw me in A&E who says I have to present to A&E again to go through the whole process if I want the echo cardiogram. Only thing is other than the weight loss and mild chest pain my other symptoms seem to have settled so I would feel daft going to A&E again.

My GP has referred me for the scan but the earliest I will be seen is January.

Would you wait for that appointment or try presenting again at A&E?

Oh they did find a heart murmur in A&E which is why they want me to have the echo as I’ve never been told I’ve had one before. (I have pneumonia a few times and so had my chest listened to quite a bit).

Wait till January

That is terrible service and clearly when you phoned the first time they didn't bother to check if it had been requested just to get you off the phone. Is there any chance you can go private?

I’d love to go private but my DH has just been made redundant and it’s so close to Christmas we just can’t find the money. I’ve spent the last hour angry cleaning.

The whole experience was terrifying and a lot of the fear was down to the NHS not working. My GP phoned an ambulance for me that never arrived so they had to send me in a taxi. This was just the first example and it only went downhill from there.

Could you ring the echo department, say you are willing and able to attend any short notice cancellation slots -and would they be willing to bear you in mind for that...?

I’ve been waiting for an echo scan as well, apparently they have massive backlogs at my hospital. Appreciate that doesn’t help you much, sorry.

The thing is there was concern over some slow form of endocarditis. Which Google (I know, I know) tells me is terrible and life threatening. Because there aren’t any notes I don’t know if the X-ray, blood tests, ECG and CT scan are enough to rule that out or not?

Present at A&E and get yourself back in the system. Did you get a reason for your symptoms? Sounds like nothing was diagnosed so I fail to see how you can be discharged with out any follow up.

I'd be tempted to ring or email their PALs department and ask them to clarify....

• why you were told that you needed an echocardiogram when no referral was actual made for you?
• was the clinical decision to not order and therefore delay the echocardigram clinically sound & within NICE guidance for treatment pathways.

In all honesty you may not have got an earlier appointment unless an emergency but at least you'd know and they would be offering reassurance that it's clinically okay for you to wait.

sillysmiles I would feel silly going to A&E when at the moment I feel basically well. No diagnosis at all. Everything came back clear which is why they decided I need the echo.

NWQM thank you for the advice. I will email PALS now. I feel let down by the whole experience not just the lack of referral or notes.

I’m anxious that if it is this endocarditis thing then January is far too late. But no one I spoke to could tell me if that had been ruled out or not.

If they thought it was urgent that you had the scan they would have escalated it and you would be prioritised. I would call the echo department and tell them you can take a cancellation if they get one

Hope PALS help you. They have been fantastic the few times I needed them.

As per PP i would email PALS, they will then contact the clinicians that you have seen and investigate what has happened and hopefully get you sorted. No one likes an email from PALS. Good luck

Slightly off topic and may not be this at all but losing weight and high pulse rate / chest pains can be a sign of Addison’s disease - which is very rare but is easily diagnosed with a morning cortisol blood test. I would ask for this from your gp. I was fobbed off for 2 years with similar symptoms, losing 2 stone and going back and forward to a and e with chest pains etc thinking I was having a heart attack and was eventually found to have Addison’s.

Please dont just tip up at the department that does echo's as PP has said without a referral they wont see you.

Go through PALS. You'll get clear answers and possibly the clinical outcome you want

I have phoned PALS who have said they will pass my contact number onto the manager of A&E who will call me hopefully tomorrow to discuss. Thank you for the advice. I had never heard of PALS before. They might not be able to help but it’s got to be better than going round and round in circles with the hospital.

The only thing is if my symptoms do return and I have to go back to A&E will they know that I’ve previously complained?

No they won't know - it's not part of your medical notes. It wouldn't affect your treatment.

Hopefully PALs can sort this - it's exactly what they're for. All the best OP xx

@DoggyPaulAnka Please don't think of it as a complaint - unless you decide to actually formally complain if you see what I mean - PALs are there to help you navigate the system.

Now I just need to control my anxiety over sudden cardiac arrest and life will feel manageable again

No they wont know. But please do go back and be forceful with the clinician you see so you get a better treatment next time