Thursday, 9 August 2012

Sweating the small stuff - being your child's health advocate

When it comes to the big things - saving lives, developing groundbreaking procedures, being free at point of use etc - the NHS is pretty brilliant. And as a user you take for granted that it will be, so used to it as we are. But as a parent whose child uses its services quite a lot compared to many, it's the small things that rile.

Take for example the coffee shop at Great Ormond Street Hospital that wouldn't give me a cup of hot water to warm a bottle in case I burnt myself despite having just sold me a cup of hot coffee. (I know, I could have warmed the bottle in the coffee. But it was my coffee, I wanted to drink it.)

Or the anaesthetist at this world famous children's hospital who suggested my daughter was grumpy one time as she was prepared for an operation. "She's not grumpy," I said grumpily, "she's exactly how you would be if you hadn't been allowed food or drink for hours." She may have been grumpy but I would have expected a doctor used to dealing with children, and parents, regularly to know that coming across as even slightly critical at a time when you are worried and vulnerable is a bad idea.

Like the nurse on a ward who called my daughter a chunky monkey when she was six months old. "She's not chunky, she's just right," I said. The nurse back-pedalled quickly saying she was just so used to dealing with premature or very sick babies that it was nice to have one who was normal size. I forgave her. She wasn't to know we'd had weight loss issues in my daughter's early life and that her putting on weight was both difficult and emotive.

I had to ring the same hospital this week to go through some details for a test we were having. Last time, I told the relevant department, we'd had a very difficult time, the mere application of cream causing huge distress and the insertion of a cannula so difficult that my daughter fought off four doctors and nurses and we had to abort the whole attempt. It was awful, but oh I was so proud of her.

I wanted to speak to someone about an action plan for this time and ensuring we have someone particularly good at finding veins in wriggly toddlers. Her answer? "We do this all day every day, we're all good at it." This wasn't the case last time so why would I believe it this time? But more to the point, this person can't have had her own children. Because if she had she'd have known that that answer doesn't cut it, because they might do it all day every day but not to my child they don't.

I remember comparing notes some time ago with a friend whose child has also had a lot of medical appointments. We are, she told me, their only advocate. We mustn't feel cowed or belittled or that questions are ever stupid. We mustn't be afraid to demand a different doctor or dispute a course of action or tell someone to stop a procedure. Because we are the only person in the world who will do this, regardless of the fuss it causes. And the parents, faced with the alien environment of the hospital in which the medical professionals work every day, can see past the conveyor belt of doing this all day every day and remember while it may be routine to the staff it is not routine to our child, who will be scared and discombobulated and maybe in pain.

There was an amazing documentary on television earlier this year about Great Ormond Street Hospital and the very difficult surgery, often experimental, carried out there. One of the doctors got it. He used to be a bit dismissive of parents worried about a general anaesthetic or a procedure that the hospital is used to doing, he said. But then his own son had a routine operation for an ingrowing toenail, and he had to take him for his general anaesthetic and hold him as he was put to sleep. And that is when he got it. That when it's your child it doesn't matter how routine something is, how the staff may do it all day every day, how well your child is in comparison to others. All that  matters is that they have the best possible care and are treated with dignity and respect and as if they are the only child in the world having this done. Like I said at the beginning, the small stuff. Except it's massive.