How to make a fuss

At an antenatal appointment this week I was ushered into a room before my main appointment so my urine and blood pressure could be tested. The room, a side room off the waiting room, would be private if only they'd shut the door. And, of course, if they hadn't tried to do my tests in the same room at the same time as they were testing someone else. I made a fuss of course, I am good at that. "It's not our normal practice" they told me. "Then why are you doing it now?" I asked. So they waited, not, I think, because they thought I was being reasonable, but because I was making a fuss. Or as I think of it, making a fuss. The reason? As I explained to them, it's no good for patient confidentiality, mine or the other patient's, if they discover something wrong with one of our tests.

But I have a particular interest in/chip on my shoulder about this issue that stems back to the early weeks of my daughter's life. In the area in which we live, due to high density housing, a large number of immigrants and poverty, all newborns are offered a BCG injection to protect against turberculosis. I was in two minds whether to have this for my daughter, largely because of the associated swelling and scarring and not wanting my beautiful newborn's perfect skin to be sullied in this way, but a belief in herd immunity won out and we duly went to our appointment.

If you are not the kind of person who believes that environment affects behaviour you have probably never been to this particular health centre in Tottenham, North London, where the TB jabs in our area are offered, I used to be a patient at the GP practice there but found it so demoralising I left very quickly. Once I rang over fifty times before getting through to a receptionist. Upon telling the GP I finally saw about this he agreed,saying he'd had the same problem one day when trying to call in sick. Unlike my current GP where you get what you want by being nice to the receptionists, there I found you only got acknowledged by being as arsey as possible.

Anyway the appointment started badly when everyone there for this injection was asked to fill out a form about their baby including whether they are HIV positive. I understand of course that medical professionals need to know the answer to this, but the forms were being collated on the counter where any other patient walking by could see them. This would not only impinge on my daughter's confidentiality if the answer were yes, but on my own too. On principle I objected.

We were then escorted into a room with another parent and baby. "Are you intending to do both of these children in this room one after the other?" I asked. They said yes. What did I do? That's right, I made a fuss. It wasn't going to happen, I explained, for two reasons. First, I did not want my child, or the other child, to get upset by the post injection screams of the child who went first. But also because it was possible that I, or the other mother, might have medical questions or issues to ask that should be kept confidential. Not just HIV which was clearly on the agenda as a question, but anything else too. "You'll have to wait here in the corridor then," they told me. Which I did. But I was fuming. What they were trying to do as a time saving measure ignored some of the basic tenets of healthcare that we expect our modern health service to offer.

It reminded me, in those early days, that I was not only my own health advocate, but my daughter's, and that just because she was a baby did not mean she didn't also have the right to respect, dignity and privacy as a patient. What's more, that there are times when she will only get that by making a fuss, something I am proving very adept at teaching her.

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.