Do you think I'd get a referral to GOSH?

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Do you think I'd get a referral to GOSH?

Postby emmasmum » Tue Mar 16, 2010 9:10 pm

My daughter is 14. She was quite late with her milestones physically (JUST sat at 9mths, crawled at 13mths, walked at 22mths).
When she was 6 the paediatrician thought she might have dyspraxia. At the joint physio/ot assessment we were told she had hypotonia and joint hypermobility. They said she coped really well with it but things like sitting/holding a pencil etc would be harder for her than it would for her peers. They gave us a leaflet, an excercise sheet for core stability and recommended a sloped writing board at school then discharged us.
When she reached her teens she started having knee pain. GP said it was growing pains and perfectly normal. She did have a few sessions with a private physio but they weren't really helping and I couldn't really afford it so stopped.
Then she also developed intermittent hip and back pain. I was also worried about her very rounded shoulders.
GP said growing pains again and to keep reminding her to pull her shoulders back.
One night she was in tears with the back pain - it's in the middle of her back rather than the lower back. I asked my husband to take her to the GP this time and he said back pain is taken very seriously and has referred her to orthopaedics.
I was hoping this might lead to a physio referral, but I have recently heard about the GOSH clinic and the two weeks intensive physio and wonder whether we could get a referral to that.
Does the referral come from the GP or is it possible the orthopaedic guy might refer on?
Is she bad enough do you think? She's had no dislocations and has none of the bruising problems. I haven't been told what she scores on the Beighton scale but reckon it's about 6 from what I've read.
I would welcome any opinions,
Thank you

Carol
modnote: topic moved to GOSH subforum
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Re: Do you think I'd get a referral to GOSH?

Postby Alison C » Wed Mar 17, 2010 1:48 pm

Hello

I am sure a referral to GOSH would be fine - please see my reply to Natt below this message or thereabouts as it lists reasons for a ref to GOSH.

Not sure about whether GP can refer - I think they can when looking at the GOSH website. You may have to give solid arguements why locally it not OK. Rheumatology is preferable to orthopaedics locally.

Your daughter's pain, hypermobility etc could well warrant a referral to see Sue Maillard who has seen thousands of us and is so helpful.

Good luck!
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Re: Do you think I'd get a referral to GOSH?

Postby Alison C » Wed Mar 17, 2010 1:49 pm

How do I argue for an earlier referral - is the message I was mentioning under Parenting Children etc
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Re: Do you think I'd get a referral to GOSH?

Postby Fizz » Wed Mar 17, 2010 11:26 pm

Hi, emmasmum,
I'm fairly new to all this stuff but my youngest son, aged 10, was recently diagnosed with benign joint hypermobility syndrome and like your daughter he presented with severe mid back pain without any dislocations. We had a bit of a run around to get a diagnosis and I was surprised whe nwe got one as I'd never thought he was hypermobile (although that may be because I am a bit hypermobile myself and so just thought we were both "normal").

He completed the 2 week physio rehab at Great Ormond Street at the end of February and they have made a big difference. Previously he'd been getting worse and worse until he could hardly walk and could not cope with school, and now he's much more mobile and has just gone back to school full-time. I can't say everything is wonderful as he's still having a lot of pain and I think it's going to be a long haul before he feels he's getting better, but as his parents we've seen a great improvement and we're hoping to keep building on that.
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Re: Do you think I'd get a referral to GOSH?

Postby jakerleen » Tue Apr 20, 2010 3:48 pm

Hi not been on for ages and could do with some advice.

Dom is 13 in July and was dx with HMS/HEDS about 3 years ago now. We have struggled withc docs and pain constantly, he is in agony most of the time now with legs and hands and back etc. His immunity is impaired and the school is giving me a hard time. It seems he could have the start of osteo-arthritis at the top of the neck and spine ...... even though the GP insisted his posture was causing the pain, instead of realising the pain is causing the posture.

He goes to Birmingham Childrens on Monday for an appt with rheumatology, considering he has been ignored for goodness knows how long I am expecting them to be unco-operative. The GP is requesting that they apply for a referral to GOSH, which I have asked for and keep being hung out on.

Is there anything I need to know about getting this appt? Such as are there any reasons they won't allow him an appt or would refuse to help us?

If they do say "no" then can i get a private appt? Does anyone know the cost of this? I am just at the point where I need him to see a doc who knows what he is going through and that will actually do something to help him. I am tired of battling everyone in the system just to get help for my son.

Jackie xxx
41 with HEDS, autonomic dysfunction, IBS, migraines, fibromyalgia, osteoarthritis, high blood pressure, underacive thyroid
Son 13 : HEDS, autonomic dysfunction, IBS - appt UCLH 27.4.2011
Daughter 19 : HEDS -awaiting appt UCLH
Dad : HEDS
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Re: Do you think I'd get a referral to GOSH?

Postby rebeccagraceson » Wed Apr 21, 2010 9:31 am

Hi Jackie

Maybe it would help you to know that your GP can refer you to GOSH. It doesn't have to be consultant referral, so regardless of what happens at the appointment you can walk in to your GPs office and walk out with a referral to the hypermobility clinic at GOSH.

Becky
xx
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Re: Do you think I'd get a referral to GOSH?

Postby rebeccagraceson » Wed Apr 21, 2010 9:33 am

Oh, and unfortunately you can't get a private appointment to GOSH. If your son has been diagnosed already then there is no reason why you can't get referred there on the NHS and if he hasn't, the same - just harrass your GP :D

Becky
xx
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Re: Do you think I'd get a referral to GOSH?

Postby jakerleen » Wed Apr 21, 2010 11:26 am

thanks Becky xx

Doc told me he cannot refer me he said the rheumy has to, insisted he cant. I have tried to get one from them for him for 2 years now and this is the best answer I have got so far. So if he can what can I say to him to get it sorted out hun? Preferably I don't want to abduct him and force him to do as I want, but if necessary I will :wink:

Jackie xxxxx
41 with HEDS, autonomic dysfunction, IBS, migraines, fibromyalgia, osteoarthritis, high blood pressure, underacive thyroid
Son 13 : HEDS, autonomic dysfunction, IBS - appt UCLH 27.4.2011
Daughter 19 : HEDS -awaiting appt UCLH
Dad : HEDS
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Re: Do you think I'd get a referral to GOSH?

Postby rebeccagraceson » Thu Apr 22, 2010 9:03 am

:D

You could just say you've spoken to GOSH who have told you it's fine for a GP to refer! What can he say to that? Maybe it costs the practice or PCT something to do a GOSH referral so he's trying to palm it off elsewhere - but whatever he says he CAN refer you!!

Can you see a different GP? Failing that, I would do the tiresome but occasionally necessary thing of making an appointment every day where you ask him to refer your LO to GOSH until he gets fed up of palming you off and just makes the appointment!!

Becky
xx
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Re: Do you think I'd get a referral to GOSH?

Postby WinonaLemonade » Thu Apr 22, 2010 2:57 pm

my gp wouldn't refere me to the pain clinic once so i just went on and on about it and he got a bit anoyed and refered me, we scowled the whole time he did it :lol:
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Re: Do you think I'd get a referral to GOSH?

Postby mobilemum » Tue Apr 27, 2010 1:00 pm

Yes your GP CAN refer you. I just pointed out to my GP that my DD scored 9 on the Beighton Scale and had already had trouble with three joints that are not even tested on the scale. The appointment took about 8 weeks to come through.

I think the GP needs to list all the reasons for the referral and then it is up to the clinic whether to accept it or not.
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Re: Do you think I'd get a referral to GOSH?

Postby MandyG » Sat May 01, 2010 10:19 am

I feel like I need to add to this

Carol - where about in UK are you?

if you are in england then you definately can just go to your GP and ask to be referred to gosh. You could try emailing the doctors at gosh first so you had a printed reply from them which details how to do the referral. This is what I did with my first daughter when she was 2, however, I live in scotland but my GP had just come up from Leeds. She did it as this is what happens down south.

This is not the case in scotland. You can ask for a referral but it has to go infront of the local NHS board who then discuss it and then decide whether they will fund the referral. My 2 yr old managed to escape this due to my GPs error so thankfully she was seen at gosh and has continuing care there

I have tried twice to get my 7 yr old referred and they have said no both times. Currently in middle of appealing this decision as they claim Fife physios can do what gosh can do - this is utter rubbish as we have been let down so much by local people, the physio even admitted they couldn't do what gosh did etc etc etc

I just needed to add this as the referral process is different in different countries. I am so angry about this all becuase prof G wants my eldest on the gosh course (I had to pay privately to get my 7 yr old diagnosed when we were down at gosh with my 4 yr old)

You can pay privately to get on the course bu it is something like £20 000. When we were there there was a couple from denmark who came as a last resort for their twins. Thay paid for it. (I also know cause I asked the physio Sue Maillard if I could pay if the NHS refused my eldests referral.)

we are all entitled to a second opinion. And gosh is the only place where they know it all about HMS/EDS. that is how I feel anyway. I wont give up until they say yes. I also have to go about referring my 3 rd daughter and later on my baby adn they all have it. Not looking forward to that

good luck

xxxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
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