Am I dyspraxic? Help with the NHS and diagnosis please!

Getting assessed for your dyspraxia, getting help, disability allowance etc.

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Wayward
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Am I dyspraxic? Help with the NHS and diagnosis please!

Post by Wayward »

Apologies in advance...this is a really long post :blush: :blush:
...and I am new to the forum so I suppose the first thing I'd better say is hello!
I'm not sure if I'm posting this in the wrong bit of the forum but here goes...

After several years of wondering if I might be dyspraxic, I went to a GP three weeks ago to discuss it. I fell over and hurt myself on my way there (not something I do all that often - I bang my head quite often and bruise my legs but this is the first time in a couple of years at least that I've actually fallen over. I turned up at the GP surgery with blood on my hands and pretty shaken up, struggling to speak or act normally, so I am wondering if I came across differently to usual), and I saw a locum doctor who I hadn't seen before, and he agreed that I probably am dyspraxic and sorted out a referral to the neurology department of the hospital.

I got my appointment through pretty quickly - it was meant to be next week - but yesterday I got a letter saying my appointment has been cancelled. So I went to the GP surgery today to ask the receptionist if they could shed any light on why it's been cancelled, and she pulled something up on the computer and said that they were saying something about the GP's letter not being clear and they didn't know what I would gain from seeing a neurologist. The receptionist said she'd arrange for a doctor to phone me tomorrow evening, but then later today I got a phonecall saying that a doctor had said I needed to see someone in person, and asked me to make an appointment.

I feel like I am going round in circles. I feel a lot of doubt over whether or not I really am dyspraxic, or if I am just trying to find excuses/explanations. I recently quit a job because of the difficulties I was having, and I am really feeling a lack of confidence that there will be any work I can do. I found a part-time cleaning job but even that is difficult for me because of the need to work at a certain pace and get things done to standards and in a time frame.

So...can anyone please advise me on what to say to the doctor when I see him next week (it will be a different doctor to the one that referred me originally) and what to expect at this stage?

Reasons why I thought I might be dyspraxic...
  • As a kid, I couldn't hold my pencil/pen properly, found it painful and difficult to write that way. I remember having a plastic molded thing on my pencil that was meant to teach me how to hold onto it properly - I'm 30 now and i still hold my pen a bit strangely - I'm not sure how to describe it but I sort of rest the pen between my thumb and index finger, support it with my first two fingers, with the bit near the nib resting on my middle finger - my writing is much neater this way than with a 'conventional' grip. My handwriting is ok but I find I sometimes forget to finish writing a word, especially if I'm in a hurry - don't know if that's normal though? (for example, writing down someone's name and address as they tell me it, I recently wrote Mr instead of Mrs) and sometimes I will get ahead of myself while I'm writing and miss out a number or word.

    Terrible at PE - difficulties throwing, catching, understanding the rules of games, keeping up with the other players. Struggle with riding a bike (I learnt how but couldn't get the hang of gears, or going uphill, and I would fall off quite a lot)

    Sensitive to noise, but difficulty with hearing what people are saying when there is background noise. I struggle to follow what people are saying if they aren't facing me, and I find myself getting quite stressed out when people are talking to me and turn their head away. I often find it hard to talk to people on the phone, particularly if I don't know them - I've always had a slight phobia of using the phone and will avoid it whenever possible, though I am better with it than I used to be.

    Struggled with learning to tie my shoelaces as a kid (they are still prone to coming undone now, but I avoid laced shoes and tend to just lace them up and then pull them off still laced up to save myself the bother!) At secondary school I had special laces for PE that were like a spiral you twisted together, to try to make it easier for me getting changed.
    (BUT I learned to tie my school tie quickly.)

    I tend to struggle to get changed quickly - it was a problem in PE at school and even now I still notice that I take longer than other people to get changed after I go to aqua aerobics (I have been trying to go to improve my fitness and lose some weight - I enjoy the classes because it's not so important to do the exercises the right way.)
    I struggle to follow exercise instructions though - I know my left from my right perfectly fine, but if I'm watching someone demonstrate an asymmetrical movement, I struggle to get my head around what to do with what limb!

    I am very forgetful - terrible short term memory (eg I forget what I've just been told sometimes, or will miss part of a list of instructions - I'm sure there have been times when I've even missed just the word 'don't' which I think sometimes which can cause problems!) Sometimes I forget events or information I've been given completely. But my long term memory can be very good. I get deja vu a lot and also episodes of something I think is called jamais vu, where I don't recognize things, places or people around me...(I'm not sure if that's a dyspraxia thing but since it relates to memory I thought I'd say it here)

    During my training in the job that I quit, I struggled to get my head around the rules and procedures. Using a touch screen computer posed difficulties for me because I'd accidentally press too hard and skip ahead on the menu. I also struggle in environments where there is a lot of things going on at once - background noise and activity can distract me easily...but I can also get really absorbed in doing a task and not notice things going on around me (is that weird?!) Also, I got interrupted while I was doing a task in the old job, and I just couldn't re-focus afterwards - my memory is a blank on what happened exactly, all I remember is feeling very confused about what it was I was doing and where I was up to, and feeling a bit strange, like I'd been switched off for a moment, and couldn't function, while I had a customer there waiting. (I have wondered in the past if I might be epileptic)

    I've been told that I can take ages to get to the point when I am explaining something and have trouble with being concise... (errrrm...)

    Difficulties with driving - my instructor told me to quit after about 20 hours worth of lessons, saying that he would never be able to teach me. Problems I had were knowing when to change gear, controlling the speed of the car, and making sense of junctions (twice I went up the wrong side of a dual carriageway because I couldn't figure out where the turning was) - I used to say I was 'road blind'! The instructor told me to quit after I'd been driving too fast down a country lane and panicked when a van came towards me and I'd swerved the car, almost crashing into a wall)

    I have good and bad days - I studied art at uni and would sometimes get a good grade for an image, and sometimes a terrible one. Some days I can draw fairly well, and some days not well at all and I get frustrated with how I seem to get worse at it the longer I work on it. I get tendonitis in my wrists (it started years ago in a supermarket job) and it seems to get worse when I am feeling stressed.

    My mum has also told me that as a kid I struggled with 'up' vs 'down', and that I couldn't skip across the room in ballet classes and the teacher thought I was much younger than I was (age 4) It took me longer than other children to learn to read - but then my reading age shot up - about age 10 or 11 I had a reading age of 14, and I think English was my best subject at school though I know I struggled to organize my essays. It's a lot easier being able to type and edit what I've written now!

    I have poor posture (though I think it might be better than it used to be) and I remember struggling to stay sitting upright on the school bus or in the car - had a tendency to gradually start sloping over to one side, if that makes sense?
If you read all of that...then thank you! I am hoping someone here can help me get closer to understanding why I am this way, and if it really is dyspraxia, and if so, if there is anything I can do to help it? I feel really held back in life, and it's so frustrating.
Bacon
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Re: Am I dyspraxic? Help with the NHS and diagnosis please!

Post by Bacon »

I have been trying to get my diagnosis for 8 months through my GP, I'm no closer now than I was the first day I went to get it done. If you want to get it down on paper I think you're going to have to get a private diagnosis.
Tom fod
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Re: Am I dyspraxic? Help with the NHS and diagnosis please!

Post by Tom fod »

Hi Wayward


Welcome to the forums (or fora). I agree on your choice of this board for your post. You would hardly be castigated for posting to an inappropriate one anyway.

Sorry to hear you're struggling with NHS. Sadly it seems to be a lottery as to who you see and what you get. I'm inclined to suspect neurology dept looked at referral decided we don't really do dyspraxia lets bounce this one. (Sorry I'm a terrible cynic).

For what its worth your experiences seem very similar to mine and I can well imagine turning up at Doctors in a bloodied state after falling over myself. I need to think about walking when I'm walking as if I start thinking about other stuff I'm liable to be limping home. I've been told I have dyspraxic tendencies (rather than Dyspraxia) but on a bad day I'm def Dyspraxic.

There seems not to be much assistance for people in adulthood. I sort of suspect education authorities do what they can to help people get the best education they can but after that you almost seem to be on your own unless you have serious problems enough to be picked up by social services.

Sorry if this sounds unnecessarily bleak. There is one thing we can be very good at and that's determination so do revisit your GP and ask him to do some more research and see if there is anywhere else you could be referred. You could also try your Employment Service Job Centre to see if their DEA is able to offer any useful advice/assistance.

Hope you find this helpful. It's jsut one opinion so do look at other posts and ask more questions on these boards.

I suspect there are many opinions about whether or not dyspraxia is a disability or a processing difference. Think it and related problems easily have potential to become a disability.

Anyway All the best and hope you find useful info and support here.

Tom
Tom
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With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
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Wayward
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Re: Am I dyspraxic? Help with the NHS and diagnosis please!

Post by Wayward »

Thanks for the replies guys! I guess with all things it's a bit of a lottery which doctor you see or get referred to. I've got another GP appointment next week which will hopefully shed some light on why the hospital cancelled my appointment - I reckon you're right, Tom, probably they didn't think it was their area. My instinctive reaction was to think that it meant I was just being a silly hypochondriac, but maybe it is worth investigating anyway...
joy
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Re: Am I dyspraxic? Help with the NHS and diagnosis please!

Post by joy »

Hi wayward you didnt say how old you are but I guess you have left full time education and once you have left there doesnt seem to be anywhere suitable for adults to be diagnosed. Other sites I have been on some people are in their sixties now and still complain of never being diagnosed there are many dyspraxics out there who some of who are aware and many that struggle all through their lives and may not be aware that they have Dyspraxia and who just struggle with life in general, yet I would hazzard a guess that there are far more people who have Dyspraxia than Dyslexia yet so much more help is out there for them and it can be so frustrating at times.
They now say that neurological testing which is needed for Diagnosing Dyspraxia is a dying art and is too time consuming by testing lots of reflexes, eye movement ,,perception and other things as well and doctors are too busy to spend a lot of time with patients with very little sucsess when you are told as again treatment again will be time consuming mainly consisting of exercises to improve balance and co-ordination and eye tracking.
You can get diagnostic tests fourteen pages of your neurological dysfunction and treatment and remedation but it will cost you as I think there are far to many of us out there we seem to get brushed under the carpet because it all comes down to cost.
Good look with your fight let us all know how you get on .
Wayward
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Re: Am I dyspraxic? Help with the NHS and diagnosis please!

Post by Wayward »

Hi guys, thanks for the replies.

Joy - I am 30.

I saw my GP today and his response was basically "well ok it might be that you're a bit clumsy, that's what dyspraxia is just a fancy term for being uncoordinated. Nothing we can do about it, other than you could try practising things more and try some sports" I felt overwhelmed and cried a little in front of him. Tried to explain about the related symptoms and how I couldn't cope in my last job because of it all. He has recommended that I try the disability advisor at the job centre, which I already have an appointment booked for later this month.

I am feeling really foolish now though, and not sure how to proceed. I tried to ask him if I should tell prospective employers about being maybe dyspraxic, but he said he couldn't really advise me on that, that that's the job centre's area.

Anyway, I thought I would update you on how it went.
joy
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Re: Am I dyspraxic? Help with the NHS and diagnosis please!

Post by joy »

Going for a interview for a job when required to fill forms in it usually asks you do you have any dissability. This form should be in convidence should you become a employer because some nasty people will hold that against you and probably make fun if they were to find out.
If there are any reasons for the company to sack you that might involve your dissability for instance maybe being told to do something and have to be reminded many times because of poor memory. or maybe not keeping up with the rest of the staff of maybe being too slow, If your employer knows and he chose to employ you then he should make allowances for you since he would be already be aware .If he still choose to sack you then you would have a claim of unfair dissmisal under your dissability rights act
So I think that would depend on whether you are comfortable with telling your next employee which is very much down to the individual.
joy
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Re: Am I dyspraxic? Help with the NHS and diagnosis please!

Post by joy »

My son was told not to mention his Dyspraxia when the job centre sent him for a interview for a job probably because he had just finished college and they dont want you to stay on job seekers, Although he had to fill forms in and his writing wasnt very good so he choose to tell the interviewer he had Dyspraxia he still got the job and has now been there six years. So its each to their own.
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