Dd's orthopaedics appointment (or not)

[deepbreath]

Our GP referred dd for an urgent appointment with a paediatric orthopaedic surgeon back in Feb. She is due to be seen for a routine check up anyway in September, but is having lots of problems with her joints and back. New problems were emerging elsewhere too that were causing her a lot of pain and distress.

When I rang to book the appointment under the new booking system, I was told that there was none available in the time dd was meant to be seen (they try to see children within 6 weeks at our local hospital if the appointment is urgent, but the target is 13 weeks nationally), and that they'd be in touch when one was available.

I hadn't heard any more, so I rang them earlier today. At first, they couldn't find her on the waiting list. Then, a supervisor came to speak to me and said that the orthopaedic surgeon had REMOVED her from the waiting list. On Tuesday, I have now got to contact our GP and the surgeon's secretary to try to find out why she's done this.

It really isn't what I needed to hear when dd's been screaming in pain when her joints dislocate. If her knees pop out, I have to lift her and hope they pop back again (we'd have to go to A&E if they didn't). She's always been hypermobile, but the severe pain is new. So, how can the surgeon dismiss her without seeing her? Has this happened to anyone else?

I would be tempted to go to A&E next time anyway - the worst they will do is keep you in afew hours, give some painkillers and make an outpatients appointment... totally unacceptable, and if the gp doesn't know what has happened I'd be ringing the patient liaison service and crying down the phone. urgh.

I'd just ring the surgeon's secretary deepbreath; it's probably a mistake. I doubt the GP will have any idea about why she's been removed and would just have to refer you again.

The choose and book system is rubbish IME. dd needed to be seen by her ortho before June so we rang for an appointment but there were none available - not because they were booked but because they'd been purposely blocked. So I had to ring the the secretary who could unblock one and book it. Waste of time.

Hope you can get her seen soon - it's not on for her to be in severe pain.

Gosh, What alot of extra stress for you But like sagger says ring the secretary direct or e-mail sec or consultant direct.

The 13 week wait is (would if name not taken of list) already breeched so an e-mail to the chief exceutive of your local nhs trust would be benifical if direct contact doesn't get results.

Your poor dd! My ds2 has hypermobility on top of his bilateral talipes. He is coming up to 2 yrs and his knees are giving him alot of problems at the moment he wears peidro boots for his ankles.

I think this removal is just away to reduce the time targets but it is always wrong especially if a child is clearly in pain. I know that you have better things to do with your time but direct contact, in my experience, pays off.

Good luck

Really sorry to hear this. How old is your dd? It is quite common with hypermobility syndrome for severe pain problems to start up during one of the growth spurts (either 7 year growth spurt, preteens or puberty).

Also an orthopaedic surgeon may not be all she needs. Has she been seen by a rheumatologist? Is she getting physio? Is an Occupational Therapist involved? There are relatively few people specialising in joint hypermobility: the best known specialists are at Great Ormond Street Hospital and in Leeds, but they can advise more local people- they did for dd.

You need to ring the surgeon's secretary and get something sorted (be prepared to cry on the phone). Have been there, done this. Worry them until something comes up.

Thanks for all of your replies, they're all really helpful. I forgot to say that dd is 5.

Romy, I will be more tempted to take her to A&E if it happens again. It sounds mad, but maybe I've got a bit complacent about the joint slippages because they do happen so often!

Saggar, I agree about the choose and book system. When I rang the first time, there were no appointments. They asked if it'd be OK to ring me in case one came up, but that they might not be able to give me much notice (ie, appointment the day after they rang). They even mentioned the possibility of dd going private if it came to it.

Babalon, hope your ds2 is coping OK with his boots? They're so heavy! Dd has worn them for about 18 months now. She has just been given orthotic insoles too, as the boots weren't correcting her feet quite enough. They mean that she can manage to potter about at school without her Major buggy if she hasn't got far to walk, which is great.

Cory, dd's hypermobility is part of her marfan syndrome, so we've bumped into each other on other hypermobility threads How is your dd getting on now?
I think you've hit the nail on the head with the growth spurt thing, as dd's growth isn't on the normal scale anyway.
She doesn't get regular sessions with a physio, they average at about once a year (although she is brilliant! She's trying to get funding for a specially geared trike for dd). The physio wanted dd to see an occupational therapist, but as the waiting list is so long it probably won't be for a while.

When dd walks, it looks painful. Her hips roll inwards, her knees move sideways, and the insides of her ankles touch the floor (if she isn't wearing her Piedro's). On top of this, she'd had a bad fall at school and landed on the bottom of her back. I took her to the GP when some movements still hurt enough to make her cry over 2 weeks later. He thinks that dd has also got a gap in her spine that had previously gone undiagnosed

I'll let you know what they say tomorrow!

Update... I rang the hospital this morning. After being put through to several wrong departments, it turns out that the consultant's secretary is on holiday for another week. There was a number on her answerphone for urgent enquiries. I thought sod it, and rang that!

The orthopaedic surgeon is in clinic this afternoon, and all I had to do was ring dd's GP to ask them to fax across a copy of the referral letter directly to the consultant, as they had NO RECORD of dd ever being referred. Easy? Hell, no. You know what GP's receptionists can be like...

"It was the hospital's mistake, and we don't fax copies of letters".

I patiently explained that dd had been waiting in pain for several weeks past when she should have been seen URGENTLY. Receptionist mutters something about taking the fax number and a few details to pass on to someone else to deal with it "because we're very busy, don't you know?"

I will be ringing them in a bit to see if they've bothered. If they haven't, I will go up there in person and pester them until they sort it.