Back to square one? the fab NHS service

[Evasura]

Ok, this whole thing of the diagnosis is like a kind of joke:
So, I went for my diagnosis in February, to a place called "Dyslexia action". I wasn't going for a dyslexia diagnosis, but the person that I talked to said that they could also identify toher learning difficulties. When I got my written report it says that I have dylexia and clear signs of dyspraxia, which makes further investigation for dyspraxia justified. This means that I have actually not been diagnosed with dyspraxia. I decide then to go back tomy GP with the report that I have, the information that the NHS gives to get a diagnosis for dyspraxia and also a report of an assessment that I got done when I was in Y8 in school. It doesn't say anything about dyspraxia, as it was a sociometric test, but it says that I am completely isolated from the rest of the group, that I don't seem interested at all in socialising, that I don't underdstand social rules and that I lack sense of humour and easiness to communicate and mix properly with the rest of the group. In a scale of a 100 points in social skills I got 1 ! do these symptoms sound familiar of any ND? so I take all this to my GP to get a referral to find out if it is dyspraxia, or AS (as in the dyslexia report it deos say that I have superior verbal reasoning and above average non verbal reasoning) or whatever. I get top the GP and HE ASKS ME THE SAME STUPID QUESTIONS AS THE OTHER GP!!!! basically, why do I need a diagnosis if I have been so successful for 37 years! And he is going to write to a neurologist to see if they give me an appointment, but it may take very long time as it is a life long thing, non life threatening and without cure! SO I tell him that the NHS webiste advises to see one's GP if one suspects one may have dyspraxia or any autistic spectrum condition in order to get a referral for an OT, not a neurologist and he tells me that he doesn't read the NHS website!!!!! But he will write to the neurologist anyway and they may contact me. What does this mean!!!! I really don't want to spend other £500 on another diagnosis.
is it all a joke?

sorry for the rant. If someone has the pacience to read this, thanx so much

[agsiul]

Don't know what to say. I spent €400 on my diagnosis but dont' have anything else from it. It's of no use in work I found otu when I'd done it.

[Euphena]

Eva

Why haven't you seen an Educational psychologist for a definitive diagnosis, as I think your going in circles here.

[Evasura]

the guy who diagnosed me the dyslexia and wrote that further investigation for dyspraxia is justified, is an educational psychologist, but specialised in dyslexia and that's why he couldn't diagnose the dyspraxia (which he told me after I had paid for the £500). The NHS say that it should be an Occupational Therapist who diagnoses it, but the GP sends me to a neurologist. Of course I'm going in circles here!

[Osymandus]

Well the GP is wrong (unless they made who scale changes and forgot to tell people ) Psychologist with occupational or educational therapy training are the only ones to do the LEGAL diagnosis . OT's help with therapy and care.

Agsiul , if your in the UK the report does carry weight and your employers must help you under the DDA . Now what that resonable adjustment takes is something you both have to work out.

[Evasura]

@ Osymandus: I know he is wrong. You know a lot about this and I've read other posts from you about it. The NHS website advises the same as you say. That's why I told GP that the NHS website says it has to be an occupational therapist and that's when he replied that he doesn't read it and anyway he was referring me to a neurologist. What am I supposed to do? It's the second GP who does that. It seems to be a lottery if you get a proper referral or not. Shall I go around changing GPs and try all the surgeries in Southwark (my borough) until I find (if I find) a sympathetic GP who actually knows somethign about dyspraxia and how to diagnose it?

[Millie]

I am totally reading this thread, feeling your despair here. My referral WAS to an OT. However, this doctor had to check first with her colleagues how to go about it. She was fairly young, and did not seem to know a lot about it. A couple of days later, I get a call from the social work dept, saying they have sent me out a letter explaining it is not within their remit to diagnose. I could have told the doctor that!

. I read elsewhere on this forum that OTs can't diagnose legally either, it is only a psychologist who can do that part of confirmation, although you may see an OT also. In that case, I was referred to not only the wrong place, but also the wrong person. So I am in two minds where to go from here. Because private would cost a lot, and I am not even sure of the entitlements for adults WITH a diagnosis- at least ones who are no longer students, if you get any kind of work support or access to services that can help you improve certain skills.

[Evasura]

I totally agree and feeling the same.
But not sure how to improve on certain skills. An example: My friend always tells me: check you have all you stuff before you leave home or you leave your place. yesterday I had bought a new suitcase and I was carrying it with me when we get to a book shop. I stop to look at dictionaries, buy a dictionary and when we are in the lift, he tells me: "don't you care about your new suitcase anymore?". OMG, I had totally forgotten about it! I panicked because I could not remember at all where I had left it or when it was the last time that I had it with me (he found it very amusing. Finally he had to admit: "you can;t help it, can you?" He normally says that I have a selective memory). Luckily it was still next to the dictionaries. Now, how or where do I get help for these things? I can't count the amount of money that I spend every month replacing the stuff that I loose ALL the time!. Another example is when the other day I left home and I had left my keys hanging on the door. I cycled all my way to school (50 mins) and I didn't realised I didn't have my keys until I was going to lock my back. I had to come down all the way back home and then back to school (in a way I'm lucky, as the keys where still on the door and nobody had invited themselves in). Yes, it's not life threatening, but I spend so much time and money on fixing stupid mistakes. Where do you help for this? How can I stop interrupting people in conversations? How can I stop forgetting what someone has just told me (the other day my friend tested me, without me knowing it, and he told me that it had taken me 35 seconds to forget what we were talking about). how can I know what is not an appropriate conversation or comment before I see weird people's faces and then I know that i've said something wrong?! Again, not life threatening, but not very useful if I wasn't to go up in my career, is it? How can I stop having bruises all over my body? aaarrrrrggghhhhh!
sorry for the rant

[Osymandus]

I totally agree as well , speak to a few peopel on The Real Dyspraxia Facebook page (espiaclly Alex Cumber Gowing ). In some ways you can see the logic of their argument (your fine now what's the problem ) whoever with that logic no one would be treated for any autoimmune diseases or cancer as every process those cell's that a re fine until an issue occurs.

[Millie]

I am exactly the same. The amout of time I spend losing my phone, keys, bus ticket (because I don't drive), is a nightmare. Luckily I usually have these essentials somewhere on me, but I confess I often have to replace things- some of which may or may not be found later!

You can cope, you can deal with situations, but it never means it's easy by any stretch of the imagination. Having the relief of a diagnosis I think would put all achievements and efforts into a whole new light. I would not want to label myself, but know I had dyspraxia for my own confidence, and continue to improve skills and KNOW why they were struggles and that it was accounted for.

[Evasura]

ditto

[Euphena]

Eva

I think you should contact Tim Francis and show him your report, he can give you some advice, by email or by telephone, it's free. he's fantastic. He's also an educational psychologist with many years in adult dyspraxia/dyslexia.

[Evasura]

thanx. I'm happy 2 get advise while I don't hv 2 pay anymore.

[agsiul]

Too tired to read all the posts. I'm assuming someone else has said this alread but . I'd keep moving until I got a GP who was sympathic. I went to the same GP that my sister went to. She had to keep moving until she found a guy who would diagnose her for ME. He was very sympathic so she recommended him to me and I've heard very good reports from other people about how he takes care of his patients. I'd move if I were you.