Clare Johnston
A FEW days ago, returning from the shops, I opened my letterbox and retrieved a few envelopes before casually leafing through them.
One was addressed to the parents of my youngest son, so I opened it first.
In doing so, I detonated a grenade in my heart because, inside, was a report sharing the results of an assessment that had been carried out on him – without my knowledge.
He’s at an age now when it’s no longer right for me to share the more specific details of his life.
It’s up to him to say what he wants to say about his autism.
But this report was written as though it were from one professional to another.
It was full of specialist terms and jargon that meant nothing to me, but included a clanger of a detail which was completely unnecessary, disputed by all who know him and upset me for days.
No one warned me the report was coming. It left me baffled and confused and I tried for days to track down the person who wrote it.
And after all this, I was left wondering what on earth is going on in our health service that this is how they communicate with parents and patients? Treating them like nameless, faceless individuals with whom they share only the barest details, cloaked under their professional terminology and leaving us to try to figure out what they mean.
I complained and have received an apology. But I wanted the department concerned to know that if they are so stretched they can’t take five minutes out to call a parent and explain the results of an
assessment, then at least they should make their report accessible and selfexplanatory. At the other end of the age scale, we have an elderly loved one struggling with dementia, and another hopeless system whereby it has been left to the family to complete the jigsaw around what care and support is available to him. The family have made phone call after phone call chasing up that help and support, only to be placed on waiting lists and, ultimately, months on, still be on the starting block. The terrible scenes in hospitals over the last few weeks confirmed what we already knew, that although some brilliant work is done there, the system needs urgent reform. Yes, we will all have to pay more for it. We also need to take a hard look at how we’re using it. But the end point has to be a place where no one should have to fight for care and where the emotional wellbeing of patients and their families must be respected, too.
Some brilliant work is done in the NHS but the system needs reform