"Removal from a clinic list"

In April 2022 I got my medical records & was concerned re the results of 2 MRI cardiac scans, showing mild narrowing of the aorta & mild dilation of the aortic root. I had been previously told these scans were entirely normal. (Narrowing of the aorta & dilation of the aortic root can be big issues in the complex condition I have, so I was worried). I wanted to ask some questions. I was not saying the findings were wrong - quite the opposite - but I did think I should have been told.

I had previously been unable to get my routine clinic appointment, which was due, & had no idea whatsoever when I would be seen. So when the issue of the MRI scans arose, I contacted the clinic & Pals & lodged a complaint. I repeatedly asked for contact from the clinic re the MRI scans, but for many weeks these requests were ignored. I eventually got an appointment in July, but the consultant could not answer my questions because they were not a cardiologist. They seemed to want me just to trust the cardiologists & not ask questions. I feel the eminent reputation surrounding the cardiologists was being used to block my questions. The consultant was frustrated when I still wanted to ask questions & talked of "not trusting" ... (But should any member of medical staff be above answering a question?)

Shortly after the appointment my GP rang & asked if I consented to them speaking to the consultant. I said I'd rather wait till I had received the complaint response, which was overdue. Shortly after, I received a copy of a letter that was sent to my GP. It was awful, containing wrong assumptions, things taken out of context, absurd irrelevancies, comments that were belittling of my history of diagnosis - some things were just wrong. It seemed to look for every possible way to put me in a bad light. It ended by removing me from the clinic list, for not trusting - on the basis, it seems, of trying to ask questions. Therefore, the removal from the clinic list & the contents of the letter became matters of complaints. I wrote a detailed letter in relation to these matters - which took a lot of time & thought (in the event, I don't think it was read at all - by anyone). I drew PALS' attention to these issues many times, verbally & in writing, & got assurance they were being investigated alongside the original matters.

It took nearly 8 months to get a response to the complaints. Chaser emails, phone calls, letters were often ignored. I was not kept updated. When the response came (prompted by the CQC) it failed even to mention the 2 most important issues, ie the removal from the clinic list & the contents of the letter. The response to the issues which it did try to answer was inadequate (& seemed like it was drawn up, for the most part, by the person central to the complaint). No explanation for the nearly 8-month delay was given. I contacted PALS immediately & was told the case would be reopened. After more chaser letters, emails & phone calls someone rang me to note down the inadequacies of the response. I thought they said they would put those in writing & email me a copy, but this didn't happen. So after a while I put them in writing myself & emailed them a copy.

During the phone call I was assured the two matters of complaint which had been entirely missed before would now be investigated. (Apparently, my complaint letter in relation to these issues had been "overlooked": that cannot have been accidental, as I drew attention to it, verbally & in writing, many times.) It was also agreed I would email my questions for the cardiologists. I did that & requested confirmation they were being passed to the cardiologists. That request for confirmation has been ignored. Further letters & emails asking for confirmation that the investigation is proceeding have been ignored. Yesterday, my GP said they had received another letter from Exeter saying I should be referred elsewhere. I have received no such letter or copy.

These interactions with the hospital are causing me much stress & anxiety - I feel this is knowingly, because they cannot fail to know. A 7-8 month delay to get an entirely inadequate complaint response which should have taken 45 days -and then to find that the response didn't even mention to 2 main issues. I have been ignored, blocked from asking valid questions, treated with a complete lack of consideration & respect, with contempt really. I don't know whether the complaint investigation is proceeding or how long that may take. I don't know if the valid questions I have been trying to ask since April have been passed to the cardiologists & whether they will be answered. I am left without specialised care. How can I go elsewhere (even if I could get on another hospital's lists) when I don't know why I have been removed from Exeter's list, don't know what I have done wrong? All I've done is tried to ask some questions re MRI scans.

I'm not going to be intimidated into not asking questions, so presumably the same thing could happen again!

I also did put in a complaint of course.

I know the hospital is under huge pressure, but this has been ongoing since April 2022. There is no excuse to treat people like this, walk over them really. It simply alienates them. All that was needed was for my valid questions re the MRI cardiac scans to be answered.