post-diagnostic support

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

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ALADDIN
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Joined: Tue Oct 06, 2009 2:33 pm

post-diagnostic support

Post by ALADDIN »

When receiving a diagnosis of dyspraxia,privately. I received a report, it is hard to understand because there are psychological terms.

I think it is too technical, a little hard to understand for someone who does not have a psychological background, and person who has ADHD or may have ADHD.

There should be post-diagnostic support.

I asked my GP for post-diagnostic support, my GP refused because I received a diagnosis privately.

I had to get a diagnosis privately, because the NHS in my area does not adults with dyspraxia.

I believe a "post code lottery" operates, with diagnoses.

People must obtain post-diagnostic support, otherwise life is much harder for you, you might have to get a diagnosis of another condition such as ADHD.

Xenavire
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Joined: Mon Sep 09, 2019 9:22 am

Re: post-diagnostic support

Post by Xenavire »

I'm not exactly sure if post-diagnosis support is going to be helpful. At least, not beyond a simple explanation of what it is that you do or do not have.

After all, unless you have something that requires medication, there is very little anyone can do for you that you haven't already figured out. I'm sure there are services that would be indispensable, like specialised driving lessons, but I wouldn't expect that as part of a support setup.

Now, if you need emotional support or mental health support, those are valid and should be offered. I'm not sure there is any reason that you should be denied either one.

If its simply about getting a grasp on Dyspraxia (or other conditions), there's not much to say. As an adult getting the news, you have already developed coping mechanisms that work for you, so most advice would probably be centered on common problems. For Dyspraxia, I'm not even sure we can give thorough enough advice, due to the way we are all affected in different ways. Vague tips of dealing with short term memory issues, handwriting and gross motor skills sound fine, but will likely confuse someone that experiences entirely different issues.

For lack of any better ideas at the moment, this forum is like a support group - at worst we are all in this, and at best we have useful anecdotes.

I wish I had something more encouraging to say, but sometimes the system just fails, and there doesn't seem like there is much motivation to make things better for us, at least not where it counts.

Tom fod
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Re: post-diagnostic support

Post by Tom fod »

Hi Aladdin

Have you been able to get any assistance from the people who provided you with your report? You may need to look at possibility of trying more generic mental health support services. It is very much a postcode lottery and the current crisis has set back the All Party Parliamentary Group that was due to hopefully discuss and explore ways to improve provision of support.

Believe you're UK-based. The Dyspraxia Foundation on their National Adult Support Group Facebook page were asking what Adults felt was needed. I did comment about post diagnostic support. If you're not on Facebook you can email their Adult Representative adultrepresentative@dyspraxiafoundation.org.uk.

You might also want to contact your MP and/or write to your local NHS Clinical Commissioning Group (CCG).

Out of interest, How and where did you receive your private diagnosis? Who from, and how much did it cost you?
(if you'd prefer to respond with this info in a private message, please feel free.
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.
(from Peter and the Test Tube Babies, Foot Full of Bullets)

ALADDIN
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Joined: Tue Oct 06, 2009 2:33 pm

Re: post-diagnostic support

Post by ALADDIN »

When Nancy Doyle, established her company Genius within, I had cheap assessment, with a trainee psychologist. I am not talking about money, but I will send you a message !!!

It was a one off deal in Oxford.

Nancy Doyle is on the BBC Programme, Employable me.

She is shown in the video.

https://www.facebook.com/bbcbreakfast/v ... 116182217/

I would thoroughly recommend Nancy Doyle for diagnosing dyspraxia/and or dyslexia.

I received my diagnosis of dyspraxia in May 2012. I did not have a focused mind. I now feel a psychologist or a mental health work would have been suitable for post-diagnostic support. The problem is that I received my diagnosis privately, my GP would not allow me to get post-diagnostic support. If I had proper support including an understanding of the terms of empathy and hyperactivity (it is not essential)., I would not be now seeking a diagnosis of ADHD.

I was told by a speech therapist in 2002, that I had dyspraxia. At the time I thought, dyspraxia was being clumsy.

I attended the now defunct DANDA (there is a pub group), run by the late Mary Colley in October 2008, I learned about adult dyspraxia and the different characteristics of dyspraxia.
It changed my life

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