Keep cancelling appointments

[Itscurtainsforyou]

My little boy had heart problems that were treated with surgery, then medication. We were being reviewed every 3 months. We last saw his consultant 16 months ago who said to stop all meds. We returned for a further appt 2 months later where everything looked great, but we saw a different consultant who stated that they thought he should be discharged it would be best if he saw his usual consultant first.

We received a letter stating that he would be seen again 6 months later (so in March this year). No appointment was sent, so I chased it and we were given an appointment in June, this appt was later cancelled and a new one sent out for September, this one was cancelled and we were sent an appointment for November. I was concerned about these cancellations/delays but convinced myself that the next appointment was just a formality and we would be discharged, so it didn't matter too much.

However I've just been told that the November appt has been cancelled, a new one offered at a time we can't make, so no doubt we'll go back into the system and wait months again.

I am hopping mad. I don't think it's appropriate to have 3 appointments cancelled and wait over 14 months for a follow up that should have been done after 6 months.

Apparently the dr will contact me to discuss next week but the way I feel is that if I don't get a satisfactory response I'm going to complain to PALS.

Is this a measured response? I can't see the woods for the trees at the moment. I know that technically we're waiting to be discharged, but what if something else has gone wrong in the meantime? I just think to wait 14+ months and still be fobbed off isn't good enough.

[cestlavielife]

It seems unfortunate.
Can you ask for a phone appt phone consultation?
But if you not seeing anything to worry about then an appt won't change anything ?

[scotchpie]

Sounds like my DS Hospital, appointments kept getting cancelled after waiting months to get on.

I bet it’s the same one

[Floralnomad]

I’d ring the secretary and explain the issue and see whether she /he can sort it out for you .

[Itscurtainsforyou]

It's an issue that we won't be able to detect (he'll need ECG and echo at hospital) so I have no clue if he's ok or not (no obvious symptoms before) - probably why I'm worrying.

I spoke to secretary yesterday who said she'd get the consultant to call me.

I just want to be either given the all clear or have treatment for the next thing that may have developed in the meantime. But 14 months is an age between appointments if there turns out to be a problem.

[CotswoldStrife]

That seems a long time to wait to me, I'd be tempted to go to PALS straight away.

My mum had a number of appointments with the same consultant cancelled and eventually saw the consultant on a Saturday morning, they were doing catch-up clinics

[AnyFucker]

Go to PALS. That is not acceptable. You sound perfectly reasonable and this is not ok.

[JessieMcJessie]

Agree, PALS is a good idea. How old is your DS?

[Itscurtainsforyou]

Thanks - it's good to know I'm not being "that" parent. He's only 2 so can't even verbalise if he doesn't feel quite right.