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.