Guidance for UK Assessment & Diagnosis through the NHS

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whirlingmind
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29 Mar 2013, 7:18 am

Information from the NAS about getting an assessment/diagnosis:

http://www.autism.org.uk/about-autism/a ... nosis.aspx (NAS also have a helpline)

Link to AQ10 (autism quotient screening questionnaire): http://docs.autismresearchcentre.com/tests/AQ10.pdf (complete and take to GP). Please note, your GP cannot fob you off with comments such as "there is no support for adults" or "we have no facility to assess locally" etc. You are entitled to an out of area assessment if there is no local clinic.

Quote:
Thank you for your correspondence of 2 August (2012) about Policy regarding out of area referral for autism (Asperger's Syndrome) patient's rights. I have been asked to reply.

Patients currently have the right to choose the organisation that provides their treatment when they are referred for their first outpatient appointment with a service led by consultants, and to information to support that choice. Any choice beyond this is at the discretion of the individual primary care trust (PCT).

You may be aware that the Government has made a number of commitments relating to extending the choice of treatment and provider in the vast majority of NHS-funded services. Views on implementing these commitments were collected in the subsequent public consultation Greater choice and control. The formal responses to the consultation are being published on the Department of Health website at www.dh.gov.uk and can be found by typing ‘Greater choice and control’ in the search bar.

The NHS Standard Contract states that providers must accept referrals for any patient who chooses that provider and whom it is within their clinical competence to treat.

I would suggest that patients contact the Patient Advice and Liaison Service (PALS) at their local PCT, which can be found through the NHS Choices website at www.nhs.uk. PALS will be able to contact and investigate this issue with the chosen provider.

I hope this reply is helpful.

Yours sincerely,

Jane Spencer
Ministerial Correspondence and Public Enquiries
Department of Health


NHS statement on referrals entitlement: http://www.nhs.uk/chq/Pages/1094.aspx?C ... goryID=153 and here: http://www.nhs.uk/NHSEngland/AboutNHSse ... rrals.aspx

NHS NICE guidelines here: http://www.nice.org.uk/CG142

Autism Strategy here:

https://www.gov.uk/government/uploads/s ... 10.pdf.pdf

If you need to complain to the NHS about their failures, here:

http://www.nhs.uk/choiceintheNHS/Rights ... aints.aspx

Anyone facing trouble getting their GP to listen, contact your local councillor here:

http://www.writetothem.com/

If you do not get sufficient help from them, go to your MP here:

http://www.theyworkforyou.com/

There is also the Lords but they have no duty to reply to members of the public:

http://www.writetothem.com/lords


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Wandering_Stranger
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29 Mar 2013, 7:35 am

Thanks for this. :) I have been fobbed off with "you don't need a diagnosis" (the screening was enough apparently) and "there's nowhere to send you".

I'm going to print this off and take it to my GP, if you don't mind.



whirlingmind
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29 Mar 2013, 7:37 am

Feel free. I have asked Hyperlexian to sticky this, as there is an increasing number of comments on the forum from people who have either been fobbed off, don't know how to get assessed, don't know what their rights are, or have had failed or misdiagnoses. I want something done about this, and the more educated people are the better. The NHS is a shambles. There have been a fortunate few who have been successful and the process straightforward, but more that have found otherwise.


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gratin
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29 Mar 2013, 8:11 am

I find it really difficult to ask for help and would normally say oh! OK then if my GP said I didn't need a diagnosis, but it's something important to me now with my daughter being diagnosed with at least having Asperger traits and needing to be assessed.

Will fill it in and give it a try with my GP ... I don't know how it's scored? Does anyone.

I often notice small sounds when others do
not - DEFINITELY AGREE
2 I usually concentrate more on the whole
picture, rather than the small details - DEFINITELY DISAGREE
3 I find it easy to do more than one thing at
once - DEFINITELY DISAGREE
4 If there is an interruption, I can switch back to
what I was doing very quickly - DEFINITELY DISAGREE
5 I find it easy to ‘read between the lines’ when
someone is talking to me - DEFINITELY DISAGREE
6 I know how to tell if someone listening to me
is getting bored - SLIGHTLY DISAGREE
7 When I’m reading a story I find it difficult to
work out the characters’ intentions - SLIGHTLY AGREE
8
I like to collect information about categories of
things (e.g. types of car, types of bird, types
of train, types of plant etc) - SLIGHTLY DISAGREE
9 I find it easy to work out what someone is
thinking or feeling just by looking at their face - DEFINITELY DISAGREE
10 I find it difficult to work out people’s intentions - DEFINITELY DISAGREE



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29 Mar 2013, 8:44 am

Thank you for posting more links, I will browse some of them.

I have to say in regards to the test questions I do find some of them a little difficult to answer as it can vary!

For example (using the questions linked):

I often notice small sounds when others do
not:

It depends on the sound and whether or not I am absorbed in what I am doing (in a state of flow) at the time. I may not notice the sound of the washing machine in the kitchen if I am sat in another room, but I will be bothered by the sound of a piece of electronic equipment buzzing as the latter really irritates me and makes it impossible to concentrate on anything else. It is the equivalent of hearing finger nails being repeatedly scraped across a chalk board! Yack.

2 I usually concentrate more on the whole
picture, rather than the small details:

This one I can answer, and the answer is no, or definitely disagree. Details are often very important and I do not like to miss them out.

3 I find it easy to do more than one thing at
once:

Again definitely disagree.

4 If there is an interruption, I can switch back to
what I was doing very quickly:

Definitely Disagree.

5 I find it easy to ‘read between the lines’ when
someone is talking to me:

It depends on the situation and the people involved. Strangers are harder to read than someone I know well as over time I get used to that persons mannerisms or ways of saying things and so on. Oftentimes I can tend to just take people at their word but I can use tone of voice to help me ascertain what they mean as well, so mostly tend to rely on that. Tone of voice is easier for me to read than body language.

6 I know how to tell if someone listening to me
is getting bored:

Depends again, usually on how well I know the person. Usually they tell me I am being boring so that clarifies things for me. They often tell me to shut up or to change the subject etc so that helps clarify things as well! By the point where they start yelling at me or telling me off I am pretty sure they are fed up and want me to be quiet etc.

7 When I’m reading a story I find it difficult to
work out the characters’ intentions:

Not sure as I don't usually read fiction so I cannot answer this one. I do watch movies but it is easier to read intention as you get a lot more information than you do in either the real world or a book (Ie lighting, soundtrack, camera angles which all give clues as to what is going on...I studied media studies and this was part of it). You can also read reviews etc and will often have done so before watching the movie. In real life creepy music will not start playing just because someone's intentions are not so nice!

As for reading I usually read text books or educational material. I have read some fiction but it is rare and a very long time ago, so I can't remember if I could work out intention at the time.

8
I like to collect information about categories of
things (e.g. types of car, types of bird, types
of train, types of plant etc):

This depends. I would like to start an index card system on species of shark, both modern and prehistoric so I can chart their evolution but I have not commenced this activity yet as I am presently reading about all things palaeolithic in relation to human evolution, diet and health issues.

In other ways I may collect things but may not collect information about them as such. For example I collect cross stitch and tapestry kits. I may collect them in general but will also collect different lines in particular such as the popcorn range and tatty ted. I always have collections related to my hobbies and am presently collecting books about human evolution, diet and the palaeolithic.

I also used to collect movies but I collect them in general also alongside collecting a few specific lines (ie Madonna movies as I was and still am a fan and Desperately Seeking Susan and Who's that Girl are two of my favourite films even if she can't really act). I also collect TV series (The incredible hulk, starsky and hutch, house) and documentaries particularly David Attenborough or those related to evolution and human evolution (at the moment).

Whilst I can collect things that are directly related to my hobbies (ie documentaries on human evolution etc) over time, if my hobbies change, my collections can expand and become more generalised.

I do not know if this counts.

9 I find it easy to work out what someone is
thinking or feeling just by looking at their face:

The varies and can depend on how well I know the person (see above). Also I can read basic human emotion such as fear, disgust, happiness and sad/upset but I may find more subtle emotions more difficult to read.

As to what people are thinking...that is beyond me. Sometimes I can take a lucky guess and get it right most of the time their thinking either confuses me or shocks me because I wasn't expecting the response I got from them etc.

I spend a lot of my life feeling like I am surprised or shocked by the way people think or their reactions to things I have said or done when what I said or did was meant quiet innocently. They do love to put intention into my words and actions that is not there. I have sort of given up on trying to figure out what people are 'thinking' as it generally gives me a headache and leaves me feeling confused.

10 I find it difficult to work out people’s intentions:

It varies again in regards to how well I know them, but on the whole I'd have to agree.

For example the neighbour asked me over for a chat the other day and admitted shortly after that it was more a case of wanting to spend time in bed with me (having sex). I had guessed this was his motivation as he has admitted to wanting to have sex with me before. However, prior to his admitting that, I was not sure what his intentions were when he used to chat, I thought he was just being friendly or chatty. I did wonder why he kept giving me a kiss on the cheek when he left though.

Aside from that example, in general, I live in a state of confusion when it comes to knowing what people want from me. I feel like I am expected to be psychic or something when I am not. Why on earth they can't just tell you things I don't know. Apparently I am supposed to just guess and when I do guess and get it wrong I get told off. They expect the impossible sometimes.


-------------

I have a feeling I might annoy the Dr with my picky answers as in my experience it usually does.

Also in general I tend to find that people insist I am misinterpreting them but I will insist they are misinterpreting me. IE A support worker once insisted that I misinterpret people but I feel it was the other way around.

On saying that it seems to happen to me so frequently I am starting to wonder if it is me misinterpreting them rather than the other way around, but I am not 100% sure about this. Humans often have the strangest ways of thinking so this makes it very difficult to communicate with people.

For various reasons socialising is like taking a walk in the twilight zone. Actually I think the twilight zone might be slightly less confusing. It was also a very good TV program.



whirlingmind
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29 Mar 2013, 10:17 am

bump.

Have PM'd Alex about getting this stickied.


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Cornflake
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29 Mar 2013, 10:32 am

Please don't bump threads - I can appreciate why you're doing it, but it's not an acceptable way of emulating a stickied thread.

Why not add a link to this thread in your signature?
That way it will be promoted every time you make a post anywhere on WP, and all members need do is click in your signature.


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whirlingmind
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29 Mar 2013, 12:14 pm

Why isn't it acceptable?

I don't think putting a link in my signature would bring it to peoples' attention. There have been a lot of posts from people in the UK needing this sort of information and advice. An example of this, is despite having my AS status and that of my children in my signature, I have been asked questions on threads such as whether I am diagnosed etc. People don't look much at signatures unless they have a specific reason to do so.

Isn't WP about helping people with suspected AS and diagnosed with AS?

If you have an alternative way to keep it somewhere highly visible (and searchable by search engines) I welcome hearing it.


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29 Mar 2013, 1:21 pm

whirlingmind wrote:
Why isn't it acceptable?
Because it is generally considered to be selfish and bad netiquette to keep artificially pushing a thread to the top of an index, which falsely implies an active and popular thread when in fact, no such activity or additional content is present.
Like I said, I do understand this is an important issue for you but that is still no justification for bumping. In essence, what you are doing is forcing a thread to behave like a sticky which means you are attempting to bypass the existing forum structure and impose your own.

Quote:
I don't think putting a link in my signature would bring it to peoples' attention. There have been a lot of posts from people in the UK needing this sort of information and advice.
No matter where you post or what you say, you will always include a link to this information. Another member has done the same thing for an Autism FAQ thread he created, also not stickied due to space considerations on the index page.

There have been several posts recently about this topic because there was no central repository here of information dealing with it - but now there is, and your advertising it in your signature is an ideal way of showing it exists and provides an immediate way of accessing it no matter where it sits on WP.

You might be aware that there is a stickied post in the wrongplanet.net discussion forum, concerning the closing of WP accounts - yet despite this, posts are regularly made to that very forum asking how to close accounts.
It would appear that stickies are easily missed, but having an additional pointer carried in each of your posts can only help avoid that while resolving any issue with the viability of creating a sticky.

Quote:
Isn't WP about helping people with suspected AS and diagnosed with AS?
Of course, but that certainly doesn't mean anything of potential interest or use must have a forum or sticky created for it. Space is limited at the top of the index page and in certain forums, a tight balance must be maintained with the number of stickies and the index entries: it wouldn't be good to have the number of topics shown on the index page reduced too much, especially in a very busy forum such as GAD, otherwise they run the risk of not being noticed at all.

As I believe has also been explained to you, this is an international website and issues with one aspect of one country's healthcare (adult diagnosis in the UK) is possibly too narrow in scope to warrant being made a sticky.
But, I see you've approached Alex and that's fine. In most other forums we have no problem with creating stickies or temporary stickies for members, provided there is popular support for the idea - but here in GAD, stickies are kept to a strict minimum and are created/removed only by Alex.

Quote:
If you have an alternative way to keep it somewhere highly visible (and searchable by search engines) I welcome hearing it.
All threads here (excluding those in Members Only) are examined by search engine robots. It is the degree to which they're accessed which keeps them "alive" on sites such as Google - not whether they're highly visible or stickied.
Incidentally, these searches would include your posts, and therefore the contents of your signature.


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whirlingmind
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29 Mar 2013, 2:08 pm

Huh? I cannot see anything selfish about putting vital information up that is to help people. Anyway what would be the problem with "implying an active and popular thread" (not that this has been in any way my intention)? Who would that affect and why? Arrgh! It's the end of the world. And I thought I was the one who had a tendency to catastrophise. :?

It has not only been recently, over months this crops up again and again, and don't forget there are constantly new members. Whenever such posts originated is besides the point anyway, the very fact that there are people wanting and needing the information is the point. I'm unaware of the closing of WP accounts sticky, but that is not relevant to this matter.

I cannot see how one important sticky is a problem with the space. There are 2 stickies in general that are not vital information, namely the NT/AS hotline one and the SBC open debate threads. (Also is it my imagination or has some sudden clean up gone on with the General stickies?). Also, signature links aren't going to help navigate new members to WP when searching for such advice, surely bringing new members is a positive.

No-one has mentioned the international-ness of WP, don't see why it matters. Aren't you in the UK Cornflake? Why does help for the British contingent on WP count as being too narrow? I'm sure there are a significant amount of us. And because we have an NHS which other countries don't, we have a unique set of problems and people need to know this information.

A link would be just that, a link. It would not be that list of information contained within the thread. So even if a search engine found it. how on earth would someone recognise what they were looking for. If it were me searching and it came up to some non-descript link I would quit it immediately.


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bumble
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29 Mar 2013, 2:18 pm

Is it possible to create a regional support forum where people can go to access links to resources available in their area or country? To which other members from that region can contribute. Then you could have support stickies from each region in there (so a sticky for the UK, a sticky for the USA yadda yadda) and free threads (non sticky) where people can discuss their support concerns individually.



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29 Mar 2013, 3:14 pm

There are people out there who claim that the US wants to be the most powerful and in control nation.

When you come up against this type of reaction on a US website, that information for UK (or any country of course) members is too narrowly focused just being present on the forum...well, you do begin to wonder.


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Jinks
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29 Mar 2013, 3:42 pm

I would also like to see regional forums where we can discuss issues specific to that country (there would be no space issue with stickying a thread like this there). I'm sure the members from the US and elsewhere are tired of wading through the many threads about the NHS which come up here - every time I visit there is at least one on the front page! Likewise, it's unhelpful to people from the UK, for example, to be offered advice on diagnosis by Americans and vice versa, so I think it would be immensely helpful to have a place to gather all of the threads about issues in a specific country.

I was actually really surprised when I first arrived at WC and it didn't have any country-specific forums, considering the number of forums it does have, and some about quite random things. I'm not complaining, I'm glad WC exists, but it does conspicuously lack any outreach toward users outside the US. And I'm not sure about other countries, but I've noticed there is a large population of Brits here, so that userbase is not a small minority at all. :)



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29 Mar 2013, 3:57 pm

Jinks wrote:
I was actually really surprised when I first arrived at WC


:lmao: :lmao: :lmao: :lmao: :lmao: :lmao: :lmao: :lmao: :lmao: :lmao: :lmao: :lmao: :lmao:


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29 Mar 2013, 5:03 pm

whirlingmind wrote:
Huh? I cannot see anything selfish about putting vital information up that is to help people.
You asked why it is not acceptable to bump posts and I have explained why.
This has nothing whatever to do with the content and everything to do with the act of bumping.

Quote:
Anyway what would be the problem with "implying an active and popular thread" (not that this has been in any way my intention)? Who would that affect and why? Arrgh! It's the end of the world. And I thought I was the one who had a tendency to catastrophise. :?
Because bumping a thread is only done when there is little to no activity and it slips off an index page, thus creating a false impression of activity when it is artificially made to reappear. It is simply not good practice; bad manners, if you will, and in general people become annoyed by a thread constantly being made to appear for no reason other than to announce it still exists.

Quote:
Whenever such posts originated is besides the point anyway, the very fact that there are people wanting and needing the information is the point.
Which you are addressing and I am attempting to show you an immediate and effective way of promoting that information, irrespective of whether the thread is stickied or not.

Quote:
I'm unaware of the closing of WP accounts sticky, but that is not relevant to this matter.
It is entirely relevant as an illustration of how even stickied threads are completely missed (that one is also the first item in the index), and I mentioned it as a means of backing my suggestion that you advertise this thread with every post you make to help avoid that.
What puzzles me is why you are arguing so strenuously against publicising it - what do you lose by doing so?

Quote:
I cannot see how one important sticky is a problem with the space.
I haven't said that it is.
What I have said that space used by stickies in a busy forum like GAD is an important consideration, which is why Alex prefers to retain exclusive control of the stickies there.

Quote:
Also, signature links aren't going to help navigate new members to WP when searching for such advice
New and existing members will see your posts and the promotion of the link in your signature, therefore no navigation is required at all. They simply click on it.
Any members searching for terms which happen to be present in your thread (NHS, "UK diagnosis" etc) will therefore locate it easily.

Quote:
A link would be just that, a link. It would not be that list of information contained within the thread.
And neither would a sticky until it is clicked because just like a link (actually, every forum index entry is just a link) - nothing is revealed until it is clicked.

Quote:
So even if a search engine found it. how on earth would someone recognise what they were looking for. If it were me searching and it came up to some non-descript link I would quit it immediately.
Because a search engine would follow the link.
This is standard practice, intended to stuff the search engine with as much information as can be gathered so not only would your link be publicised, so would its content.
It is exactly what is already done with the forum indexes here. Google and others know nothing about the site layout but they do know how to promote a link and then crawl through it, promoting its content.


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29 Mar 2013, 5:04 pm

While regional forums seem a good idea, popularity and forum clutter are still important considerations.

Forums will not be created unless there is a clear, demonstrable requirement for them - this is not just sensible housekeeping, intended to minimise forum clutter and avoiding having members wading through pages of forum listings; it is also demonstrated by the history of forum additions made to WP in the past. Alex has always been reluctant to add new forums without a clear and demonstrable need for them and in most cases, requests for increasingly more specific forums are already addressed by and large with the existing ones.

What never helps support the case for a new forum is little to no evidence of posts on the topic requested - one would expect a very busy thread or two to demonstrate that there is at least a fairly active posting rate for some topic, but this practically never happens. Instead, requests are made in isolation and without being backed by a visible, constant requirement or other obvious reason to exist, they're unlikely to ever be created.

When considering regional forums one must first define how regional. It's complex enough deciding which countries should have their own forum (and what about those who lose out - don't they have a say?) but in many cases that would still be too broad - so further country-specific sub-divisions would need to be considered and very rapidly, a rat's nest of largely unused forums would result.
Well, so what? Empty forums won't take up that much disk space - but attempting to navigate their index entries would likely be a nightmare spread over several pages and although it's an easy matter to airily say "Oh, so just modify the site software", the reality of attempting that is never as easy and is often extremely expensive.


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