Author: Rebecca Stewart - Co-Founder at Rare Revolution magazine
What happens when 'All systems fail'?
Date:09 November 2016 Here in the Rare Disease community we know all too well what it is like not to fit in a nice neat box. At a time when the National Health Service, here in the UK, is stretched to breaking point, even patients with more “mainstream” conditions are finding it difficult to access the care and support they need, so those who fall into the category of rare or undiagnosed really are running an uphill battle. These battles don’t confine themselves to medical care. Nothing in our society caters for those outside the tick box. Accessing education, Disability Living Allowance, Motability or Occupational Therapy all require you to fit in a nice neat box on a form. Successfully navigating social care and education with a rare disease requires a PHD in form filling and appeal letter writing.
According to SWAN UK “Approximately 6000 children in the UK are born each year with a syndrome without a name – a genetic condition so rare it is often impossible to diagnose”.
Six thousand new families every year who will have to battle to have their concerns about their child’s health believed, wrangle to access genetic testing, fight with the Department of Work and Pensions over Disability Living allowance, Carers allowance and Motability and beg to have their child Statemented so they can receive the support they need to go to nursery and school. All this, at a time when parents are fraught with worry and exhausted from the often demanding and complicated health issues their children are facing.
This story will be familiar to many of the 3.5 million people living with a rare or undiagnosed disease in the UK.
But what happens when ‘all systems fail’ and the letter writing, appealing and begging just doesn’t work?
It is hard for most to believe, that in our first world country, where Tim Peake has entertained us all from space and technological advancements push boundaries on a daily basis, that there are children who cannot go to school because their condition doesn’t fit in with the Government’s idea of disabled.
When my sister, whose son was diagnosed with Xeroderma Pigmentosum (XP), a skin repair disorder meaning he cannot be exposed to UV light, was told he wasn’t disabled enough for his statement to allow him the one to one support he required to go to nursery and school we couldn’t believe what we were hearing. Let’s just take a minute to digest that. A child who cannot go outside during all daylight hours regardless of the weather, without it resulting in their skin, eyes and all soft tissue severely burning, who will burn inside buildings (unless windows have been made safe with UV blocking film), who will burn standing under a UV emitting lightbulb, who will burn through clothing and who is 10,000 times more at risk of skin cancer than the general public, is not considered disabled enough! A child with XP who cannot go outside without very restricted protective clothing and facial visor which, in itself causes issues of over-heating and dehydration not to mention the psychological distress to wearing such visually stark protection, is not considered to suffer enough to access the help they should be entitled too.
My sister had to appeal and fight her corner to get her son the support he needed to allow him to go to his local school. She was successful but sadly this is not the case for many.
In 2016 there are children who are missing large periods of school because their paperwork doesn’t match their needs.
There are families on the breadline because someone who sits behind a desk with no medical training thinks their situation doesn’t warrant support.
There are children and adults who are suffering without medical treatment and support because our system does not allow the very people who are most in need of help to receive it, simply because it means changing the boxes.
A system where back ache allows you to benefit from Motability allowance but not being able to use any mode of public transport without burning and putting yourself at risk of aggressive skin cancer does not.
And if it is this difficult for a condition with a name it is impossible for those whose conditions are yet unknown.
So what does happen when ‘all systems fail’?
What happens is a revolution, an army of Mum’s, Dad’s Aunties, Uncles, Grandparents and friends all inadvertently becoming rare disease advocates. They become experts in their rare diseases and they will stop at nothing to make sure everyone living with a rare disease can find help and support when they need it most.
For our part at Rare Revolution we want to make sure all these stories are told, all accomplishments heard and to connect those that are lost so they can be found.
It’s time for a #rarerevolution.