private diagnosis UK

[MrFish]

Hi
I'm new here, and I wondered if you guys could help me. My girlfriend is an aspie. She absolutely is. There is no doubt in my mind or in hers.

She would like to get a diagnosis. Largely for her own peace of mind, but also because it perhaps could be useful to help her get some adaptions made at work. She doesn't want to go down the NHS route, partly because she doesn't want a diagnosis on her medical records, she wants to be able to control who knows about it.

Can anyone here recommend a good quality private diagnosis clinic or whatever in the UK. I have sufficient money to pay for it, I have a car to drive us wherever we need to go, and she really wants it.

Really grateful for any help. Thanks.

 

[Fantasia]

I am in the same boat, waiting for what seems like forever to get a diagnosis on the NHS. I have enquired about going private and the answer seems to be, there are too few professionals who diagnose adults, let alone women.

In the meantime, my anxiety is through the roof and I can't work in my present state. I stand to get no assistance without a diagnosis.

 

[Autistamatic]

A private diagnosis will still go on her medical notes. Medical notes are shared between NHS and private medical practitioners as a matter of routine. That being said, a diagnosis is the only way to be 100% sure and to get any kind of accomodations, benefits etc. Private diagnosis can be expensive (up to several thousand £s) but it's certainly much quicker. Get in touch with NAS or Autism UK for help finding a trustworthy and well versed diagnostician.

 

[Monachopia]

I went the private diagnosis route and went with "London Psychiatric Clinic", the records are not shared between the NHS and themselves as far as I am aware - nothing of this nature has been discussed with me or my doctor details asked for (to my recollection - but I could be wrong).

My previous private diagnosis with another psychiatrist at the Priory over 10 years ago also did not appear in any notes at the NHS.

And my diagnosis did NOT cost several thousand pounds - the diagnosis session with my partner cost roughly £320 and any follow up's are £180 per session - which I did not need many of. Every practice/doctor is different so please do some due diligence and research.

 

[Autistamatic]

That's a fantastic price. Some people have been charged thousands for assessment lasting weeks or months.
As to the medical records it started last year.

NHS to log private healthcare data to address gaps in care records

 

[Judge]

As to the medical records it started last year.

NHS to log private healthcare data to address gaps in care records

"Nowhere to run, nowhere to hide"

 

[MrFish]

Thanks for the replies folks.

Monachopia - would you go as far as to recommend either of the two places you mentioned? Were they good?
Autistamatic - The data belongs to the patient. It can't legally be shared without consent. Prices do vary among providers, less worried about that, more concerned with quality of service. Nas and Autism UK were pretty much unable to help.
Fantasia - My heart goes out to you. I hope you get your stuff sorted out soon. Stay strong.

Any other views welcomed. Thanks.

 

[Progster]

I had a private diagnosis in the UK, but in the North East of England, not London. To get an appointment, I needed a GP referral. It cost about 400 pounds for the assessment. I only needed one session, no follow up. A report was written up and a copy sent both to me and my GP. It is on my medical record, but neither the GP nor the consultant can share medical records or personal information without the consent of the patient.

 

[MrFish]

Progster - Would you recommend the clinic you used? Would you care to share the name of it?

 

[Autistamatic]

The data belongs to the patient. It can't legally be shared without consent.

Even if that were correct, are you willing (and able) to pay for private medicine every time something related to her autism arises? Mental health, gastric health, epilepsy, EDS and many more are linked to our autism. The most constructive thing you can do to be on her side is to learn as much as you can about autism and the nonsense people believe about it, and be prepared to be her strongest and most vocal advocate. That will help her in a manner private diagnosis cannot.
I appreciate and applaud what you are trying to achieve, but I won't sugar coat the reality.

 

[Otenba]

If we're referring to data protection laws in place regarding data sharing in UK (and EU in general)... GDPR only applies to public sector just so y'all know. Not aware of a private sector equivalent, so maybe down to affected person to complain as less protection in place.

 

[MrFish]

Even if that were correct,

Well, it is. It's called the Data Protection Act 1988. Read about it if you like. Or not.

are you willing (and able) to pay for private medicine every time something related to her autism arises? Mental health, gastric health, epilepsy, EDS and many more are linked to our autism.

I didn't say anything like that, in fact what I did say was: "she wants to be able to control who knows about it". She wants to be in control of her own situation. She doesn't need me, (or you), to bail her out of anything, or buy her a life or be her saviour. She just wants to have some control of her life and part of that is her controlling her own information. In doing that she feels herself better able to run her own life in the way she sees fit. Just like everyone else does.

Perhaps you might want to view the self determination of an aspie, or anyone really, with a tiny bit less cynicsim. Or not.

The most constructive thing you can do to be on her side is to learn as much as you can about autism and the nonsense people believe about it, and be prepared to be her strongest and most vocal advocate. That will help her in a manner private diagnosis cannot.

It is reassuring to know that the ND community is so very similar to the NT one. Here, just like there there will always be those who, without the need to even meet someone, will know best how they should run their lives.

Thanks for that input, but over the twenty years that we have been together we have figured out what we both need from each other and how best to look out for each other. We did that all by ourselves!

I can't remember a time when there hasn't been someone telling us that we can't do this or that or we won't achieve the other, but we seem tho have done okay, by just ignoring folk who wanted to push us off what we knew to be right for us.

People who try to pour cold water on us, people who want us to follow their one true way, naysayers and pessimists in general ... well .... you've just got to ignore them really. Haven't you?

I appreciate and applaud what you are trying to achieve, but I won't sugar coat the reality.

No, I quite understand. I'm exactly the same way.

 

[Autistamatic]

I'm very disappointed in such a judgemental and negative response. I, along with many others, have personal experience of medical information being shared between private & NHS doctors without permission. The DPA facilitates prosecution of offences if they can be proved, but it does not prevent violations, mistakes or "off the record" conversations between professionals. Most private practitioners also work for the NHS, as I'm sure you are aware. If violations should occur then you as the victim are obliged to pursue it yourself. The Equality Act is much the same, and if you weren't aware of how badly that is abused and ignored, I doubt you would be so keen to keep the potential diagnosis out of sight.

Your response has a strong flavour of "I know better than you" which is something we in the ND community are very much used to on a daily basis. The phrase "Nothing about us without us" did not come about by chance. Please don't make the mistake of discounting other's lived experience in favour of your own preconceptions. Please don't be so dismissive as to cast a suggestion that comes from a place of genuine care and concern as an instruction.