question for michelle

jordansmum

hi michelle i wonder if you could tell me if kayliegh has seen the same specialist as jordan is going to see in bristol is it dr clinch (sp) only jordans consultant in poole wants him to be seen by him her as he is not to good at the moment arthur not behaving his latest mri scan is not good and they have now put him on max meth but would like a second opinion on his treatment are they good up there as i cannot fault his treatment down here. Many thanks jenny.

worriedmum

Hi there,
I know this was sent for Michelles attention, and therefore hope you don't mind my having read it and responded, but thought I may be able to help.
We live in Bristol and my daughters consultant is Jacqui Clinch. She has been looking after freya since she was diagnosed as a two year old and she is now nearly 5. Jacqui and the bristol team are excellent - at least in my opinion. We get lots of support and the physio (Ginny) and specialist nurses are really useful contacts too.
I always go to clinics armed with a list of questions and Dr Clinch never seems fed up with this and always answers my questions thouroughly. She works alongside Dr Ramanan, another consultant who does all Freya's joint injections. They have weekly multidisciplinary meetings where children are discussed and work really well as an entire team.
I hope you have the same experiences we do there, though, as I have discussed with Michelle in the past, I realise how lucky we are having this so close and not having to tackle a long journey to get there. Let me know how you get on. I hope they can add sometihng to Jordon's care and management which will make a difference.
Best of luck
Sam.xxx

jordansmum

oh thankyou sam you have put my mind at ease and no i didn't mind you butting in it's nice to know that there is someone who goes there , we live in bournemouth so bristol is quite along way for us to travel our specialists are really good but he wants to make sure with a second opinion that there is not anymore that he can do for jordan and he said dr clinch is one of the best. Maybe nearer the time you can recommend some where to eat lol. xx jenny

worriedmum

Hi Jenny,
I'd be happy to tell you anything you need to know about Bristol and the hospital before you make that journey. Let me know when Jordans appointment is coming up and anything you need to know and I'll help in any way I can.
Sam. x

jordansmum

oh thanks so much sam that wold be great

illihor

Sorry about the non reply, have to to get a new hard drive for my pc anyway I'm back now lol

yes we also see Dr Clinch and Dr Ramanan has done her joint injections both are fantastic. Helen Strike is the rhuemy nurse up there and she's brills too. I like Ginny the physio a LOT she is very helpful and explains things in a great way rather than do this do that she takes the time to tell you why.

We're up there to see Dr Clinch again on 21st October. Forever seems like we're going up there but I'm so grateful for that team and everything they have done for Kayleigh. Although it's a trek (2 hours by train for us) it is most def worth it and they only have to take a quick look to know where is swollen etc they are THAT good/great at what they do. Our consultant down here was trained by her and as soon as she saw Kayleigh new she needed that extra help, most other arthritis kids down here have not been referred up to bristol and don't understand why we have been.

They also do clinics down in our hospital but the october one for Derriford has been cancelled and they don't know when they will be down (will be def before xmas) but rather than make Kayleigh wait she's booked us in to her clinic up there how fab is that. I bet she will also do clinics down there for you. Oh and Dr Clinch is great with kids and really helps that she's got 3 of her own. I find that whole team very easy to talk to and any questions i have etc. Our stint up in the hossie was a brill experience even if long and tiring as not only did she get help physio, I got help in understanding it all which I thought my knowledge was good already but they really helped to make things so much clearer.

Def grab this opportunity and arm yourself ready with any questions as they are willing to answer and listen to everything you have to say. Be warned though first appointment you will get ALL the same questions you've already been through with your own hossie but it's def worth the time and effort and I am truly grateful for the care she is receiving from them.

Good luck with it all your in the best hands there

Michelle xxx

jordansmum

oh thanks michelle and sam it's great to know how others experiences are with dr clinch we are looking forward to our visit just to see if any thing else needs doing jordan is now going up to 20mg of meth now over the next couple of weeks just hoping he doesn't get any more side effects he has been on it now for 12 weeks and there has been no improvement so far hopefully with the increase there will be. hope you and your children are ok speak soon xx jenny