NHS diagnosis (non)progress - neuro specialists Yorkshire?

[babooshka2002]

Well, the ongoing problem with getting an assessment for dyspraxia continues.

There are three permanent doctors at the GP practice I go to, plus many temporary ones. Almost everyone I spoke to simply said, "We don't normally diagnose adults". This is obviously maddening.

Early this year (I think), one of the temporary doctors seemed to be weakening a bit. I'd seen her quite a lot, and every time I would ask, and really try to make it clear just how much it hijacks my life, and how much I struggle with simple things that other people seem to be able to do. Eventually she gave in when I almost broke down in front of her. She wasn't a very experienced doctor and pretty young, maybe that's why she made the mistake she did. She referred me to a Learning Disabilities Psychiatrist. I was ecstatic. I thought I might get some answers. It was not to be. The appointment I had with this guy was devastating - he didn't give assessments for specific learning difficulties like dyspraxia and dyslexia. His function was solely to assess people who were mentally retarded, those with very low IQs. He didn't bother to do anything, as he told me that since I clearly had no problem with intelligence, any test he would have done would be just silly, and patronising to me.

Recently I've run into the second sympathetic doctor I've seen. He's a permanent partner at the practice, so why I didn't go through him in my previous pestering efforts, I'm not sure. Anyway, I managed to express myself very well with him I thought, and tried to make him see what the benefits of a diagnosis would be - I told him that ironically I thought it would make me more employable, as employers would then be able to point at me as an example of how terribly diverse and open they are. *rolls eyes* I also said it would help if I decided to go into education again - I pointed out that getting an assessment through a university or college takes time. I could be halfway through a term by the time I got any help, which just isn't good enough - by then I could be screwed. I also pointed out that several people have now told me independently of each other than I should be claiming DLA. DLA has to be claimed on the basis of a recognised medical condition. I had help when I was a child with my pen grip, buttons, using a knife and fork etc, but the reports from the occupational therapist are far too old to be helpful any more, especially considering that some people appear to think that all the symptoms of dyspraxia magically disappear when you become an adult. Not good enough. I told him "You try sitting before an Appeal Tribunal and telling them you have a vague problem in your brain that causes all sorts of havoc that can't be measured and you have no name for and they can't see any sign of... well. They'll just be laughing at you inside". The Appeals Tribunal for my failed DLA claim asked me why I could turn the pages of my submission form but I couldn't chop vegetables. How do you answer a question like that, especially if you're not good at thinking quickly?

So anyway, I made my case to him. He responds in a different way to the other doctors. The others say no. He says, let's look into this. He happens to work at the local PCT as well as the surgery, so he says he is looking around for people who know stuff about dyspraxia, because it is still a very specialist area.

So. That's where it stood, further to this I've been talking with a friend of mine. Her parents are an occupational therapist and a clinical psychologist, both retired. My friend had a chat with them about me, and the advice from them that's come out of it is NOT to see a clinical psychologist, or any form of psychologist. They say I should see a neurologist at a specialist neurological centre, and have a neuro assessment before anything else. She said I could refer myself there, which I'm not convinced by but I'm certainly up for trying it, though I will ask the sympathetic GP first. I'm in York.... I don't know where my nearest neurological centre would be. Leeds probably - anybody know how I would search for that on Google?

My friend says her parents said that psychologists aren't really able to give me what I need. It's interesting. I've been obsessed with the clinical psychology thing, but now it appears maybe that is barking up the wrong tree. My friend suggested that they would need to rule out brain damage and things like cerebral palsy. Her parents asked her if I'd ever had a brain injury or had hit my head. Hit my head all the time as a child from falling into things. but the delayed reaching of milestones and the dreadful balance and co-ordination came first.

[Daniel]

Let me just say that I feel you pain on getting a diagnosis. I tried this a few years back. I went to my GP who had never encountered anyone asking about Dyspraxia and referred me to a neuro-psychologist at a local hospital who, similar to your experiences, proved to be set back rather than progression. He only did a few reaction tests, put it down to him thinking I was a nervous type and that I needed to discover my 'own type of normality' or something similar. This clearly isn't the way to diagnose dyspraxia and I suspect the GP's inexperience meant that I was referred to a 'best guess' at a consultant who might be able to help. Alas they weren't and they didn't.

Following that I gave up bothering trying to get diagnosed. I have more than enough evidence to know I'm dyspraxic and am fortunate in that I've been able to get a decent job. However I do suspect the day will come in the not too distant future when I am going to reach a level when I'll struggle to manage the workload. I'm hoping that my work (which is fortunately the public sector) will give me support without having to show evidence of a diagnosis, however we'll have to see.

Diagnosis of dyspraxia remains to be a massive hurdle for adults and I do hope we can make some progress on finding a route to a solution. Let us know how you get on.

[Pooky]

I have a pretty similar story to Daniel. GP wasn't interested - told me if I wanted a diagnosis to go private.

I tried going through the University and they sent me to someone for dyslexia even though I said dyspraxia. So that really didn't go anywhere either.

Like Daniel I am pretty god job.

Having set up this site it has enabled me to see that I am not alone in my frustrations of pavements and tables jumping out at me, along with many other things. A diagnosis would be nice - but it isn't going to change the way I lead my life.

Keep us informed how you get on.

[Liz944]

Even when you have a diagnosis as an adult the only time you find you get help is in higher education.... Elsewhere help is pretty non-existent..... So the diagnosis will probably ony confirm what you already know.... (Sorry for the negative view on things - having a bad day.... )

[babooshka2002]

If my problems were 'only' physical I would be able to handle it and it wouldn't be such an issue. As it is, I struggle to follow instructions, live in an enormous heap of chaos, and seem to be incapable of sorting anything out or organising anything, and have been this way for as long as I can remember.

I also have a problem with words - not reading, I adore reading and can be trapped in a book for hours. Words. I say the wrong word, and the word I say by mistake doesn't even have to be similar to the one I should have said, nor do I have to be thinking consciously of the stray word - it seems to jump in all on its own. I do the same thing with typing, although with typing it seems to be more likely that the words I muddle are similar. Like I often type 'something' instead of 'sometime', or muddle up the -ed and -ing forms of a verb - not because I don't know what to use when, but because my fingers just do their own thing. It's crazy.

EG: To my brother's friend who's just rubbed her face in my furry scarf: "Did you just wipe your nose on my towel?" (meaning scarf)
EG: To my mum: "Hey, do you think you could turn the volume down a bit?" (meaning heating)

Many other examples, just can't think of them right now. If I'm around people, I do it a lot. Looking at those two examples, although the word I said by mistake wasn't similar to the word I should have said in terms of sound or spelling, it appears it may be a case of words that are similar in concept getting confused. Hmmm. (I speculate a lot. I have to, since I have no diagnosis *gets angry again*)

Oh yeh, and if I muddle my words, whether its typing, speaking or handwriting, I don't necessarily know I've done it, because when I read something back and I've typed the wrong word, I will not see that wrong word. I will see the right word, because I know what I should have typed, so the correct word is in my head and that seems to be what gets processed regardless of whether it's actually there or not. And typing the wrong word isn't something that'll be picked up by a spell-checker, since I spell the incorrect word correctly. I don't always fail to notice, couldn't tell you how much I do that. In speech, I seem to notice most of the time because I know when something sounds wrong. Not always though, cos people tell me I've said wrong things and I didn't realise.

I'm also physically disabled - not in a wheelchair but I do have a stick and I suffer a lot of pain in my joints. So I couldn't do something physical, a labour job or something. I have issues with handwriting, unsurprisingly, and that suffers from the same 'rogue word' problem as my speech and typing, plus it's slow and untidy. I struggle to deal with more than one thing at a time so I could not work in a call centre - aside from my speech and stuff, listening to someone on the phone and having to pay attention to that at the same time as clicking through a computer system, or writing stuff down - don't think I could.

I'm so frustrated. What do I DO? What can I do? Can't work in a shop, can't stand for long before of joint problems, could not operate a till well enough due to clumsiness and struggling to handle small change - I love animals so I thought of being some kind of veterinary assistant but I cannot bend down and pick up an animal and stand up again without falling over. Tried it at a friend's house and nearly crushed her bunny rabbit. I don't think it's possible to be a vet's assistant and have someone else pick up the animal - that's the assistant's job.

That's why I feel I need help, see. Cos it affects everything, and I don't see how I can function without help. A diagnosis isn't a cure and I know there isn't a cure, but it could be a pathway to help, like occupational therapy help. I just can't handle this, and I do not want to be on benefits forever, which I think I will be without help. (I claim benefits for my joint condition, I have to point out, not this. But I hope to improve my joints with physio and am having acupuncture - they will never be good enough for me to do manual labour and I'm too clumsy for that anyway, but I hope for them to end up good enough to do some kind of job. But I can't do ANY kind of job without help. I would just be fired.)

Eh, this was totally the wrong thread for all that. Oh well. When my emotions come out, they come out.

[Liz944]

Don't worry about it being in the wrong thread.... Its better to get things off your chest.... otherwise you end up grumpy with you nearest and dearest.... which is alway a bad thing.....