Jane Holmes Blog: Know your stuff to ensure your child gets what they needBy Jane Holmes
September 12, 2012
Jane Holmes is chief executive of Wokingham-based charity Building for the Future which provides support and activities for disabled children.
She set up the charity after her daughter Kitty was born with severe cerebral palsy.
There is a saying 'the squeaky wheel gets the grease'.
Never is that more true than when trying to get something that your child needs.
I know I have a reputation for being extremely pushy and for making a nuisance of myself.
But I don't care, if it means my daughter gets whatever it is I have been fighting for.
Take the NHS. I've lost count of the number of unnecessary rows I have had with secretaries or appointment clerks.
Last year I wrote about trying to get an appointment with a particular consultant because my daughter was having trouble breathing at night.
Only after numerous telephone conversations and emails, with a few threats thrown in, did we get the appointment we so badly needed.
I shudder to think where we would be if I was polite and accepted everything I was told.
If I waited patiently in the queue and behaved myself, my daughter wouldn't even have a pair of proper shoes to wear.
Or a communication aid, or a place in a school which properly meets her needs.
Doctors, especially the more junior ones, don't like being challenged.
But arm yourself with the medical facts and refuse to be intimidated.
Then cultivate an authoritative tone and fire away, cocky as you like.
You will know you've got it right when they ask you whether you have medical training.
Or when a friend asks you to go along to appointments with them, because they know you settle for nothing less than the best.
You don't have to be unpleasant about it, but assertiveness is essential.
With any kind of medical condition it's crucial you are not left hanging and that questions do not go unanswered.
With someone as complex as my daughter,
it is left to parents or carers to piece it all together. It often appears that the various departments involved don't communicate with each other and an holistic view-point is rare.
So just another set of skills in our repertoire – staying one step ahead of the medical profession, overseeing care and being the squeakiest wheel you can be.