Private or NHS?

[Katiebell]

Hi everyone

 

I have noticed that most people on this forum have already got a dx for their children and some of them are quite young. I was wondering how your dx was reached either by the NHS or did you have to give up on the system and get private advice?

 

Thanks Katiebell

[butterfingersbimbo]

nhs with us.....but but it was like getting blood out of a stone.....not cos el's problems are small, but because once the dx is official they have to give you support which costs money!!!!

[Lynden]

NHS for us too but we've been incredibly lucky and things went fairly smoothly for us and we get a good bit of help and haven't had to fight for much -yet!

 

Lynne x

[palgem]

hi

nhs here to not to much trouble for dx just hassle getting any other help, mainly due to lack of funding

[jlp]

NHS here too - went round in circles at first but once we were seen by the Child and Family Unit then we were really listened to and it took about 8 months for a diagnosis.

 

ETA G was diagnosed the month before his 5th birthday.

Edited November 25, 2006 by jlp

[Katiebell]

Hi,

 

Thanks for your replies.

 

What I am finding is everything is taking so frustratingly long. Now I have finally managed to have him refferred every little step forward to see the right person is taking between 4 - 6 months. Has this been the case for everyone who has a NHS dx?

 

T's problems were first really picked up when he started school and since then I have been going round in circles. We spent the first 2 years of school having his behaviour observed by a SEN teacher from the specialist teacher service which I thought was great, someone was doing something. Only to be told by her eventually that he was not her problem and she tried to suggest that I spent thousands of pounds on the DORE or Ddat programme.

 

Unfortunately I live in Leicestershire which has the lowest funded LEA in the country and ed psych time via school is just not available for anyone as far as I can see.

 

I'm beginning to think that my only option is to throw hard cash at the situation.

 

Katiebell

[oxgirl]

Hi everyone

 

I have noticed that most people on this forum have already got a dx for their children and some of them are quite young. I was wondering how your dx was reached either by the NHS or did you have to give up on the system and get private advice?

 

Thanks Katiebell

 

 

With us it was a mixture of both. We were referred to NHS psych, but the waiting list was so long and we felt so desperate that we couldn't wait so went to a private psych. He suggested possibility of ASD in a report, which was sent to the NHS psych and pushed the official dx along. They were still a bit iffy about confirming it formally, it was really only when he was in reception class and all hell broke loose that the local ASD expert visited and took one look and confirmed it.

 

~ Mel ~

[oxgirl]

I'm beginning to think that my only option is to throw hard cash at the situation.

 

Yep, that's how we felt.

 

~ Mel ~

[Katiebell]

Thanks Oxgirl, was the private ed psych only able to suggest ASD and not make a definite dx?

[CarerQuie]

Rh's diagnosis was on the NHS.xx

[oxgirl]

Thanks Oxgirl, was the private ed psych only able to suggest ASD and not make a definite dx?

 

 

He said in his report that there were indications of an emerging disorder, but I don't think he wanted to commit himself after just the one meeting, especially as our son was so young (not yet 4). He suggested a course of psychotherapy sessions with himself, but unfortunately our budget didn't stretch to that at the time.

 

~ Mel ~

[JenRose]

With M he was first seen for many months by a consultant clinical psych who told her AS within 5 mins

of meeting M.

However, she wouldnt/couldnt commit herself and we had to go through her superior.

Her superior spent 45 mins with M and said no to ASD, and said OCD,extreme anxiety,communication probs

but wouldnt dx AS.

 

So we got in touch with the NAS and they put us in touch with our psych that we have now, and he dx,d M after spending a couple of hours at our house, he also carried out IQ and other tests.

 

The first psych telephoned our private psych and told him she 100% agreed with his dx but that her hands were tied as her superior has the last say.

 

There seems to be a cosy arrangement with the LEA and the superior psych and we have now written a letter asking her to explain her dx to us as she has written to the LEA telling them that M does NOT have AS in her opinion.

[darky]

Both mine were dx by NHS. Once referred it was pretty smooth but time consuming. It took a year to get full dx for each of them.

 

Ive now got a third in the system, but it will take time. Im not hopeful of a dx for him, but he does have issues which im sure will be identified and delt with.

 

I hope things speed up for you, and you get answers soon.

[cmuir]

Hi

 

I got a DX for my son on NHS. It wasn't easy! However, one word of caution about going private (I did look into it!) is that in a lot of cases private diagnoses aren't 'recognised'.

 

Caroline.

[Katiebell]

I got a DX for my son on NHS. It wasn't easy! However, one word of caution about going private (I did look into it!) is that in a lot of cases private diagnoses aren't 'recognised'.

 

This is what happened when my daughter was diagnosed as severely dyslexic. Her primary school refused to believe her assessment they very arrogantly thought that they knew better. This is why I have posted this thread to find out if, or how successful a private dx can be.

 

Something that worries me about assessments is that if you approach a private psych, they are hopful that you would spend more money with them. On the other hand LEA's will do everything they can not to spend money on our children. I just feel that whichever direction I turn someone has a hidden agenda. Am I being paranoid?

[Nic m]

Hi Katiebell,

My Daughter was diagnosed privately because i had a real struggle with the school first school ed psych was accomodating but he retired before the proceaa really started but the new one listened to the school.private diagnosis has not been disputed at all although school are still digging their heels in. My daughter is extremely bright and blends in very well in class play time lunch time and anything unsupervised is when she has difficulties. Every other proffessional has accepted the diagnosis without dispute and i was quite unprepared for how each of them just nodded their heads and said yes thats right.Its amazing how the system works isnt it? Good luck

Nicola

[Flora]

NHS with us. Fairly straight forward and painless compared to what I've read on here. I didn't appreciate how straight forward things were at the time until I read some of the frustrating experiences on the forum.... from our GP referring to Bill being dx with AS and dyspraxia was only about 3 months. Ben took 6 months because he was less straight forward and needed extra assessment time.

 

Flora X

[JenRose]

This is what happened when my daughter was diagnosed as severely dyslexic. Her primary school refused to believe her assessment they very arrogantly thought that they knew better. This is why I have posted this thread to find out if, or how successful a private dx can be.

 

Something that worries me about assessments is that if you approach a private psych, they are hopful that you would spend more money with them. On the other hand LEA's will do everything they can not to spend money on our children. I just feel that whichever direction I turn someone has a hidden agenda. Am I being paranoid?

 

 

Hi katiebell,

The school and LEA will say they dont recognise a private dx which is what they did with us until we phoned both the NAS and IPSEA and they both told us that its illegal to say that and that they HAVE to accept a private dx, the paediatrician that asessed M for the statement came from the NHS/LEA.

 

When we told him that we had M dx,d privately but that the NHS didnt agree he took a copy of our private dx and included it in his report!!!!

 

This has got the back up of both the LEA and the NHS, i think that they hope by saying they wont accept a private dx and that will make you think its a waste of money that it will put you off but it didnt in our case.

[Canopus]

I was referred to both NHS and private doctors and psychologists and they found nothing wrong with me. This was during the 1980s and early 90s.

[brooke]

Hi Katie

I realised there was something not quite right about my son when he was 2 he was assessed at 3 and i was told nothing wrong i didnt really know though as he was my first child. When he got to school though they realised straight away he needed some help and with there help he was diagnosed NHS at 5. In a way although at first i was told he was fine i have not had to fight like so many on here so im gratful for that but my son was seen though the school

Brooke

[Bullet]

Ours was on the NHS.

[elun1]

ds diagnosed by NHS at first appointment - no wait at all: he is severe tho

Elun

[lisa]

Both of mine were private because the waiting times were so long. In both of their cases, concerns had already been made and they'd been assessed by the schools NHS SALT team who are actually very good on ASD in our area. With my eldest, SALT recommended I go private if I had health insurance and even recommended me to Dr Baird at Guys who then recommended another consultant who did private ASD work. BUPA paid for a full day assessment and he was diagnosed AS. We had no trouble with the LEA accepting the diagnosis and he had a statement within 6 months.

 

With my daughter, we waited to see what SALT said and when they confirmed that they had concerns that she too was showing signs of ASD we went ahead with a private assessment. The NHS SALT and NHS paediatrician then wrote us a report endorsing the private report as the LEA were questioning the diagnosis.

 

The schools Ed Psych had changed inbetween my kids being diagnosed and the second Ed Psych tried to pooh pooh the private report. The private paed we went to is highly respected and experienced in ASD and even had a waiting list. She doesn't need the money and definitely wouldn't be unscrupulous enough to diagnose ASD without sufficient evidence. It's quite a detailed assessment, ours were over 7 hours in total.

 

I understand what you're saying about going private and not being entirely sure the professional isn't just saying what you're paying them to say. That's why when my daughter was diagnosed dyslexia we went to the dyslexia centre in Euston. We wanted someone who really knew what they were talking about as to be honest when it was first suggested she had dyslexia by an Ed Psych I didn't really believe it and wanted to be sure.

 

Lisa

[UltraMum]

Private because the waiting times were too long (9 months plus just to start the process)

 

If you PM me i can recommend a very good (but expensive) EP based in Notts

[badonkadonk]

I got an adult diagnosis on the NHS but had to fight for it. At first I was fobbed off and told there was no one in the area who could do an adult diagnosis (though what the flippin difference is I'm still not sure) and that there was nothing they could do we're very sorry and all that rubbish. But we persisted and contacted local Autism charity who gave us a list of professionals in the nearby regions that could make the diagnosis. We picked one at random and asked the GP to refer us. They did so, reluctantly, and fortunately the doctor agreed to see me and over the course of a year (but this only amounted to 2 appointments) I was diagnosed. However I had to act as the information relay between the professional and my GP as apparently if you are not communicating to someone within your region you lose all ability to write a letter/send a fax

 

However, now, for everything else if it's something that needs a referral for we claim off the private insurance and get a private referral. The difference, in my experience, is amazing. Appointments within weeks and not months. Doctors who are willing to listen and make further referrals and are not afraid to book you in for tests and blood tests and whatever is needed because they are getting paid for it. Whereas it's the other way round on the NHS because you're costing them money. Put simply, I have been bandied around and referred to all sorts of people from gynos to psychatrists to neurologists to psychologists over the years trying to get someone to listen about a problem that I've always had with my hormones. Nobody ever bothered to listen and I was treated like the plague. After a suicide attempt I begged my parents to start using the private insurance and do something. This was a couple of months ago and since then I've been seen 4 times and in that time been assessed, had scans, got a positive diagnosis and have seen my first referral on the step towards getting treatment. I have my next one Thursday next week and already have my check-ups booked for February for the initial doctor and the first referral doctor. All this for about the same as what I pay for my car insurance a month. Brilliant. My mum was also referred and seen in less than a month regarding her health concern and my nan is receiving ongoing treatment through her insurance and gets treated quickly AND with respect. Something that a lot of pensioners cannot get.

 

So for a diagnosis see how it goes on the NHS, but if you're struggling to get a refferal or are having to see lots of different specialists as I know a lot of you have too I would consider paying privately or taking out private insurance. Even just for the intial appointments, you could always ask to be referred back to an NHS doctor for further treatment if required.

 

Emily

xxx

[MichelleW]

Although I had private medical insurance, I went through NHS to get J assessed when he was about 2 after the health visitor agreed with me about his autistic symptoms. He was first diagnosed at 3 with specific speech and language disorder and not ASD (quote "he can't possibly be autistic - I got eye contact with him" after a 15 minute assessment!). However he was lucky to get referred to a special pre-school, where the head teacher agreed with me that he was autistic. She referred him to a different NHS paed who diagnosed him as Aspergers when he was nearly 5 but he showed a lot of the classical autistic symptoms such as hand-flapping, and I thought he should have been diagnosed as High functioning Autistic. I also wanted a more accurate diagnosis as SS differentiate between Aspergers (no help available at all) and Autism (not sure what help - but possibly respite care). Out of the blue, I got an appointment this week with a new paed who has taken over. Thinking J was going to have another assessment, I took J along for what turned out to be a " I just wanted to meet you and introduce myself" chat. But I explained the situation with SS, and the new paed agreed that J was "moderate" autistic and not Asperegers, just from watching him with me for 15 minutes. So now I just have to contact SS to see what extra help I might be able to get now. J is now 6 and a half, so it has taken me about 5 years to get where I am now - with an accurate diagnosis. The new paed did say that it should not make any difference whether it is Aspergers or Autism - he should still get the same help - but it doesn't work like that around here!

[Katiebell]

Thanks to everyone for your replies, it has been really useful and quite interesting to see the different standards of care from the NHS.

 

I have now managed to get my GP to chase up my NHS appointments after supplying him with T's triage report that the clinic failed to send him. So I think I'll wait a little longer to see what he can do.

 

My main concerns about going private is that I was't expecting an EP to be SO expensive and what if T behaves the day they see him and his problems get missed. I know he fits many of the characteristics of autism but I feel like other people think I'm making it up. Sometimes I think they're right, I know they're not.

 

Katiebell

[stressedmumto2]

NHS but it has taken a long time and a referall to Guy's.

 

We still don't have a complete diagnosis of ASD as my son wouldn't co-operate so for now he's got a dx of social and emotional impairment of ASD however she does make further comment saying that had she been able to do assessment he would of been dx ASD. Trying to get him into the correct school and the right statement and the LEA are still not putting it correctly on statement (should I add missing the whole of it out!)

 

We have now had a private assessment by an ed physcologist who has diagnosed dyslexia too on top of his other problems (adhd/odd/asd).

 

I've always thought that people are paying for the assessment when they have it doen but, tbh, my opinion has now changed on it.

 

I think local paeds are being told to only dx serious as I know of many friend who are also being told he/she has traits but not enough to dx.

 

The thing is they spend an hr with the child and many of them arent trained in asd, whereas this ed physcologist spent nearly 6 hours with us and really worked with my son, although it has cost alot but at least now I am aware of my son's difficulties that the LA were saying he didn't have.

 

Wish I knew about being able to have it done on health insurance, might take some out now as I expect to one day maybe needing to have assessments done on my daughter too <'>

[UltraMum]

My main concerns about going private is that I was't expecting an EP to be SO expensive and what if T behaves the day they see him and his problems get missed. I know he fits many of the characteristics of autism but I feel like other people think I'm making it up. Sometimes I think they're right, I know they're not.

 

Katiebell

 

The EP we used spent from 8:30-1:30 at the school and then another 3 hours with us and then saw J at home as well - she got a very good idea of what he was like and also picked up on stuff that we had said to the school and they had pooh-poohed as we were only parents