Urgent help needed! don't know what else to do

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Urgent help needed! don't know what else to do

Postby MandyG » Tue Jun 22, 2010 8:56 am

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

HELP


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this is a copy of the email i sent to sue
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Hi 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

Mandy ///////



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this is a copy of my email to prof. G
================================================================================================================
Hi

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

Yours sincerely

Mandy /////////
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
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Re: Urgent help needed! don't know what else to do

Postby Englishgremlin1 » Tue Jun 22, 2010 10:15 am

This one is tricky to advise you on as you have used the main channals and they are blocked. Certainly appeal and try and include in that some of the mess ups that have been made locally. It sounds like your consuiltant wants to help but cant so not much he can do unless he writes supportring your appeal.

Options I can think of:
Use the press - embarrass them
Private referral - but this would cost loads and most of us are not rich.
by pass the local MSP etc and go to the health minister.


Afraid I cannot think of other ways sat the moment.
If we can crack joints we can crack systems

Male diagnosed with Hypermobile EDS November 06.
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Re: Urgent help needed! don't know what else to do

Postby MandyG » Tue Jun 22, 2010 10:33 am

thank you for your reply

I have contacted various newspapers this morning, just waiting to hear back and see if they will run the story

I did contact Gordon Brown (as he is our MP for where we live), and Alex Salmond (as he is our first minister) and nicola sturgeon (as she is the health secretary).

the only one who tried to help was our local MSP, but he couldn't offer anything else, Gordon Brown and Nicola Sturgeon said it isn't anything to do with them as they only set out the policies for NHS, they cant comment on the decisions being made etc. Gordon brown never replied.

I would pay privately to get Rachel a first appt at gosh, but you then have to be referred on NHS if you want to swap to NHS. And if they saw no just now then they will say no again.

I had to pay privately to get Rachel diagnosed by Prof G as local NHS wouldn't diagnos her. I even paid prof G to diagnose myself at the same time as my local rheumy said I just had a pain syndrome, and was a hypochondriac, and I definately did not have EDS. Prof G thought otherwise.

I just want to scream!!

they are messing about with my children's lives. they could experience less pain that they need to by just being referred to gosh

xxx
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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MandyG
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Re: Urgent help needed! don't know what else to do

Postby MandyG » Tue Jun 22, 2010 11:21 am

Ihave just started up a facebook group, but I am not sure if it will help or not. At least it will get our problems out there

http://www.facebook.com/group.php?gid=1 ... all&ref=mf
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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MandyG
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Location: fife

Re: Urgent help needed! don't know what else to do

Postby barkingmad » Wed Jun 23, 2010 1:48 pm

HI Mandy,

I have PM'd you. :D
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Re: Urgent help needed! don't know what else to do

Postby MandyG » Wed Jun 23, 2010 6:51 pm

Thank you Donna. I replied just nowx
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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MandyG
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Location: fife

Re: Urgent help needed! don't know what else to do

Postby MandyG » Thu Jun 24, 2010 3:19 pm

well do you all want to know what the paediatrician said about us in her report the the panel? this letter ultimately sealed it for us. I quote

"In may, 2009 we had a multidisciplinary meeting regarding the family as I had concerns about the multiple symptoms that parents presented each time i saw each child. They interpret symptoms to be more severe or more impinging on quality of life than is the impression of the multiple health professionals that they see"

she goes on to say

"My view is that the parents are fully aware of how tomanage this condition and there is no difference in the management between the two children from the point of view of what exercises are required"

needless to say we are absolutely fuming about this. We no longer see this paediatrician. We turned up for the appointment in june to discover we were to now see a new doctor.

I am away to request a copy of any 'findings' from this so called multidisciplinary meeting, as we have a right to see what they all decided about us as a family. This is the exact reason we are getting no where up here. No one believes us!
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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MandyG
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Location: fife

Re: Urgent help needed! don't know what else to do

Postby WinonaLemonade » Thu Jun 24, 2010 4:36 pm

mandy that's awful, no wonder you're fumming. best of luck with getting it sorted :bday:
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Re: Urgent help needed! don't know what else to do

Postby Englishgremlin1 » Thu Jun 24, 2010 5:41 pm

I can only think of one thing -complain and go high!
If we can crack joints we can crack systems

Male diagnosed with Hypermobile EDS November 06.
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Re: Urgent help needed! don't know what else to do

Postby MandyG » Thu Jun 24, 2010 6:54 pm

Someone said to me that by law they have to inform you of any meetings regarding our children. I can gaurantee no one informed us of this meeting. Now understand why every report from the paed with have mentions myself and Gary and how we are doing and what our mood is like etc.

I am gonna request all reports about us from everytone I can think of...school, hospital, gp etc under data protection act?

I have seriously lost faith and trust in everyone now.

Spoke to CAB yesterday as we were there for becca's DLA renewal (which by the way was refused when I put original paed on, but they gave it to us when I put Prof g on)

they think i may have a case to take them to court but I have to discuss it further with them.

We have local paper coming tomorrow to take pics as they are running our story next week

xxx
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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MandyG
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Location: fife

Re: Urgent help needed! don't know what else to do

Postby Englishgremlin1 » Thu Jun 24, 2010 7:46 pm

Good for you- it may make them realise people need care.
If we can crack joints we can crack systems

Male diagnosed with Hypermobile EDS November 06.
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