Hello all; back in the summer we were referred to the Surrey Clinic for diagnosis and we thought that everything was in control; we were happy that the medical professionals were supporting our twins.
Today we have discovered that funding has been refused for our referral; so instead we will be seen at Gt Ormond Street ( who previously did not want to see us as they feel they are not equipped to diagnose FAS).
Can anyone tell me how they got funding for the Surrey FAS clinic please? We have been advised that a referral is thousands of pounds - has anyone got anymore info?
I would be very grateful - at the moment I feel like the rug has been pulled out from under our feet!
Thank you.
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We have got a referral for surrey and our GP has managed to get funding approved. We've been told that the cost for the clinic is £3,000 which we decided if we couldn't get funding we would beg, steal or borrow but luckily our wonderful GP found the right evidence to back up our application and we were informed that we didn't need special funding as long as our GP is happy that our son meets the criteria set out in the BMA Board of Science Fetal Alcohol spectrum disorders A guide for professionals June 2007, which he does, then the funding will automatically be approved much in the same way as a hip replacement operation would be. I hope this helps.
We are in a similar situation, having been refused funding for fasd diagnosis. What was the 'right evidence' referred to in your post and what criteria did your son meet?
You don't need to go to Surrey for diagnosis and assessment; your local paediatric team can help. Email fads trust at familysupport@fasdtrust.co.uk for advice
Our GP used the BMA Board of Science Guide to get our funding agreed and it was our local health authority that stated to us that we did not need exceptional funding as long as our GP believed that our son met the criteria set out in the Guide. Luckily for us our GP was wonderfully supportive and he too was very frustrated that our local teams wouldn't help us. We had been refused an appointment to be seen by the local Paediatric teams despite being under them in the past and we weren't deemed as desperate enough to be seen by our local CAMH team. Our GP was determined to do whatever he could to get us help both for our sake as well as our son, so the first thing i would suggest to you is to find a really supportive doctor and then speak to them about what I've mentioned and see if they can help.
I hope they can help you and if there is anything else i can help with then please don't hesitate to ask i'll help if i can.
If so, you can apply to the Adoption Support Fund for FASD assessment. Take a look at the ASFund website, and you'll see that specialist assessment such as FASD is one of the examples given.
You will need to apply via your post adoption support worker.
But it is a really quick turnaround and within a week of the application being received at ASFund you will know the decision.
Don't hang around though, as the adoption support fund is only guaranteed to be funded by government for 12 months (end of April 2016) ... so we don't yet know if there will be money available after that.
Hi, just to say I got funding for both my adopted daughters, from my area (not Surrey) to go there. I went to the paediatrician and explained what I thought the diagnosis was and (having corrected him on there not needing to be facial features !) I then asked him for a referral to the clinic in Oxted. It had to go to a funding panel - but they said yes. As Mummyclean says, it's not hugely expensive (we too were ready to beg or borrow!) so they really should be able to fund it! I'd try again, maybe through a paediatrician? Have conviction and just keep on asking. Something I've had to learn along the journey.
Hi, i cannot help you with where to find funding directly. Have you considered contacting Sir Barry Carpenter he is one of the leading specialists in the field of this condition. He has written an excellent book and I am sure he might know where to go and how. I'm sure you could find his contact online.
I am relieved to see that most of you agree that the assessment is around £3000 - that is what we were told originally - though our local health commissioner (or whoever made the decision) say it is nearer £10,000 each ! With twins £6k may be doable but £20k is a different ball game!
We have got a appointment with GP soon to look at another referral & I am trying to speak to someone at the Surrey clinic with regard to possibilities of part or self-funding. We are also due to speak to our SW this week.
After that I will definitely look at alternatives such as Sir Barry Carpenter, writing to MP etc!
I will keep you updated - thank you for your help.
really puzzled as to why Great Ormond Street feel they cannot diagnose as they see loads of kids and diagnose FAS a lot. Also, why can't your local Paediatric team diagnose? I would drop a line to familysupport@fasdtrust.co.uk and tell them where you live and ask who is nearest to you.
Well, 3 months on and I am happy to report that after much too-ing and fro-ing we now have confirmed appointments at GOSH for full assessments for the twins; we were never able to find out why the boys were 'too complex' to be seen locally, why the funding for Surrey was refused or why GOSH originally didn't want to see them.
As with many adopted/fostered children we do not have full histories for the boys (Mum's drinking is hardly mentioned as that is in her personal records) and there is evidence of learning delay within their birth families that does not involve FAS so we are studying hard to try to show without any doubt that the boys are on the FA spectrum.
We want to show as many PHYSICAL examples of FAS as possible to stop professionals jumping down the safe 'attachment & past trauma' route; which they do as soon as we talk about learning delay/behavioural problems. The boys haven't really got obvious facial features (which we know is not imperative), but they do have crooked little fingers, flat feet & a dimple at the top of their bottom crease (which I am sure I have heard Julia refer to before). One has an innocent heart murmur, one a squint, both have speech delay and hearing issues, problems with motor skills & gait.
We have read the BMA Board of Science FAS material & listed every behaviour and problem that the boys have. We have the Autistic & ADHD confirmation & have seen the Genetisist to rule out other factors.
What I am asking you good people is; you are the experts! What should we be mentioning first? What in your opinion are the defining symptoms that have been most important to you in your FAS journey?
If we can get this diagnosis now we believe we will be able to change to a specialist school in September which is our aim as it would be fantastic for the boy's learning & self-esteem.
I hope you read this and think 'yes, there is one thing I can suggest!"
You might also want to refer them to the Coram BAAF journal and point out that most kids who are adopted have FASD not necessarily trauma and attachment issues; although they might have them on top, that is not the primary diagnosis. corambaaf.org.uk/journal
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