NobbyNobbs Report post Posted June 6, 2008 i got a call from my local (ha!) diagnostic centre for Asperger Syndrome testing today, saying they'd got my referral from the GP, but in order to have the testing under the NHS i had to apply to my care trust and they would decide if i was worth spending the money. has anyone else had experience of this and whether it gets passed through straight away or are likely to say no? the cost of the test privately is near �800 which my parents say they'll pay if i can't get NHS funding (but i'll never let them). but i've also heard that government things dont accept private diagnosis for official things like DLA. anyone got any knowledge on this as its my next step. i think i'm looking at a complicated diagnosis, as i have also now been diagnosed with dyslexia and hypermobility, and its looking like i have lots of the named specific aspects of aspergers like SPLD. i'm completely lost on this now, and running out of steam to look into things thanks Quote Share this post Link to post Share on other sites
Enid Report post Posted June 7, 2008 sorry got a bit confused is it for you or your child? I`m easily confused tho! I just rang my doc and said can my son be referrred, he said yes, no mention of money, he went for a 4wk assessment, he stayed for 10!! as he was excluded from school and they had the place. sorry cant help but someone will surely be along in a mo! good luck <'> Enid Quote Share this post Link to post Share on other sites
NobbyNobbs Report post Posted June 7, 2008 its for me, and as an adult i get royally somethinged as there are pretty much no services for adults (dont get me started on why i'm an adult and only now getting diagnosed!). so i used the NAS website to find the nearest diagnostic centre, and got my GP for refer me. now they've called back saying to get it done i need funding and i have to apply to the primary care trust who will vote on it or something. i have some form of diagnosis from a 2 hours psychiatrist thing, and then an educational psychologist confirmed my performance and verbal IQ things match the AS style, but this doesn't seem to be enough? both of those were paid for privately by my universities lovely disability office although the psychiatrist works part time private, part time NHS. so far the input from the NHS has been a GP who said that AS was an excuse and the kids just needed a slap... even though i'm not a kid and got plenty of slaps when i was one! what happens in child diagnosis? i guess this seems quite important to me because based on my reading and what the people in the know have said my AS is actually on the bad side rather than the good, and after 22 years of struggling i want a solid reason so i can start working round it all. Quote Share this post Link to post Share on other sites
Kathryn Report post Posted June 7, 2008 Hi Nobbynobbs, I'm moving this to Beyond Adolescence as you may get more replies there from people with experience of adult diagnosis. K x Quote Share this post Link to post Share on other sites
Enid Report post Posted June 7, 2008 Hi again, with my son it was a series of questions/interviews with me and observation/interviews with him. Good luck. Enid Quote Share this post Link to post Share on other sites
Delyth Report post Posted June 23, 2008 Hi My husband has just been through the diagnostic process. He is 45 yrs. We managed to get funding through the NHS but it took about a year. On our request our GP referred him to NAS Lorna Wing Centre in Kent. The learning disabilities (LD) team agreed to pay for the diagnosis. Our GP put the request to the LD team and they agreed, we didn't apply ourselves directly. Once the centre received confirmation of funding from the LD team, my husband was given an appointment for assessment. We have been chasing funding for counselling support since the diagnosis and have had to go through our PCT Exceptional Treatment panel as the LD team can only fund adults who are unable to live independently. Our GP and practice manager has applied for the funding rather than us. They have been very supportive but it has taken two more years. We are just waiting for final confirmation of funding this week. I think it is possible to apply for funding through the mental health team too - depends on your PCT organisation I think. We decided to go through the NHS because we were a little concerned that relatively able adults with autism, like my husband, who do need support in some areas of their lives even if able to maintain employment, are 'hidden' and there are few services available or being developed for them. But it's not been an easy option... endless bureaucracy! Good luck with your search - the private option has it's appeal! Delyth Quote Share this post Link to post Share on other sites
chill2computer Report post Posted July 5, 2008 I had to ask for PCT funding but I was turned down I then got in touch with the national Autistic directory for a private assessment, I was diagnosed with the leading edge psychologist and was lucky my GP accepted this diagnoses. It will depend on your GP and other health officials whether they accept private diagnoses or not. The Leading Edge also take NHS referrals through the PCT funding. I was told by the leading edge psychologist, it was disgusting that I was not diagnosed earlier because it was obvious I fit the criteria. Be careful of the Mental Health service, they diagnosed me with schizophrenia in my early teens, psychosis in my early twenties, personality disorder in my thirties, finally was diagnosed with Aspergers. This is not uncommon for adults with Aspergers to get these labels before being diagnosed with Aspergers. The reasoning for so many mistakes is because Aspergers was not well known when us adults where children. Not sure if any of this information helps you. Quote Share this post Link to post Share on other sites
NobbyNobbs Report post Posted July 7, 2008 unfortunately my GP is not to be relied on. when i told him what had happened at university and how i had a provisional diagnosis from a psychiatrist he said that autism didn't exist and that i'd been given the provisional diagnosis to shut me up and people just gave out diagnosis for ASDs because it was flavour of the month so i bet he'll use any excuse to not recognise a private diagnosis. i've seen another doctor since who's referred me to the mental health team, but given no specific time-scale for anything, and didn't know if they'd do anything about it, but would 'decide if i needed a diagnosis'. so my mother is now forcing me to go back to the GP and ask for the application for funding be made. i really dont want to go back so he can shoot me down again, but it seems the only option left to get anything done in the next few months. its just very frustrating that noone will just get on with it and sort this out. if i went and said i thought i had cancer they wouldn't take months to decide whether they wanted to find out if i did! Quote Share this post Link to post Share on other sites
TheNeil Report post Posted July 7, 2008 �800 seems a lot. I know it's going back over two years but my private dx was less than �300 and the psychologist (who I'm still in contact with - so she hasn't just run off with the cash) assured me that private diagnosises are accepted when claiming for benefits, support etc. How true this I don't know (I don't claim for any benefits and, as you rightly said, support for Aspie Adults is just a joke - when the NHS did finally catch up I got a relaxation CD. Oh how that's helped...not) and how you navigate the (seemingly) tortuous road to get the NHS to fund a dx is another unknown to me, but you might find that the private option is not as expensive as you've been led to believe (or maybe I just got lucky). Either way, good luck Quote Share this post Link to post Share on other sites
Tally Report post Posted July 8, 2008 When I was seeking assessment over a year ago, I was advised that the cost ranged from �300-�1000. I paid �600. If higher cost indicates a more thorough assessment, then I reckon it's worth paying if you can. Quote Share this post Link to post Share on other sites
TheNeil Report post Posted July 8, 2008 If higher cost indicates a more thorough assessment, then I reckon it's worth paying if you can. That's a big 'if' though Quote Share this post Link to post Share on other sites
Tally Report post Posted July 9, 2008 Which "if" is the biggest one? Quote Share this post Link to post Share on other sites
NobbyNobbs Report post Posted July 9, 2008 ive made the appointment to see the GP on the terms that if he is negative again i get to write a letter of complaint to the practice. what really bothers me is that all the steps so far were paid for privately by my university. he saw no paperwork, didn't ask for any details and questioned the professionalism of the psychiatrist who actually works part time for the NHS and does private work for the university to help speed up referrals within the disability office so its not like i've got a letter from the tea-boy! unfortunately i just dont have anything to spend on a private diagnosis and i will not ever ask my parents. they said they'd put it on their credit card and i'm not having them paying something like that off for the next 3 years because the NHS can't sort its act out. so i'm back to playing the waiting game, but i'm sure i'll get there eventually, or go mad waiting Quote Share this post Link to post Share on other sites
