Co-production Week 2017

Co-production Week 2017

Wednesday, 24 May 2017

Making the invisible, visible. Co-production in three areas

By Jane Green, Equality, Diversity and Human Rights + Co-production groups member.




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’. 

Trustee work 

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. 

Where are we now? 

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.

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