Friday, 30 January 2015


You might think life is tough for a child with Prader-Willi Syndrome.

There’s the hunger, the anxiety, the learning difficulties, and all the rest of the blah blah blah.

There’s also the poor circulation, giving rise in my PWS daughter’s case to really cold hands and feet.

But I really don’t see what she’s got to complain about. She gets to wear cosy thermal socks. 

Not only that, this morning, when we awoke to snow, and realised her boots had been stored in the outside shed overnight, she sat on the stairs admiring her nail polish, whilst her dad knelt on the floor hairdrying her wellies warm.

Life of bleedin’ Riley, I tell you.

Song is Eels - To Lick Your Boots

Sunday, 25 January 2015


The path leading to Outpatients
The Royal National Orthopaedic Hospital in Stanmore, Middlesex, is on a hill. Some of the corridors are on a serious incline. To get from the outpatients reception desk to radiology you could sit a wheelchair, give yourself a push with one finger, and get there faster than a back-peddling UKIP press officer. Maybe it’s the hilliness (not ideal when many patients have problems with mobility) that has led them to run as astonishing hospital car parking policy of not charging. I stood there, clutching my fistful of pound coins,scanning the horizon for a sign or a meter, unable to compute the sheer reasonableness of the situation.

We visited the sloping specialist centre because my daughter has been complaining of pain. People with PWS don’t often do this (unless they are talking about hunger pangs), as they usually have a very high pain threshhold. To give you an idea of how high her tolerance is, my girl was on her feet two days after a seven hour spinal fusion operation, and home two days after that.

It’s her back that’s causing the worry at the moment. Six years after her two ops, for the first time, she’s been saying it hurts. “I am in extreme pain, Mum,” she’s been telling me, although I’m not sure she knows what ‘extreme’ means, and to my critical motherly eye it seems to be more along the lines of occasional ‘mild discomfort’. However, ‘mild discomfort’ to someone with PWS might well manifest itself as ‘extreme pain’ to someone without it, so we decided it needed checking out.

First there was the rigmarole of the appointment with the GP, who had to make a referral. Next there were the phone calls trying to find out why she hadn’t yet received an appointment at the hospital where they carried out her original operations. Then there was the dawning realisation that the evasive admin staff were essentially telling me they had a completely unmanageable waiting list, and it would be better to try and get seen somewhere else, so then it was back to the GP to get referred elsewhere, and then there was another wait, and now, finally, we were here. If I have one piece of advice for any parents when it comes to hospital appointments it is this: chase it up. Hang on: two pieces of advice: 1) chase it up, and 2) chase it up again.

So we arrived, were sent down an indoor ski-slope to radiology, watched in horrified fascination as a snooty woman kicked off about having to wait for 15 minutes as she had a terribly important meeting to go to, were seen by a lovely nurse, and went in for an X-ray.

I stood behind the screen, peering over the radiologist’s shoulder, checking out the computer image of my daughter’s Wolverine-style insides. It’s still a shock to see the two titanium rods, bolted to her spine, which has now fused around them. It looks like one of those X-rays you see on YouTube compilations showing weird things people have swallowed; her scaffolding makes it look like she’s eaten a clarinet. Every time I see it, I expect Acker Bilk to burst in through the door, looking really angry.

Once the X-ray was done, we belayed our way up to the main waiting area and were soon seen by a consultant. He spoke directly to my daughter and listened carefully to us. He couldn’t see anything untoward from the X-ray, but didn’t fob us off because he understood the Prader-Willi pain thing. He told us further investigations were needed and arranged for a CT scan to be booked. 

That’s in February. The follow-up appointment’s in April. The wait goes on. 

At least we won’t have to pay for parking.

Video is Peter Gabriel - Solsbury Hill