Adult diagnosis in the UK

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The NHS doesn't like private diagnosis. Dxd ADD less than a year ago under private psychiatrist using DSM criteria. NHS generally uses ICD 10 which still recognises Aspergers and apparently is unlikely to remove it from ICD 11. I have to go back for re assessment of ADD under the NHS and I bet you any money that it will be the same psychiatrist as I know he works in NHS as well.

I think I will leave mentioning possible ASD until I see the psychiatrist or do you think I should write my GP a letter explaining my additional issues?

It's a bit tangential to the topic (sorry), but I have heard this from a few different people now, and I am curious about why the NHS apparently doesn't like private diagnoses. People are entitled to private treatment and aren't taking up their time and government funding, so surely it's a good thing? Not to mention there are many reasons people might choose to use private services, including how long the NHS process is and how difficult it can be to get access to someone with the right experience in some areas. In my case it's also because I find travel and unfamiliar places stressful and my private psychologist is happy to visit me at home. It sounds like a stubborn and elitist attitude to have, and one the NHS has no right to possess until it can say that it's able to offer a good level of support for autistic adults across the whole of the UK, which is far from currently the case!

As I said earlier, no one has ever told me my diagnosis is invalid and I was referred for treatment for depression on the strength of it, but it concerns me and once I get my new referral I'll certainly press for a confirmation of the original diagnosis under the ICD or an assessment for ASD under DSM 5 because my problems are serious enough for me to want to keep the diagnosis whatever happens.

I've also had various problems with depression and missed chances of diagnosis throughout my life, starting when I was about 10 or 11 and not doing well at school and my teachers saying I had learning difficulties, so my parents sent me to a private tutor who told my parents she thought I was autistic. I got taken to the GP who looked at me and saw I was talking and had no speech delay and so didn't think my parents had anything to worry about and said thought that the problems were due to family circumstances. Since then I had depression, but this was not identified - again the problems were put down to external factors such as school, etc.

Then, when I went to University I went through a period of undiagnosed depression again - I lost a lot of weight and was taken to the GP under the suspicion of having an eating disorder. The GP didn't think that was the case and agreed to refer me for psychotherapy. On the referral letter he simply put "She needs to find herself" I went to the therapy and the depression did lift, though he failed to see what the root cause of the problem was. Admittedly, at the time AS didn't exist as a formal diagnosis so I couldn't have been diagnosed anyway, but the fact remains that the therapist didn't identify or even suggest I be assessed for any problems, not even depression which must have been obvious... and the irony is that this person whose name I won't mention here is now a leading expert on AS in the UK, and from what I understand now runs a AS centre in another part of the country, and even at the time of my treatment had written a number of papers on AS.

Exactly... a NHS diagnosis can take a year or longer, depending on the area and there's a long waiting list, many people including children need the help and access to services a diagnosis can provide. Also those conducting the assessments are specialists in their field with a lot of experience and not having their opinions respected by other official bodies is a great discredit to them.

I completely agree. Its a waste of peoples money, getting the DX in the first place, then a waste of taxpayers money getting DXd again under the NHS.

I have checked with NAS and apparently, there are no hard rules regarding private DXs being accepted, however many GPS and other support services insist upon a DX from the NHS, but not all.
It is completely unacceptable that people with developmental conditions are discriminated against in this way.

My private psychiatrist was also an ASD specialist and works partly in his private practice and partly on the NHS. So in theory, many people who are dxd by him privately could have that torn up and spend a lengthy wait only to be DXd by him again in a different building under the NHS.

In order to get diagnosed with a developmental condition, it has to impair your daily life. With this in mind, I'm am certain that many people go for a diagnosis only when the symptoms have got to breaking point and their studies, employment, family life are at risk. In those cases people need a quick decision and then quick treatment.

Private insurers also discriminate, in that they will pay for a DX of a developmental disorder but not any further treatment and you only get 2 sessions. So if you get referred for an ASD assessment and you are not DXd but they think it may be ADHD or something, you will have to get that assessment under the NHS or pay out of your own pocket.

It really angers me as I was told that if meds were not working, it may mean I have something else. They were not working, but I could not afford to continue privately. I'm glad I didn't now but it should have all run smoothly.

After 18 years of going to my GP asking for a referral to a general psychiatrist to see what's wrong me and getting mugged off with Prozac, it was only when I had private insurance and a self diagnosis of ADHD that I was allowed to be referred. And guess what? According to my GP notes It was stated that I display signs of Bi Polar, and they gave me Prozac. Its dangerous.

It seems that as an adult, you only get taken seriously if you can self diagnose on the internet and demand to be referred for a certain condition or it gets to breaking point and you are sectioned. This is extremely irresponsible and is causing needless suffering.

Sorry, I just get very angry about this. I'm a strong person with a supportive family, but some others are not as lucky as me.

I have a private diagnosis in the UK. I have contacted the Department of Health asking for something in writing to state that the NHS either do or don't accept it. I have also contacted the head of the PCT to ask the same question in case they have individual authority to decide at that level.

I agree it's utterly ridiculous that they frequently don't accept private DXs. My own take on that, is that they think that if you've paid for it, the clinician might just be giving you a diagnosis because that is what you paid for/are looking for. They might also question the credentials and experience of private clinicians.

In my case, the clinician has over 35 years experience in both NHS (as a consultant) and private and very fortuitously I did not have to pay for my assessment (he needed an adult subject for a course he had done at the UKs top AS facility to hone his skills). So they can't infer that about my diagnosis, but they might still not accept it.

He was way more thorough than the NHS assessments I had a few years ago, which stopped short of a full diagnosis for ridiculous reasons. Supposedly being the local experts they were unaware of traits that were possible in autism.

I am very suspicious there is a lot of dodgy behaviour going on in the NHS because of them not wanting to spend money. If everyone came to them with private diagnoses which they accepted, they would have to offer (what paltry) NHS services there are to those people. I think they take the view that they will deter a significant number of people by telling them they will have to go through a stressful assessment process all over again. They are terrified that as the regulations stand, they will have to spend money they don't want to spend. They are in denial of the scale of the problem with all these undiagnosed and privately diagnosed adults out there. Either all that, or they are just incompetent and like to waste time and money in the long term whilst all these undiagnosed by the NHS people are using adult mental health resources (perhaps costing the NHS more money overall) because they aren't getting the right support.

Dunstans experience is ridiculous, that they know his clinician is an NHS one and they are still insisting on sending him back to the likely same person, wearing a different hat. It's so short-sighted.

Last edited by whirlingmind on 05 Feb 2013, 8:13 am, edited 2 times in total.

Any diagnosis based on behaviour as opposed to concrete physical symptoms is subjective, and while I think it might be true that a privately funded clinician is more likely to give a diagnosis than an overstretched and underfunded NHS one, the private clinician is paid in advanced for his or her time and not the diagnosis - it would be unprofessional to misdiagnose someone and counterproductive as it would ultimately reflect badly on his or her reputation. I'm not saying that it can't happen, but it shouldn't be the basis for discrimination against private diagnoses.

I completely agree with you. But the NHS are a world unto their own. It's only by people raising up their voices about things like this that action will happen.

I'm a 23 yr old female living in the south of England. I'd been under the community mental health team for 4 years for Depression with no mention of anything else. My own suspicions drove me to speak to the GP, who was skeptical but said that the first thing he'd do is refer me to community mental health, so ask my doctors there. I did, and that doc was even more skeptical, but I had gone with a list of what I thought made me aspie, so he agreed to refer me (amusing side note - when I mentioned the possibility to my community psychiatric nurse, she LITERALLY laughed at me... who's laughing now...). It took a few months, but I had an appointment with a diagnostic team last summer. It's deff worth asking for an NHS referral - meant we didn't have to pay, but more importantly it means the NHS trust the decision, so it's much easier to use as proof for benefits etc.

I was diagnosed in July last year. The thing that has upset me most is the complete lack of support. Community mental health have said they can't treat me because autism isn't in their remit, so I've been abandoned with no support. We did the leg work to find a private counsellor with experience, but the nearest suitable person is over 45 mins drive away (travel really stresses me out) and we have to apply for funding (can't afford it ourselves) which we're reliably informed is hard to get, and even if they agree, they normally only agree to fun 6 sessions (I'd only just be getting used to a new person in this time).

In addition to lack of emotional support, we've had no support from anyone else for improving my situation. I want to move out, but my unique needs aren't allowed for by the council. There are some charities that want to help, but they require you to be on the housing register AND to have an assessment by social services which means tons of meetings with new people who are likely to not help in the end anyway. I've been really disheartened since my diagnosis that although I know a lot more about myself, I've actually received less help and support because of it

http://publications.nice.org.uk/autism- ... ntred-care

http://publications.nice.org.uk/autism- ... ementation

http://publications.nice.org.uk/autism- ... 2/guidance (see 1.1.13)

Read the above NHS NICE guidelines for what you should be getting. Print off the relevant parts or quote it to someone higher up in your PCT/mental health department and start insisting on your rights.

So, the NHS doesn't like private diagnoses; but won't refer adults for a diagnosis. Logical. In some areas (like where I am there) there are no services for adults. CMHT screened me, gave me the impression they were actually diagnosing me and discharged me. It then took them 3 months to tell me that they can't diagnosis me and that I've been discharged. I've made a complaint and 5 months on, nothing's been done still.