Thursday, 28 April 2016

Undiagnosed Children's Day 2016: A call for coordinated care

Tomorrow is the fourth annual Undiagnosed Children's Day, led by SWAN UK (Syndromes Without a Name).  Our day to tell the world about our cause. Our lives.  Our fabulous children. 

But it is also our chance to showcase the cracks.  To really demonstrate the real challenges of living without a diagnosis.  It is our opportunity to advocate for change and explain the reality of being uncatogarised in a health and social care system driven by 'pathways.' 

It's kinda like crossing an ocean without a compass.  We'll get there eventually, but we may hit a different destination, clipping the rocks every now and then.  It's not that everyone on board each of our little boats isn't behind us, it just hard to know where to steer and it can all just get very circular, pretty fast.

One of the key themes emerging from the day this year is around care coordination. Navigation if you like.  It's a topic I could bore you on for hours (seriously, that analogy could've gone on to painful levels - dive bombing seagulls, unexpected pirates - it could've run and run). 

But this year I'm going to keep it really simple. Because it's hard to frame the need for a solution when the challenge is so difficult to explain.  I could never have really understood the complexities of the landscape that families manage without having lived it.  So I have tried to lay it out in one snap shot. The only way I can think of - with a big sheet of paper and a marker pen. 

There have been many fabulous visual maps explaining the complexities of living with a disabled child (I'm am neither cleaver nor original here).  For example, the brilliant professionals map doing the rounds on Twitter and the fabulous (and artistic) mind map from Orange This WayBut this is ours.  This shows the professionals who are involved in, or influence the life of one little undiagnosed four year old.  This is our little world.  Our map with no map. 

And so much of this picture is also our fabulous team.  One of the difficulties for families in talking about care coordination is a fear of being interpreted as criticising professionals.  In fact, professionals often step in and plug gaps voluntarily, in the absence of clear coordinated services.  The challenge is not with specific statutory bodies.  It's the need for national, top down coordinated and interacted service provision - even when there is no 'label.'

A lack of integration is undoubtedly a challenge for disabled children across the board.  But with no diagnosis or prognosis, the boxes become un-tickable and ambiguity blurs the picture even further.

And the impact this ambiguity? I think it was summed up in one of our needs assessments.  Our previous local authority needed to put a name in the box marked 'lead professional' at the top of the form.   The person responsible for navigating all of this. So they put the only name they could think of in these ever confusing, undiagnosed circumstances.

That name was mine.


Thursday, 21 April 2016

Wonderfully Weird

It’s almost that time again.  Just one week to go until the fourth Undiganosed Children’s Day (29th April).  It’s our time to look forward, look back and realise how far we have come.

And realisations are quite apt for me right now.  You see, I had a moment the other week.  A penny dropping ‘oh’ moment.  It’s probably a pretty obvious one to most people, but it came as an unexpected surprise to me.  You see…we are weird.  Like, proper weird.  Not just a little bit odd. I’m talking full on dancing down the street backwards, singing Aretha in a velvet catsuit levels of weird (figuratively speaking you understand….for the most part).

What got me to this moment was a string of phone calls.  We’ve been experiencing the joyous transition from a Statement of Educational Need to an Education, Health and Care plan recently. I was after some advice to try and unravel exactly how this was supposed to applied in our circumstances.  And so began the calls. ‘Erm, so my son has no prognosis or diagnosis.’…’he’s paralysed on and off throughout the day’….’yeah, you won’t have heard of that before, because there’s no name for the symptom’…’he’s on research studies’…..’he’s got multiple unexplained neurological episode types.’….’no you can’t call them seizures.’…’erm, you’ll just have to write unknown episodes.’  <Cue perplexed scribbling of pen.>

Yup.  We are most definitely of the weird variety.   And I’d never really picked up on it before.  There’s been hints of course.  I mean you would’ve thought the reams of genetic testing for rare conditions would’ve given it away, but I kinda just ran with it.  Then came the understanding that not every disabled child will cover the trio of needs.  Educational need - tick. Health care need – tick.  Social care need - tick.  No prizes for a full house sadly, just a boat load of paper work. (Cadbury need to sponsor some of these forms.  Seriously, this is a great brand opportunity.  If a DLA form came with a free Dairy Milk, I would love you a lot).  The system often struggles to co-ordinate across all three as it is -  throw in the inexplicable and it all just gets brain numbingly confusing.

And recognising the weirdness actually makes it all a bit less frustrating.  It helps to explain why so often we fall through the cracks in the system.  Why everything is so unco-ordinated.  Why so often it feels like we are wading against an unrelenting tide of beurocracy, unable to chart a route through the constant ambiguity.  It explains why people so often don’t know what to do with us.  Why I so often get the metaphorical shoulder shrug.  Its fair enough - they probably think we know we’re weird.  Realising it makes it make sense.  In fact it’s almost liberating.

But then it’s also a bit scary.  A bit isolating.  A bit lonely. 

Only we aren’t alone.  And that’s why I’ve never recognised how strange this path is.  Why my perceptions and expectations of the world we inhabit have been slightly off base.  A word often used for my boy is ‘complex.’  It’s a word I slightly flinch at.  I want to jump in with a ‘oh no, really he’s not.’  Not because I’m in a strange world of denial, but because he’s just not.  In comparison to many of the families we know, our life is simple.  Chilling by the ocean with a martini kinda casual (ok, that has literally never happened, but you get the point.)

You see, I have a slightly skewed context.  I have spent the last four years surrounded by the undiagnosed community.  A community that is immensely varied and totally unquantifiable.  Families regularly tested by heartbreaking, often inexplicable challenges. We don’t fit in boxes.  We don’t make sense.  We are all different.  Outside the norm.  Impossible to categorise. 

This has become my normality and my entire understanding of life with a disabled child.  And thank god it has.  Because when I look back and imagine finding our place, reaching our unsteady acceptance without it.  Well that’s just terrifying.  If we had known how strange this road was when we started on it, I don’t know if we could have kept the optimism.  When the constant tests came back inconclusive, when things got worse, when the ‘we don’t know where this is headed and we don’t know why’ conversations were had.  If we hadn’t been surrounded by those who had been there, lived through it and bounced back a hundred times over.  If we had felt we were following an uncharted path alone. 

Except the thing about rare experiences is that they can all be linked under one banner.  They may all be different, but with the same overriding theme. And our banner is a simple one -  ‘undiagnosed.’

And that banner is getting stronger, more recognised.  On the fourth Undiagnosed Children’s Day, SWAN UK (Syndromes Without a Name) is bigger than ever before.  Local volunteer representatives are in place in communities across the UK, offering on the ground co-ordination.   The voice of undiagnosed families is not only being heard locally, but at national level, with families speaking at Westminster to the All Parliamentary Group on Rare, Genetic and Undiagnosed Conditions.

So thank you to the undiagnosed community.  For making us less different.  For finding strength in numbers.  For treading your own paths in parallel to us, whilst keeping us moving forwards.  And most of all for being so fabulously, wonderfully weird.