I emailed sue maillard and she advised me to try and get help on these boards
I have copied the emails i sent to prof G and sue as I haven't got time to type it all out again
I am desperately needing some help
the aoppeal to overturn rachel's gosh referral was refused. I have no other options except I can make an official complaint but only about the appeal process not about the decision.
I was thinking about taking this to the papers as I dont see why they can allow one of my children to go to gosh yet refuse another
I have contactyed all local MSPs and MPs and they cannot help
this is a copy of the email i sent to sue
I am really sorry to bother you with this again, but we are needing some help
I have copied an email I sent to Prof. Grahame a few weeks ago. I haven't had any reply to it so was wandering if you could help
Our daughter Rachel's referral to GOSH has been refused again, and we were told that her paediatrician had contacted either prof. Grahame or physiotherapists at GOSH to discuss how we can deal with her care locally.
This letter ultimately sealed it and now they will definately not refer it. I am trying to get a copy of this letter as we have never had the chance to respond to it therefore I do not think we had a fair chance when we appealed the decision.
This letter claims that locally, NHS can cope very well with EDS, but we have an abundance of evidence to say otherwise.
I was just really hoping you could help in some way. I don't know what I expected when I emailed prof. grahame, but he did state in his report that he wanted Rachel seen at GOSH.
I am about to make a formal complaint to NHS Fife, but I can only appeal against the appeal process, not about the decision. I have been told there may be a slight chance they might repeat the appeal, so I would like to be ready and have as much support as possible.
I just feel it is so unjust and unfair that they say no to Rachel's referral. We have been told by so many people here that they know very little about EDS. At gosh you understand it all and we do not have to explain ourselves. Rachel has other problems that we have been told may be linked to the EDS, but no one up here understands that.
We also have to come down to GOSH with Rebecca for her check ups and maybe future 2 week rehab courses, so it would save us time and money getting Rcahel seen at the same time.
thank you in advance for any help
this is a copy of my email to prof. G
I am sorry to bother you again. I saw you at a private appointment with my daughter (Rachel/////) in june 2009. You diagnosed both of us with Ehlers Danlos syndrome type 3. You stated in your report that you would like Rachel seen at GOSH for the 2 week rehab course. My other daughter (Rebecca /////// has been attending gosh since august 2008 and still receives check ups and the 2 week rehab course yearly).
We tried twice to get Rachel referred and both times NHS Fife refused ( We are in Scotland and you have to go through your local NHS board for approval). We have appealed this on the grounds that Fife know very little about EDS and we have been let down so many times in past with them. Also we have to attend gosh with our other daughter so it makes sense and saves us travelling costs to get them seen at the same time. This appeal has been refused.
We have seen vast improvements in our daughter, Rebecca, since she attended the rehab course. Like I said Fife know little and coming to gosh was a last resort as we have been dismissed. In our eyes gosh is the best place to deal with this condition and we want Rachel to be seen and get the chance to make the same improvements that her sister has made.
Apparently our daughter's paediatrician, ////////////////, spoke with you and you said you could train up some Physiotherapists so that Fife were then able to deal with our daughter's condition locally and offer similar treatment to that avaliable at gosh?
We had no idea this had happened and are upset. Our Paediatrician said she would support our referral to Gosh. We do not want our daughter used as a guinea pig by people who do not know a lot about the condition. Fife would never be able to offer similar to gosh as they wouldn't be able to do the 2 week rehab course.
We have had to fight at every step to get our children some help and we love going to Gosh as we do not have to explain anything. Sue Maillard is FANTASTIC, as are the other physiotherapists there, and not once have we had to go over things and repeat ourselves. At gosh you understand how everything is connected to the EDS. Our daughter's have chronic constipation amoung other things which we have been told are connected. Doing the 2 week rehab course with our younger daughter, Rebecca, we learnt so many other things we did not know. This would not happen locally.
We also want to go to gosh because Rachel has a heart condition, which I have been told maybe linked to the EDS as well. At gosh you would incorporate all of this and help us understand better. In Fife it was totally dismissed and when we asked the cardiologist about EDS, she stated 'oh it's just a few aches and pains'. This couldn't be further from the truth. We have to deal with our children's conditions 24/7. It is for life and varies every day. they are suffering and in pain everyday and everytime we have tried to get help locally we have been dismissed or people are not interested.
I want my children seen by the best. And to us this means getting them seen at gosh.
I had to cancel Rebecca's check up at gosh on the 10th june this year as we wanted Rachel seen at the same time. i thought the appeal would have gone through, but it hasn't. Rebecca's appointment has now been changed to october and I did hope this would give us time to overturn the decision and get Rachel seen at the same time.
I would really appreciate your support with this matter. We are again trying to fight this appeal decision and I will not stop until they say yes. My 3rd daughter is very clearly showing signs of EDS as well and I would like to get her seen at gosh eventually too. My baby is 4 months and again, shows signs just like Rebecca did at that age.
I have 4 children and my husband who I look after (he has narcolepsy and cataplexy) and we have been let down for years by local medical staff etc. The only happiness and support we get is at gosh.
thank you for taking the time to read this and I do hope you can help and support us in trying to get Rcahel down to Gosh
Last edited by barkingmad
on Wed Jun 23, 2010 1:52 pm, edited 1 time in total.
Reason: Edited surnames and removed professionals name to protect identity of child mentioned and as we dont permission to use professionals name
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