Is a private diagnosis of AS acceptable?

[peaches]

Hello! Im new here and I would really like some advice! This week we saw our GP as we believe our daughter has Asperger's. Our GP agreed it was likely and referred us to a psychiatrist on the area team. Our daughter is 21 but we have always known she was different, we didnt make the connection until recently.

 

I have learnt that the route for diagnosis in my city is a tertiary service. That is, you go to your GP, your GP refers you to the Psychiatrist who covers your area of the city, then this Psychiatrist refers you to the Asperger's Service which is based in our city but is a national centre. I thought this was long winded, but I let my GP make the referral.

 

In the meantime, a senior lecturer in AS at the university offered to do the preliminary work for diagnosing my daughter and pass her on to a consultant privately at a much reduced rate. The time scale of this is less, Ive heard from another AS mother that the Lecturer is a very personable chap and he diagnosed her son. He comes to your home and its much less daunting. Great I thought.

 

Until today. I had tried to speak to the admin person at the AS service earlier in the week and left a message. She got back to me. I told her about the above. She said the lecturer concerned was not a clinician and couldnt make a diagnosis. I pointed out that he was passing us on to a clinician who was an NHS consultant who worked for her service and she said she didnt think that arrangement existed. She also said we would have to have a diagnosis on the NHS if we wanted to access support and services for our daughter. Is this true?

[Mumble]

I guess it depends what you and your daughter want the diagnosis for. I was diagnosed (at 27) on the NHS. It has not been a key to support and services because such things are very very scarce. What the diagnosis has given me is self-understanding, and although at present I am in need of some additional support, this self-understanding has been the most important aspect of my 'journey'. It is true that very few clinicians are able to give an actual ASD diagnosis, but people with understanding may be able to point you in the right direction. Working in AS/ASD at a university level does not qualify anyone to offer a diagnosis - that needs to come from a consultant psychologist/psychiatrist.

[baddad]

Hi Peaches -

 

The info you've been given is a bit 'wooley' but based on some truth...

Many LEA's now won't 'accept' private dx's, so from an educational/statementing POV then NHS/Local HA is better... At 21, though, that probably isn't the reason you're seeking dx for your daughter (?)

TBH getting a diagnosis as an adult is hugely problematic, and for many people the 'postcode lottery' leaves no other option but private dx... I don't know whether that has other implications (perhaps others here will know?), but I've not personally heard of any ...

Having said that, I should warn you that support services for adults on the spectrum are few and far between. Sorry .

 

One other thought - unless there is a specific reason to rush I would just wait for the NHS assessment. If you're in an area where you can get dx'd through the usual channels, doing so (especially if the local SS 'prefers' it) makes sense financially even if it does take a bit longer. If their are doubts about the authenticity of the dx from the lecturer (and he may be 'well up' on practical support theory without any medical qualifications whatsoever), you can take his 'preliminary' assessment on board as a point of reference until the actual dx appointnment comes through.

 

Hope that helps, and welcome to the forum

 

BD

[Karen A]

Hi Peaches.I am not an expert on adult Dx at all.However we did at one stage think that we might be refered to our regional specialist AS Assessment centre for an assessment for our son[age 9].Certainly with children and teenagers the regional centres have an awful lot of experience and knowledge...so a regional assesment would be worth waiting for.

I have a feeling that...if the city is the one on your personal info...then it may well be worth doing a web search.I think it may well be worth waiting.

Forum rules don't allow discusion about specific centres on the open Forum.However it would be fine to put up a post with your area and specialist ASD team and then ask people to pm if they have used that centre.Karen.

Edited March 17, 2008 by Karen A
word missed out

[peaches]

Thank you all.

 

Could you PM me if you have used the Sheffield Asperger's Syndrome Service based at St Georges Hospital Winter Street?

 

Also if anyone has come across the names Luke Beardon and Linda Buchan please PM me. (Hope this doesnt break your rules).

 

I havent any problems with our local Asperger's service ATM apart from the fact that its tertiary referrals only. What bothers me is my daughter seeing the team psychiatrist for our area. My experience of these is that they arent great and try to fob you off with antidepressants, and then more antidepressants.

[cmuir]

Hi

 

I personally think it is unethical for a lecturer (assuming this is someone who is not medically trained) to offer services on a private basis in exchange for financial gain. In addition, a 'diagnosis' from this lecturer would hold no clout whatsoever. These comments are in no way a personal criticism - I recall very vividly being desperate for answers and ultimately a 'label' for my son. I couldn't think about anything else - I felt life was an existence and not a life. I'd be inclined to cut out the middle man and phone the consultant's secretary directly if you have a contact name (or go back to your GP and ask about going privately) and ask about going private.

 

I'm unsure what the pros and cons are of having a private diagnosis for an adult, but the reason I didn't go down the private route for my 6 year old was that I'd heard repeatedly that eg schools/education depts, etc simply did not recognise a private diagnosis. It seemed I had no choice.

 

Best wishes.

 

Caroline.

[peaches]

The lecturer wouldnt be paid any money. I would just pay the consultant when I saw her, he would do the preliminary work which I presume are tests and pass them on to her for a decision.

 

I tried to get the secretary of the prof. but I was told that this administrator was the person I needed. She has very emphatic about it being a tertiary service, which receives referrals from all over the country despite it being in our city. She said a GP referral wasnt enough, we needed a psychiatrist's referral.

 

This is the place where we have to go for a diagnosis:

http://www.info.autism.org.uk/Pages/Servic...ar=367&rs=1

Schools arent an issue: our daughter is 21.

Edited March 17, 2008 by peaches

[Karen A]

Peaches I think that if your daughter has the chance of a referal to the tertiary service it is worth waiting for an appointment unless there is a very long waiting list.The main thing with the psychiatrist is to go to the appointment with a short clear list of points that you think are important regarding your reasons for wanting an Assessment for DD for AS.Be prepared and be assertive.There are threads on the Forum regarding the things that adults are usually asked about and the sort of information needed...If you need more info do ask.

Don't be afraid to ask how long the waiting list is..if it is going to be ages then you can review options again.Karen.

[LizK]

Only a psychiatrist or psychologist can make a diagnosis of AS. If you go privately you have to be clear that whoever is makign the diagnosis is reputable. IME some private health care professionals are excellent and experts in their fields whilst others are dire and working in the private sector for a reason. If you end up being diagnosed by the latter then the opinion may not be valued by other services you want to access

 

I'm not sure what you mean about the senior lecturer doing prelim work in diagnosing? Is it to simply perform some screening tests which will then be passed on to a consultant to make the diagnosis or are they actually involved in the decision making process (would ring alarm bell)?

 

I have heard one of the people you mentioned talk and was seriously impressed with the quality of the presentation and understanding of AS. I understand he has years and years of experience in this field and previously did consultancy work for the NAS.

 

Lx

[cmuir]

The lecturer wouldnt be paid any money. I would just pay the consultant when I saw her, he would do the preliminary work which I presume are tests and pass them on to her for a decision.

 

I tried to get the secretary of the prof. but I was told that this administrator was the person I needed. She has very emphatic about it being a tertiary service, which receives referrals from all over the country despite it being in our city. She said a GP referral wasnt enough, we needed a psychiatrist's referral.

 

This is the place where we have to go for a diagnosis:

http://www.info.autism.org.uk/Pages/Servic...ar=367&rs=1

Schools arent an issue: our daughter is 21.

 

 

Hi

 

I stand corrected about payment. Even so, unless the lecturer has had formal medical training, I would be concerned about how much clout their opinion/expertise/preliminary work would have with a specialist.

 

I realise your daughter is 21 and schools/etc aren't an issue, however in view of my experience with my much younger son, education dept/etc would not recognise/acknowledge a private diagnosis, I therefore wonder if an adult may encounter difficulties with organisations acknowledging a formal diagnosis.

 

C.

[Mumble]

I would definitely encourage pushing for an NHS dx, although I do understand the frustration and difficulties this causes for some people. One issue I have with people having to go private is that it further skews the already terrible statistics about how little provision there is for adult dx as it 'hides' a certain proportion of adults.

[ScienceGeek]

I would definitely encourage pushing for an NHS dx, although I do understand the frustration and difficulties this causes for some people. One issue I have with people having to go private is that it further skews the already terrible statistics about how little provision there is for adult dx as it 'hides' a certain proportion of adults.

 

Unfortunately this kind of thing skews the statistics for a lot of conditions. I know of trans people who wait so long to be seen that they have to make the choice between going private or getting so depressed while waiting for the NHS that they end up committing suicide.

[Mumble]

Unfortunately this kind of thing skews the statistics for a lot of conditions. I know of trans people who wait so long to be seen that they have to make the choice between going private or getting so depressed while waiting for the NHS that they end up committing suicide.

I understand that and I'm not judging anyone for having to go private. Everyone has different needs and no one can say this is the way things have to be done. I was seriously considering going private and looking at what I could give up so I could afford the consultation (books and eating - literally) before my NHS appointment was brought forward as urgent. It just angers me so much that the people most in need (and let's face it - they're going to be the ones with less financial resources and people willing to help them out) are denied help, and because of this the full extent of the need for diagnostic services (for whatever condition) isn't understood, perpetuating the issues.

[hassleabe]

Thank you all.

 

Could you PM me if you have used the Sheffield Asperger's Syndrome Service based at St Georges Hospital Winter Street?

 

Also if anyone has come across the names Luke Beardon and Linda Buchan please PM me. (Hope this doesnt break your rules).

 

I havent any problems with our local Asperger's service ATM apart from the fact that its tertiary referrals only. What bothers me is my daughter seeing the team psychiatrist for our area. My experience of these is that they arent great and try to fob you off with antidepressants, and then more antidepressants.

 

 

Hi Hassleabe -

I have edited your post in line with forum rules... It's always annoying when it's something positive, but without their consent we have to remove comments regarding professionals. I have passed on all of the info to peaches via PM, and i'm sure she'll find it reassuring and helpful.

 

BD

Edited March 18, 2008 by baddad

[peaches]

Thanks Hassleabe, Im pleased you have had positive experiences of the persons I mentioned and that their input was valuable. It was really reassuring.

 

I can't afford a full private diagnosis and for lots of reasons I dont want to wait months just for the NHS. Thank you all for your views and concerns. As I am a psychology graduate myself, and have studied at the institutions that both of these people work at, I understand that a psychology lecturer might be a Dr or a Prof but not have a clinical background. However the second named person HAS. I think my own knowledge of psychology ethics would prevent me involving my daughter in anything inappropriate. BUT I will let the NHS referral stand, go along to it and go to the Tertiary referral too. I wont turn the private offer down either. I dont see why we shouldnt have both.

[harmony]

Hello! Im new here and I would really like some advice! This week we saw our GP as we believe our daughter has Asperger's. Our GP agreed it was likely and referred us to a psychiatrist on the area team. Our daughter is 21 but we have always known she was different, we didnt make the connection until recently.

 

I have learnt that the route for diagnosis in my city is a tertiary service. That is, you go to your GP, your GP refers you to the Psychiatrist who covers your area of the city, then this Psychiatrist refers you to the Asperger's Service which is based in our city but is a national centre. I thought this was long winded, but I let my GP make the referral.

 

In the meantime, a senior lecturer in AS at the university offered to do the preliminary work for diagnosing my daughter and pass her on to a consultant privately at a much reduced rate. The time scale of this is less, Ive heard from another AS mother that the Lecturer is a very personable chap and he diagnosed her son. He comes to your home and its much less daunting. Great I thought.

 

Until today. I had tried to speak to the admin person at the AS service earlier in the week and left a message. She got back to me. I told her about the above. She said the lecturer concerned was not a clinician and couldnt make a diagnosis. I pointed out that he was passing us on to a clinician who was an NHS consultant who worked for her service and she said she didnt think that arrangement existed. She also said we would have to have a diagnosis on the NHS if we wanted to access support and services for our daughter. Is this true?

 

 

Hi I'm new too.

My daughter, age 12 was diagnosed a few weeks ago. I went to GP, with a long list of issues some of which she was aware of, due to previous visits. Her first word was "do you have private health insurance"?

Thankfully due to a new job my Husband does, (yippie) Within the week we had a Sat am appt with an apparently very good peadiatrician (actually he was very nice, and very well informed) We spent an hour with him, and he diagnosed AS and ADHD. He works for the NHS also, but my GP said we would have to wait 3-6 months to see him on that basis. We have been back to him twice since, and he actually said that I might find this site helpful, along with many other ideas, treatments and some good advice. This Dr has so much info on AS it seems such a tragedy that so many people have to wait so long to see him. I really hope that you manage to sort your issues out, I really think that once a firm diagnosis has been made you can begin to see the wood from the trees (ish)

 

Good Luck to you

 

Harmony

[peaches]

Thanks Harmony. I didnt know paediatricians could diagnose, but maybe certain ones can. I actually wish we had gone private years ago. We do have limited private cover through a health scheme which my husband pays for through work. It covers an initial consultation for a dependent child but as our daughter is 21 she is no longer a dependent child.

 

I am actually thinking of doing the same for my grandson.

[Imposter]

I finally got formally diagnosed at the Sheffield Aspergers Centre last week at the age of 26.

 

I had to do the whole through the GP, through local psychiatric services and onto the S.A.C. -

 

My mum phoned the Autism Society last year about diagnosis for adults and was advised that private assessments weren't worth it, as these usually aren't accepted by people like LEA, benefits (DLA etc...) .

 

I suppose it depends on how easy it is to get your GP to agree to a psych referral - then how easy/difficult it is to get a psych appointment.

 

It could be an idea when you go to your GP for you/your daughter to have a few pointers about what to say written down. You also might like to print out some info, or write down some websites for the GP. It's possible he/she may not know very much about Aspergers! (my sister-in-law is a GP and having read up, I think I know more about it then she does!!).

 

And persist at the GP.

 

Me and my mum tried about 2 - 2.5 years ago at the GP, but that was before we'd spoken to the Autism Society and we weren't as prepared and were rebuked.

 

We went again in October - fully prepared.

 

Got a referral to Psych services - saw them late December -

 

And were referred on to S.A.C. for last week's appointment.

 

 

So if you go prepared and your GP doesn't just rebuff you, you COULD (from my experience) - be diagnosed within 5 months of the first appointment.

 

But that all depends on waiting times, referrals etc...etc..

 

But yes, definitely do not go down the private route. It's just not worth it.

 

 

[harmony]

I finally got formally diagnosed at the Sheffield Aspergers Centre last week at the age of 26.

 

I had to do the whole through the GP, through local psychiatric services and onto the S.A.C. -

 

My mum phoned the Autism Society last year about diagnosis for adults and was advised that private assessments weren't worth it, as these usually aren't accepted by people like LEA, benefits (DLA etc...) .

 

I suppose it depends on how easy it is to get your GP to agree to a psych referral - then how easy/difficult it is to get a psych appointment.

 

It could be an idea when you go to your GP for you/your daughter to have a few pointers about what to say written down. You also might like to print out some info, or write down some websites for the GP. It's possible he/she may not know very much about Aspergers! (my sister-in-law is a GP and having read up, I think I know more about it then she does!!).

 

And persist at the GP.

 

Me and my mum tried about 2 - 2.5 years ago at the GP, but that was before we'd spoken to the Autism Society and we weren't as prepared and were rebuked.

 

We went again in October - fully prepared.

 

Got a referral to Psych services - saw them late December -

 

And were referred on to S.A.C. for last week's appointment.

 

 

So if you go prepared and your GP doesn't just rebuff you, you COULD (from my experience) - be diagnosed within 5 months of the first appointment.

 

But that all depends on waiting times, referrals etc...etc..

 

But yes, definitely do not go down the private route. It's just not worth it.

 

 

I do think it is worth going private if the person/people you are refered to as a private patient are exactly the same people you wait to see for 6 months on the NHS. This is the case where I live, not just for AS but for everything. The GP has one or two sets of consultants you can pay and see them now or wait and see them later. Our private DX has been accepted by School, and senco. So sometimes it is worth the money.

Harmony

[Mumble]

I do think it is worth going private if the person/people you are refered to as a private patient are exactly the same people you wait to see for 6 months on the NHS. This is the case where I live, not just for AS but for everything. The GP has one or two sets of consultants you can pay and see them now or wait and see them later. Our private DX has been accepted by School, and senco. So sometimes it is worth the money.

Harmony

That makes me really cross. I understand that you needed the dx and would do anything for your child and I'm not saying anything against your decision personally, but all such a system does is move those who can't afford to pay further down the waiting list (and possibly they fall through the net completely as there just aren't the resources available). Inevitably this results in a system whereby it is the middle-classes that can secure a diagnosis, with the potential for ASDs to become a middle-class 'excuse' rather than the pervasive developmental disorder they are that presents across the population. This has serious implications for everyone in terms of longterm support and acceptance. People should be seen on the basis of need, not on the basis of ability to pay. I thought we had a National Health System, free at the point of use?

[warrenpenalver]

mumble i think many NHS consultants also do private work as a secondary job. They will sacriface the number of hours (and hence pay) for nhs patients and take on private patients to make up the difference in time/pay. They earn more with private patients.

 

The consultants private work is not supposed to impinge on thier nhs contracted work but obviously if no private sector existed then current doctors would work more nhs contracts to earn money.

 

Unfortunately the NHS hasnt been free for many years with people having to go private to get best treatment including recent high profile cases of the "postcode" lottery and the war veteran who is allowed to go blind under NHS to save some money. We are well down the pecking order in that case. Its wrong but i cant see it getting any better in short term.

 

Even if middle class are the only people who can afford dx, surely that doesnt make it an "excuse"?? That implies that professionals would give a dx when there is no such actual condition to dx. Yes i can see by proportions only the most severely affected in lower classes would get the help but that wouldnt in my opinion, be little the status of the condition itself.

[harmony]

That makes me really cross. I understand that you needed the dx and would do anything for your child and I'm not saying anything against your decision personally, but all such a system does is move those who can't afford to pay further down the waiting list (and possibly they fall through the net completely as there just aren't the resources available). Inevitably this results in a system whereby it is the middle-classes that can secure a diagnosis, with the potential for ASDs to become a middle-class 'excuse' rather than the pervasive developmental disorder they are that presents across the population. This has serious implications for everyone in terms of longterm support and acceptance. People should be seen on the basis of need, not on the basis of ability to pay. I thought we had a National Health System, free at the point of use?

 

Mumble

I can absoloutly understand why you are cross with the dx situations in some areas. We are fortunate that due to my husbands (very dull long hours) job he gets private health care as a benefit. It makes it hard when the GP says either use the health insurance or wait for months, oh and by the way you will only see the same guy at the end of it. We really didn't take up NHS time, as this consultant sees his private patients on a Saturday. You are right everyone should be treated the same, but I guess that in seeing this consultant and paying for him, should in theory free up an NHS space during the week for someone without insurance. It is a difficult one I know. I have a friend in the states who thinks we are so lucky to have an NHS however dreadful, as she has had to pay out her own pocket every step of the way with her AS son. I have no idea what the answer here is, of course AS like any disorder is across the whole population, I know of people who have had cancer treatment privatly, and that was no middle class excuse! Probably all the while companies give out health care as a benefit, the NHS will see it as a positive way of saving money in which they can pay for a few more managers/admin staff/etc rather than use it at a clinical level.

Don't be cross with me only did it for dd

Harmony