Less Disney Princess and more Oliver Twist.

The life of a Parent/Carer can feel like being an impish rogue, asking for more than you deserve. To make life good, we knock on the door of services across SEN, health and social care asking,

“Please, sir, I want some more…!”

I was never a fan of Oliver. The images in the TV show growing up of grimy streets and sloppy gruel wasn’t appealing. I could smell the malodorous characters and I can still see the vulnerable and fearful image of Oliver daring to say how he was really feeling. I feel the nauseating unease as I ask for more support through the necessary emails, forms and phone calls.

The persistent cuts hitting the most vulnerable mean many families loving someone with a disability are being stretched. Short breaks opportunities are not available, care packages cut and recruiting staff a logistical nightmare – in part owing the pittance which is paid.

The pleading and often fighting for your child’s needs isn’t a new phenomenon for parents and carers. I have written before about how ‘fighting’ becomes a way of life. At each step and request for increase comes with the malodorous threat of further cuts if we dare even ask.

It’s a well oiled phrase.

“Obviously, you can go back to panel and make a case for more care but you run the risk of them deciding to cut the care package you already have.”

This level of vulnerability further isolates parents supporting children and adults with complex needs. It feels as though proving inadequate is a norm while failing to meet demand with services is routine. When the people who are supposed to support families, are the ones wielding the power that can ultimately make life more difficult, the balance is all wrong.

How different would the interface with services feel if parent carers could seek help in the confidence that they are believed rather than the fear of judgement and scrutiny?

Imagine the shift in dynamics required if services trusted families in the way we are expected to trust services?