Sick notes and excuses

Had a ‘chuckle’ this morning while reading tweets from mothers about their disabled kids off sick (or not) from school. It reminded me of past experiences. A key task for parents of disabled children is to weigh up your child’s ‘sickness’ status and manage nursery/access because the ‘sick bar’ is lower for disabled kids. LB now has an indefinite sick note (have I mentioned that before?) but he wasn’t any more unwell than most kids when he was a tot.

In those days, he went to the university nursery a couple of days a week while I did my degree. They soon found him a bit of a handful (despite talking the talk in terms of meeting his needs) so staff regularly contacted me to collect him. Fifteen years ago of course, mobile phones were a bit of a rarity so the nursery staff had my lecture/seminar timetable to track me down. It was pretty frustrating to get hauled out of lectures to go and pick him up. Regular heart sink moments.

“He seems a bit under the weather. We think you should take him home for the rest of the day”, they would say, handing over a grumpy little parcel of healthiness.

Halfway through term though it was reading week. Whoo hoo!!! No timetable just uninterrupted study time in the library. Such a treat. One day, after about half an hour of reading, there was a tannoy announcement in the library;

“Would Sarasiobhan please go to the nursery to collect her sick child. Sarasiobhan to the nursery please.”

Unbloodybelievable. Seriously???? You have got to be kidding me??? I sat there, surrounded by books, in my chilly little study carel thing, feeling like I had a massive arrow over my head indicating it was me. Of course, in a university of 16,000 students, no one had a clue who I was but I felt completely exposed. I packed up my stuff and wandered out of the library. Furious and frustrated. I walked about for a bit wondering if I could ignore it. “If only I hadn’t gone straight to the library..” I muttered to myself. I went to get a coffee in a cafe. Standing in the queue, deep in thought about my options, I vaguely noticed an A4 sheet of paper pinned to the noticeboard by the till. In large black font was typed;

“Urgent! Would Sarasiobhan please go to the nursery straight away to collect her sick child.”

Eeek!!!!  Game over. It was clearly serious. I legged it over to the nursery, dropping books and bits of paper, feeling guilty about the wasted ‘fume’ time.

“Ah hello Sarasiobhan.  I’m glad we got hold of you. LB seems a bit under the weather so we thought you ought to take him home for the rest of the day.”


Thinking about it, I’m not sure that indefinite sick note did start in November 2011.

Layers and layers…

Still a bit grumpy this week, sorry. Dunno why. Unfortunately, the grumps weren’t helped earlier by remembering the experience of LB’s epilepsy diagnosis last year.

I won’t go over the whole sorry, sad story but just focus on a tiny part of it. The GP. Just to illustrate the layers and layers of crap and nonsense that parents of disabled children (and others) are subjected to.

LB was discharged by paediatric neurology after investigations into some absent type seizures he’d had. They said he needed to learn to manage his anxiety.

Next thing, I get a call from his deputy head teacher, while I was at work. She passed the phone over to the paramedic who reassured me that LB was now conscious after full tonic clonic seizure but on his way to A&E in the ambulance….

Surely pretty high up on ‘parents’ worst nightmare’ scale?

He was discharged after six hours in A&E and the next day I rang the (random) GP and filled her in with what had happened.

“ I wondered if you could re-refer LB to neurology?”
“Well you’ll have to bring him in for an appointment..”
“Well I need to see him before I can make a referral.”
“Why can’t you just refer him?…He gets very stressed at the doctors and has obviously just had a pretty stressful experience.”
“Well I need to see him before I can make a referral.”
“Why? Why do you need to see him? I don’t understand. What is seeing him going to do?”
“I need to take his blood pressure.”
“WHAAAAA???? Whaddayamean????? He was in A&E for six hours yesterday having everything checked. WHY DO YOU NEED TO CHECK HIS BLOOD PRESSURE???”
“I’m sorry Ms Sarasiobhan, but I cannot make a referral without seeing the patient. It would not be accepted by the practice.”
“Are you listening to anything I’ve been saying? He had a referral to neurology, after being seen by the GP six months ago. He spent 6 hours in A&E yesterday after a huge seizure. Why can’t you just write the letter???”
“If I was to write the letter not having seen him, I’m afraid I would be lying. And I’m not prepared to lie.”
“Don’t lie!!! Just say what happened. He shouldn’t have been released in the first place without proper investigations, he needs to get back there ASAP. Why can’t you just make the referral?????”
Sniff. “Well, I’ll write the letter but I’ll have to phrase it in a particular way. I don’t think it will work.”

Four weeks later we get a letter from the hospital saying that LB had turned 16 since the original referral. He needed to be re-referred by the GP to adult neurology.

Grumpy? I dunno.

The Club of the Lesser Valued

I’ve been thinking about ‘diagnosis’ a lot recently (see here for reflections on LB’s diagnosis) and, in particular, the process by which parents are given their children’s diagnosis of some form of impairment when the impairment ain’t obvious. This is partly because of a project I was tangentially involved with which explored the experiences of mothers of children with cerebral palsy.  One of the main findings of that study was that participants were angry and upset when they found out that the diagnosis of CP was discussed among medical professionals several months (or longer) before it was disclosed to them.

In discussion, the paediatrician on the research team said that diagnosis was probably delayed because CP can be difficult to diagnose and health profs didn’t want to unnecessarily alarm those parents of children who turned out not to have CP. Apparently around 20% of children, in her experience, would turn out not to have CP after presenting some possible symptoms.

Now, I ain’t no scientist, but I couldn’t help thinking that this meant that the feelings of 80% of parents were being sidelined in favour of the 20% of parents who, presumably, would be pretty chuffed to bits that their children didn’t have CP after all*. I couldn’t understand why the emphasis was on not upsetting the smaller number of parents.

I got to thinking that maybe it was to protect the health profession against some form of legal action for mis-diagnosis, but this doesn’t really hold as an explanation.  Paediatricians don’t have to authoritatively diagnose children at that early stage, but could, instead, suggest that one of the conditions they want to rule out is CP. Emphasising that this is a very tentative ‘could be’ at this stage.

An email exchange with fellow twitteree, @lizith, a PhD student, involved speculation that health professionals may feel a need to protect some parents from a diagnosis.  Some parents may not ready to accept a diagnosis. This argument has always struck me as a form of paternalism and doesn’t have much substance based on the accounts of parents I’ve interviewed in the past who have largely been very keen to know.

So I can only conclude that this focus on the feelings of the minority is a reflection of broader responses to disability and impairment. The 80% of parents of children with CP have joined a new club.  The Club of the Lesser Valued.  The complexity, depth and reach of the negativity associated with membership of this club continues to surprise and depress me.

*I can remember before LB was diagnosed, but once the health visitor had identified serious concerns with his development, I was told to take him to an interaction type group called something like Learn to Play. There were about six kids at the weekly group and a pre-school teacher counsellor. I think we were all in a pre-diagnosis liminal state, so the atmosphere was pretty weird.  Apart from one little dude, Elliot, the kids tended to do their own thing.  The parents sat awkwardly talking about anything other than what we were doing there. One week, Elliot’s dad turned up with a bag from the Early Learning Centre. At the end of the session, he gave each child a little wooden Brio train.It turned out that Elliot had been released back into the mainstream and wouldn’t be returning to the group. Still makes me feel weepy, remembering that moment. Suspect Elliot’s parents don’t give it an awful lot of thought.   

Surprising Clare

Last night I met up with a group of friends for a bucket full of fizz, tasty nosh and a lot of fun.  We all meet up a few times a year and have done for years now.  They are a bunch of five very different, but each remarkable, women.  We became friends as our kids were enrolled in the same academy for crazy little dudes pretty much from the get go.

Over the years, an awful lot of crap stuff has come and gone, often to do with our little dudes, but other stuff too.  Real crap.  These evenings are a space to vent, moan, rant but mostly laugh.  And drink huge amounts of cava.  I fell into bed in the early hours of this morning, chuckling and remembering the summer of 2006, when we surprised Clare.

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