Problems referring my eldest

[MandyG]

OMG my husband and I are soooo P'd off it's unreal

I went to GP yesterday with my 6 yr old as I wanted to see if the reports from prof G appt had come in - they came in post in the morning which was good so the appt was now about starting off on his recommendations

he wants my eldest referred to sue's clinic at gosh which I thought would be simple enough as he has mentioned it in the report with exact details of how my gp should go about this

my gp had to apologise tome as there may be a problem getting my eldest referred to gosh

she claims we should never have been allowed to refer my 3 yr old (she has been under gosh care since auust last year) but it was lucky as I had an email from DR hasson saying we could just refer on NHS.

however, unbeknown to me, my childrens' paed had sent letter to my GP wanting to know how this was happening and who was paying??? as apparantly things like this are not done in our area

there also may be a problem referring my eldest to gosh becuase I took her for a private appointment with prof G and now want it on NHS

I cant believe this. I had to get reffered to gosh cause the paeds and physios up here were not listening to us, saying we were m,aking it up, saying there was nothing wrong with our 3 yr old - now look - she gets highest rate dla, she gets help at school, pre school educational home visitor and concerns over starting school etc etc etc and she has special needs buggy and special car seat


I made sure my gp knew the only way I paid for the private appts was using my husbands and 3 yr olds dla money AND cause nothing gets done up here. my kids have so many problems and not a thing gets done. At gosh I dont have to explain myself - they know by looking sat the kids what is wrong with them etc

I just dont know what to do now. My mum thinks I could go to the papers cause there has been a discrepency regarding the GP and she thinks I have P'd people off cause I would not settle for their diagnosis etc and I insisted on a second opinion and have stood on all their toes whilst doing so.

my children's paed is very off with me when I go in. so much so I refuse to go now and send my hot headed husband in (when he isn't having one of his narcolepsy attacks lol)

we only see her once every 8 months for 5 minutes and she thinks she knows my kids better than me and refuses to listen to the gosh reports

ggggggggrrrrrrrr

[muppet]

Hi,

It sounds like you are having a nightmare time, its so anoying when docs just will not listen!

We had trouble getting a refurral to GOSH to see a nephrologist with my son even though he is already being treated there for HM, I wanted him to go to GOSH because i could make the appointments on the same day. on this occassion the refurring hospital was Nottingham the reason for this was to do with money and which hospital they are funded to send to and so i had to have a private appointment for my son to be seen at GOSH.

I know this will be more money but GOSH do not seem to have a problem with swapping you from being private to NHS so could you make an appointment to see s privately and once diagnosed swap back to NHS.

I know it doesn't seem fair to do this, your child should be given the best treatment at the right hospital.

What alternitive did they give you?

Helen

[MandyG]

sorry for the late reply helen

they didn't offer me any other alternative

quite frankly I think they are just fed up woth me cause I wouldn't just take their first diagnosis and I have pushed and pushed and trod on all their toes so they are all annoyed at me

I might email sue and see what she thinks etc

xx

[MandyG]

just wanted to update this

got a call from gp last week and like we thought, our local nhs board have refused rachel's referral to gosh. I am sooo blooming annoyed at this. Just cause I stood on everyone's toes and got rebecca referred when I shouldn't have done that.

The local nhs board here think that we have physio's up here who can deal with her problems so why should they pay for us to go to gosh

I cancelled becca's gosh check up in december and got it pushed back to june 2010 (mainly cause I will be very heavily pregnant in december and am not doing that trip in that state

so I now have a year to get this gosh referral done. Apparantly they might refer rachel to gosh if we see local physio but aren't happy with it.

xxx

[MandyG]

I just wanted to add to this

my daughter's second referral to gosh was refused at beginning of this year so I am in middle of appealing it

I shouldn't have to be doing this and it is really annoying me.

I had to write to the top man at NHS fife and have just written my reply to the original panel's notes. They claim they can do similar exercises up here as they can at gosh, also found out the paed and physio agree with them despite telling us they would support our referral

I will not stop til they say yes. They say they wont fund it, but I have told them it is ME who has to pay the travelling expenses etc (we have to fly down as I have to take all the kids as I cant leave them with Gary due to his narcolepsy and cataplexy), plus we are there with rebecca anyway, so it is very unfair for rachel as she sees her sister on a course she should be on.

we also get no support up here at all and everyone involved with rebecca just abandoned her. The only support we get is from gosh plus we get to meet other HMS families which is priceless and can never be achieved locally.

I really hope this top man sees it my way and overturns this decision otherwise I am going to our local MSP etc etc etc. My daughter will not be able to live a full life until she gets to gosh as the local medical people know nothing about hms and those that do just claim it's just a 'few aches and pains'.

rant over - just wanted to update

we also know our 3rd daughter has it but yet to be written on paper, and our little baby is def showing signs too.

gggrrrr

xxx

[Phii_x]

I'm so sorry you're having trouble getting referred!

I'm quite a bit older than your daughter (I'm 15) and I was first diagnosed at 12 I believe at a private appointment with a local doctor. Back in December 2009, my condition got a lot worse so I went to see Prof G in a private appointment, who referred me to see Sue in a private appointment, who said I needed the 2 week rehab and we had 2 choices, try and get referred on the NHS or pay £22,000
Luckily I got referred pretty easily, but I guess I just got lucky.

All I wanted to say was, keep fighting for it. It will definitely be worth it! £22,000 they will have to pay, compared to the amount of healthcare she will need in the future if she doesn't get the treatment she needs at GOSH. I'd try and make it clear to them that, for everybody concerned, its better that get its back now before its too late.

Good luck!

[barkingmad]

Hi Mandy,
I dont blame you for feeling frustrated. I too think the GOSH way is the only way to try. It has done some good things for my daughter and I really wish my eldest had been seen at GOSH instead of UCH.
Keep going I am sure you will get what you want soon.