Looking for help with diagnosis and VERY discouraged

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

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BeatrixPlotter
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Looking for help with diagnosis and VERY discouraged

Post by BeatrixPlotter »

Hi guys, thanks for reading!

I signed up to the forums because I wanted your opinion on what I'm dealing with at the minute. After all, you'd be the most informed!

So I've had depression and rather bad anxiety for nearly as long as I can remember. My mother, a teacher, has long suspected that I have dyscalculia. Researching into it, I discovered dyspraxia and realised that a lot of the condition applies to myself.

I put off seeking help confirming or denying I have the condition for a couple of months, as I was afraid I was simply making the symptoms apply to myself. However, the more I thought about it, the more I felt it might be part of the reason behind my depression. I've grown up feeling awful about myself, being told I was stupid for not being able to pick certain skills up, so no wonder really right? If I can tackle the possible dyspraxia (if that's what it is), maybe I can get a better grip on the depression!

I went to my GP yesterday, finally, and quite frankly I think the service I received was atrocious. I'm terrified of going to the doctor's after an unfortunate run in with a GP as a teenager (short story, I attempted suicide at 18, and I was forced to go to the GP after I left hospital. He then berated me and called me a 'stupid girl' for it. Exemplar human being), so I wasn't very clear on what I wanted. I brought in a symptom list from the net, which I'd annotated with examples so I couldn't forget anything.

This doctor decided I was simply depressed again, so started suggesting medication and sending me back into CBT and possibly to a psychiatrist. I told her absolutely no way in hell, so she went and spoke to a senior doctor. She came back after ages, and asked me to come back later to speak to both her and the senior doctor.

So I left in a total state, as I'd been basically accused of attention seeking and that I needed of psychiatric help. I came back though, and when the senior doctor said 'So I hear you've been feeling low?' I had to contradict him. 'No, I've been misunderstood. I feel as if I could have dyspraxia and dyscalculia, and I was looking for a referral to someone who could help me.' That put a stop to it finally, but he said he didn't know any support in my area (South Birmingham), so he'd look into it and call me today. So far it's 4:30pm and nothing. DEEPLY unimpressed.

I feel really discouraged about the whole thing. I want to sort myself out because I'll be better at my job (which I love), and I want to be happy for once in my life! However, after this and reading about your difficulties on this forum, it just seems like I'm going to get nowhere. I'll tell you what, I wasn't feeling 'low' before I walked into that doctor's surgery, but I bloody am now.

So, is there any point in fighting with my doctors to get some help?
AlleyCat
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Re: Looking for help with diagnosis and VERY discouraged

Post by AlleyCat »

What awful doctors! This kind of thing makes me so annoyed, as some of us may well have got dyspraxia as a result of mistakes which were made by the medical profession. When my mum was pregnant with me, it's very likely that she had diabetes which doctors failed to diagnose, as she was diagnosed with it when she was pregnant with my younger sister (who doesn't have dyspraxia). It's a neurological condition which affects just about all aspects of our lives, so I feel strongly that the NHS ought to pay for diagnosis and support. If I were you, I would see if you could register with another practice- I don't know if you'll get a diagnosis on the NHS, but I would not be putting up with doctors who seem to want to rush into diagnosing you with a mental health condition, rather than taking your concerns about dyspraxia seriously. In order to be assessed, I had to go private. Unfortunately, it might cost you £500 for a private assessment, but it is worth having an official assessment if you want to get adjustments in the workplace or on a course. Having an official diagnosis could also be useful if you ever find yourself the victim of discrimination in the workplace because of things which are caused by your dyspraxia. If you have no luck getting a GP to refer you for assessment on the NHS (which would be more likely to be with a neurologist rather than a psychologist), you can find a psychologist in your area here:

http://www.bps.org.uk/bpslegacy/dcp

If you're on Facebook, there's actually a West Midlands support group on there (look for Dyspraxia Foundation- West Midlands Development). There's also a page for the Dyspraxia Foundation National Adult Support Group, which might be of use.
Tim G
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Re: Looking for help with diagnosis and VERY discouraged

Post by Tim G »

Thats really out of order of your GP for not taking you serosley but I think it really comes down to them not understading dyspraxicia (another matter in itself).

Unforanlty this happens quite a lot and where a formal digignosis will be usefull, allthough it will cost its going to be verry helpfull so i highly reccomend it.

I do think that the docters are right about your mental issues and I think you should accept there referial which will help - don't throw it back in there face beceuse of them being unclear and misunderstood about your dyspraxicia.
The real Mr Potato Head
BeatrixPlotter
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Re: Looking for help with diagnosis and VERY discouraged

Post by BeatrixPlotter »

I'm not throwing anything back in the GP's face. I've gone to them for help with mental issues before, and they've actually been very decent with it. However, I feel that if I have dyspraxia it could be the cause of some of my problems, and so addressing this will help me address them. Having explained this though, they didn't want to know about dyspraxia, they just wanted to send me off on another round of therapy/meds. Er, no thank you, not TILL I've at least been screened.

I'm going back to my GP tomorrow after about six or seven phone calls with different agencies who've all said, 'I don't know what that is, you need to ring this number instead.' I'm not holding out hope. After reading around, it seems to me that if you're not in education, the attitude is 'Well, it's not a problem now is it?' and there's not a chance in hell of getting a screening.

I'm going to stage a sit in at my GP till I get my referral, but only because of the principle of the thing. It should NOT take three appointments and all those phone calls to get one. It's a waste of their time and mine, this appointment could have gone to someone else who really needed it.

I'm not holding out hope anymore.
joy
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Re: Looking for help with diagnosis and VERY discouraged

Post by joy »

hI BEATRIX
iT IS PRETTY MUCH THE SAME ON EVERY SITE i GO ON ONCE YOU HAVE LEFT EDUCATION THEY DONT SEEM TO BE INTERESTED IN YOU GETTING A DIAGNOSIS THERE ARE EVEN SOME HEALTH CARE PROFESIONALS WHO DONT BELIEVE DYSPRAXIA EXISTS SO WHAT CHANCE DO WE HAVE. GOOD LUCK WITH THE VISIT TO YOUR DOCTOR LET US ALL KNOW HOW YOU GET ON.
ALADDIN
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Re: Looking for help with diagnosis and VERY discouraged

Post by ALADDIN »

Hi joy,

The N.H.S will not even diagnose children with dyspraxia in some primary care trusts. It is a postcode lottery. It is very hard but not impossible to get a diagnosis of dyspraxia on the N.H.S but it is dependednt on the area, where you live.

Other conditions such as dyslexia, aspergers/ASD/autism, AD(H)D are generally hard to diagnose on the N.H.S.

It is hard to a private psychologist, who diagnoses dyspraxia, it is not clearly mentioned.


The psychologist should be heap, knowledgeable, practical, friendly.

Dyspraxia is far behind other ND conditions, society must do more to accept, understand, diagnose and support dyspraxia.
BeatrixPlotter
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Re: Looking for help with diagnosis and VERY discouraged

Post by BeatrixPlotter »

FINALLY a tiny bit of progress.

Went for my third (!!!) appointment today, they said they were going to call the Single Point of Access people who apparently deal with this sort of thing, and ask where exactly they should send me. Awesome. I don't mind the doctors asking for help like this, because it'll help me at the end of the day.

However, I have to book ANOTHER appointment just to find out what happens! I'm back at work next week (I work at a local college/uni) and I was trying to sort this out now so I wouldn't have to miss any work! Not impressed.

Ugh. If I finally get a sodding referral, it'll be a miracle. Why couldn't this phone call been made in the first place and saved everyone's time?
nickye
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Re: Looking for help with diagnosis and VERY discouraged

Post by nickye »

I've been interested reading this because I've been suffering from depression and the more I read about dyspraxia the more I feel it applies to me. I really hope you get the help you need. My doctor was very nice, but she didn't really know what to do, she said she'd never had an adult come to her with this before, and the children seem to get help and support through school rather than doctors.

They did suggest I ring the local Talking Therapies - I think there are many round the country. I also contacted the local branch of The Dyspraxia Foundation, and the lady there was really helpful and has asked me to drop in to her open house event.

I know I don't definitely know that I have dyspraxia, but reading all these posts is like coming home. The trouble is some professionals seem to have very rigid ideas about dyspraxia/depression/anxiety - there's no hard and fast symptoms which you can measure 100% exactly. I think people are quite quick to make their minds up and some people have no idea how much you can struggle with everyday tasks that other people find easy.

Good luck to everybody.
Nicky
BeatrixPlotter
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Re: Looking for help with diagnosis and VERY discouraged

Post by BeatrixPlotter »

AHA! PROGRESS! Only took three doctors, one student doctor, four appointments and a million phone calls. Good Lord.

I went in today as asked, and saw a different doctor. He told me that in fact, there is NO suitable support in my area. Basically, if you're out of school you're out of luck. However, he will refer me to an occupational therapist! HURRAH! IT WAS ALL I WANTED!

Why did no one say before, 'Oh, there's no support?' For God's sake, they're GPs, they must know this? What an enormous waste of everybody's time.

At least I got what I wanted in the end.
nickye
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Re: Looking for help with diagnosis and VERY discouraged

Post by nickye »

Hi Beatrix, I'm so sorry to hear you feel so discouraged, and I think it's terribly how little is known about this, considering how many people are affected. I haven't actually got a diagnosis, but I would lay money on it being at the root of a lot of my problems. Luckily my GP was sympathetic, although she did say she'd never have an adult ask her about this before!

But I have had quite a bit of help already from the local branch of the Dyspraxia Foundation - if you look on their website you'll see local groups. I have found that I am improving things already by following some of the advice in their books. I am going to persevere with the GP but I'm a bit worried after reading some of the stories on here. But some people seem to have had some luck, so I'm fairly hopeful. The lady at the Dyspraxia Foundation told me that I should ask to see an occupational therapist, and they can diagnose you and can help with doing everyday tasks you might be struggling with.

Good luck with everything. I remember that when I first went to the GP with depression about 18 years ago I was told there was nothing I could do to help myself, but this is totally wrong. I think there is always something you can do (even if you can't cure the problem) it's just a matter of finding the right people to get you started.
And above all don't blame yourself! (I don't always take my own advice though!)
deb
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Re: Looking for help with diagnosis and VERY discouraged

Post by deb »

Hi , i am in the middle of getting a diagnosis concerning my daughter who is sixteen. she now has 25% extra time in exams , i thought it was dyslexia , but they came back with a visual perception issue. She holds her cutlery in the wrong hand , was always clumsy , had probs with shoelaces and catching balls! She can do mental maths but has issues when putting it on paper, finds handwriting hard etc. Excellent at sciences , she is artistic but will not show it !
My thought is if you are an adult , then i would enrol on a college course of some kind and the college will test you , this will be quicker than going through the doctor! My daughter has got better as she has got older , and the last two years i have given her a supplement of omega3 1000mg , and this has definately helped ten fold. I hope this has helped in some way. Good luck!
deb
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Re: Looking for help with diagnosis and VERY discouraged

Post by deb »

I know of two people so far , and if you do the college or uni course they will assess you for free , this is the quickest way to get a diagnosis , just apply for the course , and tell them your worries and issues you have. All is not lost !
AlleyCat
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Re: Looking for help with diagnosis and VERY discouraged

Post by AlleyCat »

Deb, your daughter seems quite similar to me when I was about that age! Unfortunately though I didn't get diagnosed until adulthood, when I was having problems on a PGCE course at university. Although Disability Services referred me to a psychologist to be assessed, I was told I had to pay for the assessment myself. I'm a bit surprised that you know of people who have had their university or college pay for the assessment- I just wish more universities and colleges would pay.
kira
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Re: Looking for help with diagnosis and VERY discouraged

Post by kira »

thankyou for advising the collage thing. i never thought about that. i'm still weighting for my 1st appointment with the gp. but it is good to have a backup.
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