Adult Private Assessment

[ScienceGeek]

I have my appointment with the CMHT next week at the drs. I want to do some research on private options though if getting a dx on the nhs doesn't work out. I don't think I've got the fight in me to push for very long to get it. I've had to fight for resources for other conditions and I just don't have any energy anymore. The dx would be helpful to me personally to know for sure and so the people trying to help me have a better idea of my strengths and weaknesses not picked up by my Ed psych report. Anyway this information seems pretty hard to get hold of, who would I go to? price estimates? Preferably closer to home but willing to travel to the south east if needed (will have somewhere to stay).

[Tally]

The NAS have a telephone and EMAIL helpline, and can give you a list of private diagnosticians. Make sure you make it clear you are seeking ADULT assessment. Include your full address, including postcode. It's worth mentioning that you can travel to the South East, as there are likely to be more services there, especially in London. They were only able to tell me of 3 professionals in Devon, Cornwall and Somerset, and two of them were in Penzance

 

You would need to contact people to find out how much they charge. The NAS told me it can cost from �300 to �1000, but I paid �600 and had to travel to Kent.

 

You sometimes need a referral, even to be seen privately. It's unlikely your doctor would object to this if you are prepared to pay for it.

[Mumble]

You need the Autism Services Directory from the National Autistic Society. You should be able to find professionals in your area. It will also give you an idea of who will take NHS referrals which might be useful to you to have as a backup, so when your PCT says they don't know who to refer you to, you can say - haha, I do, and hand them the list. There's a recent thread in Off Topic (?) about child private referrals and the same thing has come up there as I would suggest - depending on what you need your dx for, think carefully about where you get it from. If it is just for self understanding and possibly accessing localised support groups, then a private dx is fine, but if you want to use it to push for other services, especially through your university, then I would urge you to get an NHS referral, no matter how much struggle it is (and yes, it is a struggle and I was lucky to have a fantastic tutor and supervisor who kept saying "oi, sort it" to the appropriate people when things went slowly) as this is 'recognised' and it's far harder for people to quibble with it (although they still try )

 

There are threads floating around on people's experiences with mental health teams (including mine) - I can't search for them now as I'm supposed to be working, but try a search for them - I know Bid and I are female but our experiences may help you comprehend what happens next week - you may be lucky, it may be fantastic, but it's always useful to go in pre-warned. I didn't and had the most fantastic meltdown afterwards - through actually that was a major turning point that made my uni go "ooh, we do need to do something here".

 

I hope it goes well for you and that you find the answers you need to understand yourself.

[peaches]

If you phone the NAS helpline and speak to an advisor, they will give you the names, addresses and telephone numbers of diagnosticians in your area from the directory. They can look at private and NHS separately if you want. This is how I found our route to diagnosis.

[ScienceGeek]

I decided to stick with the NHS in the end. I don't really have the money to spend at the moment and the appropriate people that need to know won't accept a private dx anyway.

[warrenpenalver]

why do people not accept private diagnosis?? surely the private doctors are still registered, qualified doctors!!??!! Why should thier opinion be less valuable! So your damned on nhs because they dont have funding in most areas to assess properly and damned on private because the NHS wont accept it to provide treatment!!!

 

I find this completely illogical!! So what are people supposed to do? stick with post code lottery and if it doesnt help you then tough have a lower quality of life....

[peaches]

I would be really interested to know specific instances where a private diagnosis from a qualified individual hasnt been accepted. If they are appropriately qualified I dont see the problem. Arent we easing the strain on the NHS if we go private?

[Karen A]

I would be really interested to know specific instances where a private diagnosis from a qualified individual hasnt been accepted. If they are appropriately qualified I dont see the problem. Arent we easing the strain on the NHS if we go private?

 

Hi Peaches.There have been quite a few cases on the Forum of private Dx not being recognised.However the cases I have noticed on the Forum have related to battles for appropriate provision for Education for children rather than regarding adults.Some LEAs will use whatever strategies they can to avoid the funding implications of providing support for SEN.These include debating which evidence for Statutary Assessment is acceptable.If the Dx does not come from within the LEAs own network then that is sometimes used as an excuse to not take it into account.

In the case of adults the NHS and Social Services are unlikely to question a private Dx for AS...because there is so little provision that a Dx does not have spending implications. Karen.

[warrenpenalver]

Karen that surely cant be legal?? Surely the LEA cant legally use source of Dx as an excuse unless its unreliable?? its the condition the individual is diagnosed with thats relevant.

 

 

Or is this a case of LEAs knowing that they can get away with it as most parents arent in a position to fight the LEA???

 

Shame nobody knows a friendly lawyer whod be prepared to take a case like it to court.

 

The whole thing quite frankly stinks and makes be angry.

Edited March 19, 2008 by warrenpenalver

[baddad]

It's a catch 22...

I know two people who have obtained private dx's for their children for ADHD after several local paediatricians and the ed psych had seen their children and said they saw no evidence...

One of the mothers boasted quite proudly to me that the 'Harley St specialist' she paid made his diagnosis 'within two minutes of her walking into the room'... Did he look at the Connor's assessments (which showed a marked difference between behaviour recorded by mum at home and his school profile)? Did he conduct any other sorts of tests? No... he had a chat with mum, took her cheque and made the dx.

Now I'm not saying her son hasn't got ADHD (I'm not qualified for starters), but under those sorts of circumstances you've got to see why the LEA might be suspicious... It'd be different if the local services hadn't seen the children concerned (and believe me, neither of these children were rejected 'out of hand' - I know they both had at least two/three consultations with the same paediatrician who dx'd my son, and the ed psych saw them on at least as many occassions) and the postcode lottery is something that needs to be taken into consideration... But...

The real crime is that even if these kinds of situations represent a tiny minority, when LEA's are faced with a local and known professional saying 'no' and an unknown quantity billing one half hour consultation and saying 'yes' it's fairly obvious which one they're going to accept. And if they can use those situations to make sweeping generalisations about the validity of private dx's generally, they will

 

BD

[warrenpenalver]

and yes you are right baddad, and majorities are written off by the bad reputation of a small minority.

 

What these stupid LEAs dont seem to get (and the whole of government) is that if they help the children at an early age properly they can make things so much easier for everyone and with much better chance of more independant living later on.

 

surely the money spent during 18 years of childhood is less than needing a full lifetime of support when its all gone wrong and the child didnt get the support they needed.

[Karen A]

and yes you are right baddad, and majorities are written off by the bad reputation of a small minority.

 

What these stupid LEAs dont seem to get (and the whole of government) is that if they help the children at an early age properly they can make things so much easier for everyone and with much better chance of more independant living later on.

 

surely the money spent during 18 years of childhood is less than needing a full lifetime of support when its all gone wrong and the child didnt get the support they needed.

 

I think one of the issues is that most of the children that get missed do not get a lifetime of support......they may go on to have mental health problems or fail to have a career as adults but it is not recognised that the difficulties that are experiencing in adulthood have anything to do with appropriate educational provision.

 

It apears to me that very few adults with AS get any support provided by Statutary Services at all and the resulting impact is hidden.

However I do think it is worth remembering that AS has only been a recognised Diagnosis for a relatively short time.I am in my 40s and many adults in my age group and older did not recieve support in school because there was not the awareness of SEN there is now.

Also I am aware that it may not feel like it.....but provision is actually better now than when I was at school.Karen.

[warrenpenalver]

fair point karen about sen provision. I left school in 1998 and there was nothing like it back then in my school. none of these "school counsellors" either, just if you were lucky enough to get a teacher who noticed somethings wrong you might get help at lunchtime or be able to stay in laboratory over lunch. My teacher used to teach me how to look after myself too because i was a bit clueless on everything non academic and a walking disaster with accidents

[ScienceGeek]

none of these "school counsellors" either

 

I left school in 2000 and I had a school counsellor from 1997 after a particularly violent outburst and being bullied. Not that it really did me much good.

[warrenpenalver]

my school might have been a bit behind the times then as i left in summer 1998. Wouldnt suprise me as the school was run by religous brothers and had only recently had a normal headmaster and been taking girls for last 2 years.

[warrenpenalver]

oooh that makes no sense................

 

 

meant last 2 years i was there so 1996-1998

[ScienceGeek]

OK. NHS really isn't working out that well. I'm still not any further on now than I was in January. The psych that should have referred me to the maudsley has been fobbing me off with excuses for months now. He keeps saying that he will phone me about seeing him again then doesn't bother. If I finally get him to do the referral it will take a month for the letter then the maudsley has a 10 month waiting list Am going to phone the NAS tomorrow to find out my options regarding going private. I can't really afford to but it is the only way that I'm going to be seen within a reasonable timeframe.

[Karen A]

OK. NHS really isn't working out that well. I'm still not any further on now than I was in January. The psych that should have referred me to the maudsley has been fobbing me off with excuses for months now. He keeps saying that he will phone me about seeing him again then doesn't bother. If I finally get him to do the referral it will take a month for the letter then the maudsley has a 10 month waiting list Am going to phone the NAS tomorrow to find out my options regarding going private. I can't really afford to but it is the only way that I'm going to be seen within a reasonable timeframe.

 

Hi.Whatever you decide to do about the private referal it would be worth still pushing for NHS assessment at the same time rather than giving up.If you do get offered an NHS appointment you could always cancell either the NHS or private appointment.

Ben has an appointment for the 3DI [ASD assessment] in September.We will have waited about 3 months and the referal was considered a priority.So a 10 month wait for adult assessment does not surprise me to be honest.Karen.

[ScienceGeek]

Hi.Whatever you decide to do about the private referal it would be worth still pushing for NHS assessment at the same time rather than giving up.If you do get offered an NHS appointment you could always cancell either the NHS or private appointment.

Ben has an appointment for the 3DI [ASD assessment] in September.We will have waited about 3 months and the referal was considered a priority.So a 10 month wait for adult assessment does not surprise me to be honest.Karen.

 

Its not just that I'm concerned about the 10 month wait on their end, it is the fact that I don't know when the psych here will bother getting his act together to do the referral in the first place. I've been waiting 9 months for him to do a simple referral, the constant fobbing off. I simply don't have the energy to keep chasing him up on the many phone numbers I have to ring for him. Plus the fact that there is nothing in place to help me cope until I can be seen, I'm really struggling to hold it together here Oh yeah and I'm not the only one locally in the same position being mucked about by this psychiatrist (I know of at least 4 at our local pub group).

 

Good luck for Ben for the 3DI by the way.

[Karen A]

Its not just that I'm concerned about the 10 month wait on their end, it is the fact that I don't know when the psych here will bother getting his act together to do the referral in the first place. I've been waiting 9 months for him to do a simple referral, the constant fobbing off. I simply don't have the energy to keep chasing him up on the many phone numbers I have to ring for him. Plus the fact that there is nothing in place to help me cope until I can be seen, I'm really struggling to hold it together here Oh yeah and I'm not the only one locally in the same position being mucked about by this psychiatrist (I know of at least 4 at our local pub group).

 

Good luck for Ben for the 3DI by the way.

 

It is probably a money issue.I know in our area people have to push hard to obtain agreement regarding whether the PCT or mental health trust will provide funding. Karen.