Tuesday, 5 October 2010

After holiday silence....

I am ashamed to have not written for so long...
Summer holidays contributed to my laziness and a
slight disruption to the usual routine. But here I am.

Ready for the next fight of the year!

With the beginning of September and the new school
year, came new government's policies and... CUTS.

CUTS is the dreaded word in the world of carers and
disabled people. They mostly affect the poor and most
vulnerable. As always. Here as well.

I was informed, that after a year of waiting for the
re-assessment and testing for additional difficulties,
the school is no longer able to pay for it. Therefore, my
girl and several others are left as they were, and we, parents
are to get a referral from our GP.

In my case, I need Cirwen to be tested for dyscalculia and either
dyslexia or dyspraxia. This is due to the teachers' concerns
voiced during the last parents meeting in July.

Funny thing is our UK system. School SEN-Co says I need
to go to the GP.
So I did.
GP said go to Dyslexia Centre.
So I did.
The Centre says "yes, we will happily do the test.
It will last 3 hours and will cost you £440. "
I hyperventilate....

From then on I am on the quest to find out whether
there is another way to do this through normal NHS
channels or Local Educational Authority (LEA) rather
than private.

LEA tells me about a form a GP can fill for me which
will go to a Common Assessment Framework, who are
an independent from LEA or NHS and they might take
the matter into their hands. Might, nothing sure...

Back to the GP. He doesn't know anything about CAF
and asks me where to obtain the form.
I don't know...
He takes the phone numbers and a week later I receive
a letter that he spoke to all the same people and he's
none the wiser...
I despair.

I calm down and call the pediatrics clinic where Cirwen
was originally diagnosed and ask whether they have the
ability to do the tests, and what do we need for that.
Simple answer: "we'll do all the tests, the GP has to re-refer
your daughter as the records are not held for that long."

Back to the GP. I had to provide him with the name, address
and telephone number to the clinic.
Phew! Now I need patience.

Although a huge weight has fallen off my heart, that all will be
sorted without selling off whatever I can to fund the tests,
I am appalled at the lack of communication and information
available to the professionals in UK. I would have imagined,
that the GP should have the details of the only pediatrics clinic
for the area he operates in, and what services, help that place
offers. The LEA and school should also have been provided with
the simplest alternative in case of the lack of funding from the
council or government.

But hey, that would be a perfect world wouldn't it?


  1. Yes that would be easier, but how else would moms be proud of the fight they are doing for their kids? That little angel came into the right hands.

  2. Yes, I am proud by all means, but could do without those extra white hair... :-)

  3. I'm glad you were able to finally come up with a solution, it is a shame that you had to do all that work to get to it however. I suspect that in a similar situation in this country a parent would run into many of the same roadblocks. It seems to be a universal problems with agencies not communicating with each other.

    Good to have you back!

  4. I'm sure the problem is all over the world. At the moment in UK National Autistic Society is pushing for the new bill to be passed to improve this.

  5. Good to see you back again, but sorry that it's been such a difficult chase through the system.