After being forced to
give up work – I was a professional autism educationalist - due to
Ehlers-Danlos Syndrome (EDS), I was amazed at the length of time it took to get
diagnosed and receive help. This was
because EDS can be mis/underdiagnosed
and considered a rare condition. Two
other diagnoses followed, one of which is also rare and one I am very familiar
with, as late-diagnosed female ‘autism’.
I have been a carer
for my eldest son all his life as he presented with various conditions including
autism and dyspraxia. So I wanted to use
some of my experience and skills as a carer and autism specialist and was
elected to Trustee for Carers
Support West Sussex. Although not
well enough to attend all meetings I was delighted to find out that the support
meetings were run with the carers, co-producing where they wanted the support groups
to go; with the charity providing the structure to facilitate that.
Relating to my EDS I didn’t
know anyone with it and during the time I visited hospitals, meetings doctors
and physios and similar, this had not been mentioned to me. So I joined the Ehlers-Danlos UK Support
charity. Unfortunately they are one of
the most underfunded and unknown charities with only a handful of
employees. Social media has helped as we
can’t always be well enough to move around. Due to funding issues and knowing that we as EDS sufferers know what we
need - and what support is or isn’t around - the charity asked for some of us
in each county in the UK to be a volunteer co-ordinator.
This involves
disseminating information, especially the new classifications that came out
this year, plus raising awareness and supporting others, as well as fundraising. So we all work together in any way we can,
bearing in mind we are all diverse. We make it accessible to everyone, so
immobile people can join us online - and everyone benefits from service users
to professionals. Where are we now? We
are working hard with medical practitioners to make this ‘rare’ condition less
rare and more supported.
Whilst ill, I had no pathway, no information,
in fact, disbelief at times, and no overall overseer of my EDS condition. This
led to me physically breaking down. I
have brought and am bringing this to the notice of the CCG and NHS. I am delighted that I have now been invited
to work on a rheumatology pathway. This is looking at capacity needs, to be a
part of a rheumatology group, so that it can be recognised better. We want to
see how things can be more effective, more economical in the long run, and more
efficient for all. And hopefully a good example of ‘co-production’ in the health
sector.
No comments:
Post a Comment