NHS questions

andylambs
andylambs Member Posts: 71
edited 19. Apr 2010, 11:27 in My child has arthritis
Hi,

My name is Andy. My daughter Philippa is 6 years old. She was diagnosed with JIA at age 2. She's now classified as Extended Oligoarticular. She's had flares in her knees, wrists, elbow, hip, jaw and multiple finger joints.

She's been a variety of different medications over the last 4 years; ibruprofen, naproxen, piroxicam, prednisone, prednisolone, methotrexate and now Enbrel (Entanercept). She's also had several steroid injections in various joints.

We presently live in the USA but we're hoping to move back to the UK this summer. I know that the pediatric rheumatologist team here will make sure all the documentation we need recording her medical history will go with us when we move.

My questions for the forum:

Have any of you moved countries like this? Any advice?

We'll be living in North Hampshire (right on the Hants/Berks border) does anyone know what pediatric rheumatology dept we'll be referred to? I've tried researching it on the various NHS websites but it's not easy; it looks like it might be Oxford John Radcliffe or Great Ormond Street.

When your child has a flare how quickly does the flare get treated?

Are we likely to have problems getting past the GP to be referred to a pedatric rheumatologist?

Any and all advice is very gratefully received. TIA

Comments

  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Andy

    Welcome to the forum. I cannot help really but let's hope others can, on here. Both those hospitals you mention I have of course heard of and they have a good reputation.

    I would not think that you would have any problems getting past your new GP here to get a referral to a pediatric rheumi, especially as Philippa is already under their care, where you are now.

    There are people on here with children who have been diagnosed with JIA. They will help you all they can. They do not call in that often because, naturally they are busy.

    I wish Philippa well,

    Best wishes
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Thanks Elna. Always nice to meet a local!
  • butterflywings
    butterflywings Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi Andy

    My daughter (who is 9) has oligoarticular juevinile arthritis (diagnosed when she was 15 months old). We are based near to Bristol Children's Hospital and they are always at the end of a phone.

    Initially my daughter had to be referred through a GP, but once they are then the hospitals move pretty quickly. You may get an initial assessment done once you move over here, so that the 'local' consultants can catch up with your daughter and as you said all past medical notes will come over with you.

    As you know where you will be moving to, it may be worth contacting a children's hospital (say Bristol) and just asking them which would be your 'local' hospital for your daughter - I think that's what I would do - unless of course someone else on this forum already knows of one.

    There is obviously different ways of doing things from country to country but your daughter will be treated with the best care whichever hospital she ends up going to.

    All the best with the move and I hope to hear from you soon.
    x
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Thanks very much Butterflywings. I think calling a hospital is a great idea. I'll try that tomorrow if I get a chance.

    We have an MRI scheduled for tomorrow to find out exactly what's going on in her jaw. So tomorrow could be a busy day!

    Cheers,
    Andy
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Good luck for the scan tomorrow, I hated my daughter having the GA but needs must. Here we are under our local hospital in Plymouth but also under Bristol Hospital. In fact consultant from bristol is coming down here on Friday to do a clinic, so even if you are under your local hossie you might you could always be referred to a more specialised one.

    As for flare ups, we just deal with it ourselves. We've never been told to call up during one. We've been told we may use hydro if needed but I've never been able to get her in on such short notice. My daughters flare ups generally last at least 2 weeks :( She's currently on methotrexate via injection every friday, and on ibuprofen. We give paracetamol on school days or days out with the family as we find she can't cope without it. She's also on omeprazole, movicol and folic acid to cope with the side effects.

    My daughter is 4 and was diagnosed last year with polyarticular and has it in over 30 joints :(

    Another thing try and get as much meds as you can to come over with along with a letter stating what their for etc for both customs and your own gp's. Then as soon as you can register with a GP and try and get the meds on repeat prescription till you get referred to a hospital the last thing you want is to be stuck without meds and for her to go into a huge flare up etc.

    Good luck it's stressful enough moving house let alone overseas let alone with a child that's in pain. Good luck with the flight too.

    Michelle
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Thanks very much for all the info Michelle. 30 joints - that's dreadful. I've never bothered to count the individual joints. It would depress me too much.

    The MRI was rather traumatic we did it without a GA. Everyone thought she could stay still - and she did :-). But the IV slipped and the contrast didn't go into her vein but into her flesh instead which was painful and then she needed another IV in the other arm.

    What with the IV pokes and the normal Enbrel jab her arms look like she's been shooting up all weekend. Fortunately the school know all about it. Otherwise I can just see us answering some pointed questions!