So here it is, the blog about specialist consultants.
I am not too sure at the moment which direction this blog post is going to take. We have been fortunate enough due to the location that we live in, to been seen by some amazing consultants, on the other hand some we have seen have left us questioning why that person would want to do a job they clearly don’t love.
First consultant, this was Livy’s paediatric consultant at our local hospital in Kent. We got the referral from our GP, due to Livy missing all of her milestones. The first appointment was fine, he didn’t dismiss our fears and immediately ordered for Livy to have a blood test done and told us the next steps. He also started Livy’s physiotherapy and occupational therapy referrals (although these did get lost within the system). Once we had the results of the blood test everything changed. That appointment was the worst, he gave us life changing news without any information. From that point on the relationship has been strained, I ask for referrals and it’s a battle, like any doctor he doesn’t know Livy very well, I know her best, but he makes me feel like I’m asking him to do the impossible when I am only asking him to do his job, everything has to be chased, appointments, referrals and even results. Luckily now we have most of Livy’s referrals in process, we should have to see him less and less. **Update-we are no longer under his care, as we no longer needed any referrals but he said he would keep us on his books just incase, did he, no, he discharged us!!!!!**
Secondly, we had a referral to a community paediatrician, they assess children with developmental issues. Our first meeting with him Livy was just one years old, he was brilliant and thorough, as a rule he won’t mark down that your child can do something unless he sees it at the assessment (which can be tricky as Livy doesn’t like new people and can be very shy) but he has another doctor there with him, so there is always someone watching out. At her assessment at a year old, he marked her as 6months old, some areas, she was better in, so socially she does well, but her speech is one of the furthest things she is behind in. At her review at 2 years old, she was marked at 12-15 month old, it’s encouraging to see the improvements that she makes, also that she is increasing at the same rate, it’s not dropping too much behind. That all being said the thing that I love about him, is that he is so thorough, he has the time to go through these checks, but also the time to check other issues, like her heart, that meant we were admitted and we got the secondary diagnosis of 2:1 AV heart block, mobitz type 2, then this time, he could hear my concern about her weight and height, he looked through her notes and made the decision to bump the appointment with her paediatrician so that we could get another test and referral done. He is encouraging but honest, most importantly he is friendly and approachable. The only down side is that he never schedules his appointments on time, I’m still chasing her 3yo review at 3years 4months old.
Other consultants, Livy seeing a Cardiac Consultant and Neurologist from the Evelina Children’s Hospital but at a clinic they run at our local hospital, so the big stuff (EEG, MRI) we have to go to the Evelina, but for the follow up appointment and ECGs can be done here in Kent. Like her community paediatrician, they also take the time to talk to you and listen to your concerns, more importantly they are incredibly friendly and they really put you at ease.
We do see some consults in the Evelina/St Thomas’s building and that is a faff but I’m grateful that I get to see them for free on the NHS when some people would have chosen to see them privately at the Portland Hospital.
It doesn’t matter who we see the things that I struggle with are, firstly having to chase appointments. There is only two departments that I don’t have to do this, with all the other I do, it’s frustrating, it’s a waste of my time, sometimes I do palm it off on Livy’s key worker from the hospital (I’m pretty sure that is her job, and to organise the Team Around the Child meeting). Why in this day and age can’t people have a system in place that when you say see you back here in 3 months you are seen in 3 months!!! WHY DO I ALWAYS HAVE TO CHASE YOU??
Secondly, when I question a consult on something that they have said, why do they need to get offended and put a black mark against my name? I may not be medical but I know my daughter better than you do. I may not know all the acronyms or terminology but I’m trying to learn. I may be asking because I don’t agree and want clarification, but there no need to get so wound up about, it seems non of these consultants are people persons, they have no bed side manner, I’m not trying to belittle you I’m just trying to educate myself.
Whenever I go to an appointment I always ask other 1p36 parents, for their experiences, what medications and doses/tests/treatments did their child have and I take that information with me. I’ll say the consultant I know that for this particular condition/treatment the average is this percentage but actually in 1p36 it’s much higher. They probably have never seen another 1p36 child, they have have never heard of it, sometimes it’s necessary for me to educate them.
So as a recap, we are lucky here in the UK to have the NHS provide us we so many consultants and specialists, but don’t be complacent, if it’s not working for you and your child, change it, you CAN request a change, you can complain to PALS, make sure above everything else that your child comes first.