There are so many layers in the system where vulnerable families are being let down, but something that happened again this morning really hit a nerve — so I’m sharing this for awareness more than anything.
My daughter has ADHD and is supported by an NHS ADHD nurse. To access that support, we already have to travel over 30 miles to every appointment. She also has suspected autism, and even that car journey alone can leave her overwhelmed and physically unwell.
Her next check-up was booked for us, with no input on whether the date was actually manageable. In this case, it’s scheduled for the day after I’m admitted for my fourth spinal procedure. I’m not just her parent and carer — I’m also living with degenerative disc disease, and there are times when I physically cannot push through, no matter how much I want to.
But like many parents in similar situations, cancelling last minute risks discharge from the service altogether. So you’re left trapped between your own health, your child’s wellbeing, and the fear of losing support.
Their “compromise” was to offer a telephone consultation — which sounds reasonable, until they then insisted we still travel over 40 miles just to get basic observations done.
I refused. The impact that journey would have on her just isn’t worth it. Eventually, they agreed for our GP to carry out the checks and for me to send the information across. But the fact that the original suggestion was made at all says everything about how unsupported parent carers really are.
This isn’t humane. And while I understand the pressure services are under, I cannot understand putting families in positions like this — where every option comes with guilt, stress, and compromise.
The NHS is supposed to be a national health service. So why do families have so little say in where and how our vulnerable children receive care?
Something has to change.
Have you had similar experiences?
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