Referrals for children to GOSH under 5

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Referrals for children to GOSH under 5

Postby Natt » Mon Jul 26, 2010 9:02 pm

Hi everyone

Just to share with you a letter I recieved from GOSH:

"This service can no longer routinely accept children under the age of 2. Between the ages of 2 and 5, we will only accept referrals for Ehlers Danlos Sydrome types I (classical) IV(vascular) and VII. Patients need to be symptomatic with musculoskeletal pain, and a paedtrician needs to have identified and addressed problems caused by generalised developmental delay, cardiac abnormalities and neurological abnormalities"

Luckily we have a good plan in place under our local hospital with physio, OT, orthotics etc as we have another 3 years to wait.

Natt
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Re: Referrals for children to GOSH under 5

Postby Alison C » Wed Jul 28, 2010 10:03 pm

Just a thought - is this the HMS Clinic at GOSH? I am wondering whether it could be the paed rheumatology department instead, not specifically the HMS Clinic. Can you check this? If necessary, do phone SM - she is lovely.

Alison
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Re: Referrals for children to GOSH under 5

Postby Rosie » Wed Jul 28, 2010 11:46 pm

Hi all

HMSA is checking with GOSH and will post about it when we hear back.

Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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Re: Referrals for children to GOSH under 5

Postby Alison C » Thu Jul 29, 2010 7:26 am

Oh thanks Rosie - I cant believe this can be true. I sent a pm to Barkingmad about this. Glad HMSA is taking this on board.
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Re: Referrals for children to GOSH under 5

Postby Natt » Thu Jul 29, 2010 6:29 pm

Hi,

The letter is from the Rheumatology team, but it says RE: Referral for Hypermobility Clinic

So guess it is the actual HMS Clinic.

Natt
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Re: Referrals for children to GOSH under 5

Postby barkingmad » Fri Jul 30, 2010 10:58 pm

We are waiting for official response from the team at GOSH. But it isnt really surprising news as until fairly recently children werent diagnosed consistently with HMS before the age of 7. When we say consistently, I mean our own medical advisors felt uncomfortable with diagnosing children as young as 7 but it has gradually become younger and younger.

As you all know children are extremely flexible anyway, some of this flexibility disappears as they strengthen and grow, those who suffer from chronic pain everyday are the children that need to be assessed and treated as soon as reasonably possible. It is also well known that GOSH has been receiving a lot of referrals for the clinics and despite running extras they still have waiting lists of several months.

I know that I am no longer suggesting people are seen in Leeds, but suggesting referrals to GOSH so if lots of people are doing the same then it means that strategically the clinic would be unable to cope. However as we said we are waiting for the official response. :bye:
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Re: Referrals for children to GOSH under 5

Postby GateGipsy » Sun Aug 08, 2010 9:27 pm

Just wondering if you had heard anything more?
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