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 uncategorised 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's 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 clever nor original here). For example, the brilliant professionals map doing the rounds on Twitter and the fabulous (and artistic) mind map from Orange This Way.
But 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.