Help - private assessment refused

[bely]

So after many years I decided to bite the bullet and contacted Dyspraxia UK to get a private assessment through one of their qualified OTs.

There was an email exchange where I was asked about my medical history and I decided to be honest telling them about a neurological problem I had in my early childhood which *might* be the root cause of my balance and coordination problems (but that's not established - indeed all involved doctors back then declared it was fully resolved). Details at the bottom in case it's relevant.

Today I had a phone call with the OT and she told me she can't assess me unless a neurologist formally states there is no link, because the guidelines (???) say that to diagnose dyspraxia there shouldn't be any known medical underlying cause.

So this means for the UK acquired dyspraxia is not dyspraxia?

Still, quoting from the NHS website,

https://www.nhs.uk/conditions/developme ... dyspraxia/

This term is generally preferred by healthcare professionals because dyspraxia can have several meanings.

For example, dyspraxia can be used to describe movement difficulties that happen later in life because of damage to the brain, such as from a stroke or head injury.

Does anyone on here got diagnosed with acquired dyspraxia? Is there any hope?



*what I wrote in the email*

I had a problem
> in my early childhood (2 yo) which prevented me from walking until
> it was surgically solved. I never crawled, I could stand but kept
> falling down. Failing the orthopaedic routes, I had a CT scan and
> they found an arachnoid cyst in the cerebellum that prevented the
> circulation of cerebrospinal fluid. At the age of 2 years and 8
> months, in 1984, I had a ventricular shunt surgery which solved it.
> I learnt to walk at 3 during physio rehab.
>
> Whilst this definitely delayed my motor skills acquisition, it
> doesn’t justify (in my opinion) my coordination problems still as
> an adult. Neurologist and paediatrician back then declared, after my
> physiotherapy ended, that I had fully recovered and that this
> wouldn't impact my future in any way and I would have been perfectly
> normal.
>
> When I was pregnant, the NHS didn't care at all about this history
> and refused me a C-section despite the original neurologist saying
> that the pushes of a natural birth could have been dangerous for the
> shunt which is still working.
>
> This to say that many medical professional believe this has no
> impact on who i am now.

[Tom fod]

Hi Bely

An OT is not a Neurologist so I can understand something of why they are not comfortable proceeding without a Neurologist's report. They have to cover themselves in the unlikely case that confirming a 'diagnosis of' dyspraxia resulted in more serious and sinister causes being missed or ignored, and the impact that might have for you and your family.

Have you paid Dyspraxia UK?

Diagnosis/confirmation regrettably doesn't open (m)any doors. However, for many professional confirmation is really important on a personal level (I'm not stupid/lazy/ careless/inept etc or making it all up.) There are other potential routes to getting assessment though your childhood medical history / Neurological intervention unfortunately may rear its head again.

It would be worth discussing what Dyspraxia UK have said with your GP to see if they can advise possible next steps/options.

[bely]

Hi Tom,
Thank you so much for your reply and for reading my essay


They have been good in that at least this phone call was for free.

I get your reasoning, but if there was something sinister it would be evident by now surely? I have been living with this since 1984

They put it differently- they said if it’s due to that, we can’t diagnose dyspraxia. I’m wondering why, if acquired dyspraxia exists?

Despite what doctors said at the time, I have my struggles and I’m definitely not within the range of normality even if I have coping strategies by now - most of which involve avoiding or accepting insulting comments with fake laughs.

Whatever the cause, I need a label for my mental health ! Don’t want to call it dyspraxia due to the guidelines, fair enough? Call it acquired dyspraxia, Mickey Mouse syndrome, emmental brain disorder, whatever, but at least I could say “I’m not careless/stupid/lazy/distracted, I have *that*!”

It’s almost impossible here to approach a Gp for a non-urgent referral request, but yes, I suppose that’s the next step. I’m just so disappointed

[Tom fod]

Sadly those with acquired dyspraxia miss out on getting the recognition and support needed.

For example If someone has a brain injury or stroke and related difficulties as a result, if they can be discharged by OT/Physiotherapist then it's cased closed and there too often isn't MH support for dealing with the resultant difficulties.

Identification maybe needs to be separated from cause?. It might be worth seeing what the Dyspraxia Foundation can advise or at least make them aware of your experience. You won't be alone.