We haven't had much luck with doctors over the last couple of years and it has frustrated me so much. It has got to the point now when I go with the kids to their hospital or doctors appointments ready for an argument. It shouldn't be like that!
It all started when we moved here and our GP referred Becky instead of Ellie to Audiology for a hearing check. It was a medical mix up. In the end it was all sorted out but because the pandemic was in full swing we only had a telephone appointment with the audiologist. He was in lovely man who had time for us and was a great help. He wrote a letter to Ellie's school confirming Ellie was deaf. It is hard to get the extra support because Ellie's deafness isn't visible. She doesn't have a hearing aid yet, that is a work in progress and he also referred us to a hearing support network through our local council who liaise with the school. We were supposed to see him at the hospital when it was safer, after Covid but that didn't happen, goodness knows where he went but each time we've been to audiology since I have looked for his name on the list of doctors and he is never there.
At the end of 2020 Ellie went for a hearing test and a check up and we did not get on with the doctor! He hadn't read any of Ellie's notes, did not know why we were there, he seemed confused that we had travelled to Scunthorpe from Newcastle when we had actually moved house and rolled my eyes so much. When he said that Ellie shouldn't go to nightclubs or spend time in factories she turned to him and said that she was only 13 years old so the chances of that happening was slim.
We have seen a couple more doctors to do with Ellie's hearing who haven't read her notes and then the worst appointment ever when we were told Ellie had small, old bleeds on her brain that were found during the MRI scan before she gets hearing aids fitted. The doctor was less than helpful, did nothing to reassure us, wouldn't answer any of our questions, mumbled and used medical words we didn't understand and wouldn't explain. I was so angry, upset and worried! A complaint has since been made.
When we had Ellie's heart check a few weeks ago I was dreading it! In hindsight I could have taken Stu along but we thought it was still one parent per child. I was really starting to stress myself out as the appointments were running half an hour late but I know it's pretty normal. We took a whole afternoon of one doctors time when my girls were diagnosed with holes in their hearts. These things happen but as soon as we walked into the doctors room both Ellie and I felt at ease and the cardiologist told us that he likes to chat, likes to answer any questions and has time for us!! Wow! Usually we feel rushed but this was so different.
The cardiologist chatted to Ellie about all sorts. Roblox, PE lessons, what she wants to do when she leaves school and told us it's good that she wants to be an engineer but not in the army as with her heart defect she wouldn't pass the medical tests which was interesting to know. It was a clever way to get information from her but still talking about things which interested her.
He said it has been a while since he got to do an echocardiogram (heart scan) on a child Ellie's age and said younger kids wriggle about, jump off the bed and some have to be pinned down, in the nicest way possible. He told us that earlier that day he had to scan 8 superhero action figures before a little boy would let him anywhere near him. He was one of those doctors which just has time for his patients. While doing Ellie's scan he talked us through what he was looking at, pointing everything out even the stitches around the hole which was patched. It was fascinating to hear and see. I have had the basics shown to me before but not in that much detail.
The cardiologist answered all of our questions and I had a lot after not seeing a heart specialist for over 2 years. I had mentioned that I was unsure about Ellie having her Covid Vaccine after reading things online about the side effects and he seemed upset that I didn't have someone to contact to ask these questions from the hospital and his team. We had a person when we used to live in Northumberland, someone based at the Freeman Hospital and we were told that when we moved here we would have the same but that didn't happen. He gave me his card and that has a phone number and email address on and said if I have a question to get in touch even if I think it's stupid, there's no stupid questions when it comes to the heart and my kids health.
I also found out that since the pandemic started the hospital has been in the process of switching from paper notes to notes on the computer and he found that the doctors would only look on the computer and not through paper notes and certainly not through a folder the size of Ellie's. He said hopefully now that we have had a check on her heart all the doctors that we see in future for other things will get a grasp of her whole medical history.
Ellie has now been discharged from the children's department as her next check up will be in two years when she will almost be 16 years old but we will get to see the amazing Cardiologist once more at his teenage clinic in Hull. When we left his room and said goodbye we were taken by another member of his team to explain the transition from children's to adult cardiology and he said Ellie will be seen by the same cardiologist for each check up or a member of their team, at Hull.
Becky had her first visit to the cardiologist out patients clinic in Hull a couple of weeks ago, the same one that Ellie will be going to for a check on her heart and the nurses and doctors there were amazing too. They had so much time for us, they were friendly and again explained everything. She doesn't have to go back for 3 years so we will back there with Ellie before Becky goes again and I feel really happy going there.
I feel so much more relaxed about the girls heart appointments now. A good doctor really makes such a difference. A good doctor makes us feel at ease, reassures and will answer any questions that we have! I am glad we have at least a couple now.
A good doctor makes such a difference! We used to find great doctors wherever we went but they are getting more and more pressure to rush through each visit and it seems like they are getting harder and harder to find.
ReplyDeleteAww I'm glad you're with a good team now and that they managed to set your mind at rest. There's nothing worse than having a whole bunch of unanswered questions and nobody to ask them to.
ReplyDeleteSo glad that you have the best support now. A good team really makes the difference! We've been lucky to have some amazing people in Craig's care team, it's a huge comfort. x
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