The end of year assembly

This morning was LB’s end of year assembly. A time of celebrating and sobbing. This year kicked off with Shine by Gary Barlow. A couple of young girls opened brilliantly with the first line or so then everyone else kicked in with a range of voices, shouts, words and signs. Everyone was rummaging around for tissues within seconds.

It’s the same every year.

I remember one year, when LB was about four, I’d just bought a video camera which I was really looking forward to using. The kids were brought on to the stage dressed in colourful tunics (for the ’round the world’ theme) and stood in a semi circle. I managed to locate LB in my viewfinder, with his angelic little face, pressed record and then they opened with “What a Wonderful World“. The rest of the footage is the floor, feet and chair legs and about 10 seconds of LB and his classmates singing and signing;

I hear babies cry, I watch them grow,
You know their gonna learn
A whole lot more than I’ll never know…

Not a dry eye in the house.

I think some of the emotion is about seeing such a diverse group of kids performing their socks off but it’s also seeing the staff interacting with them. They are an exceptional bunch who offer unending support and encouragement.  In this setting, unlike most others, our kids have no limits.

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.

Benefit cheaters

The whole business of who should inform people of the benefits, support and services they may be entitled to has been playing on my mind for the last few weeks. In some work I’m doing, involving interviews with people with long term conditions, there are consistent reports of people not knowing. Not knowing they were entitled to x, y or z.

Similarly, I was surprised to be told by mates that LB has been entitled to Employment and Support Allowance since he was 16. Eh? Wha? Are you sure?? How do you know? (Other parents told them). How could I not know?

I cast my mind back over all the meetings I’ve had with various profs over the past year or so:

  • There was that DWP woman who travelled 100 miles to see for herself whether LB could manage his own finances.
  • Two annual reviews with a Connexion worker and a social worker in attendance, as well as school staff.
  • At least three meetings with a transition social worker (to increase LB’s care package (from 4 hours a month, to 4 hours a week and discuss the future).
  • The Direct Payments police.
  • School nurse, paediatric neurologist, adult neurologist, GP, local authority funded care agency… and so on.

Now I ain’t suggesting it is the responsibility of any one of the above to inform us of benefits. I’m just surprised that given the huge layers of bureaucracy and meetings that having a child like LB involves, we could get to him being over 17 without a mention of ESA.

On Twitter yesterday, a couple of people said there are welfare rights experts based in CABs (currently under threat from government cuts). But it boils down to the old saying; you don’t know what you don’t know. I didn’t know I should contact the CAB at this point (or a year ago). And, given the amount of time I have spent in meetings like the ones listed above, I suppose I didn’t think I needed to.

For me, there is an opaqueness to the benefit system in this country. So much information seems to be passed on from parent to parent, disabled person to disabled person, support group to members, rather than through ‘official’ channels.  I’ve had a shufty at the government website providing information about ESA and other benefits. Reading the information, it wouldn’t have crossed my mind that LB is eligible. A quick look at the other benefits/allowances left me as much in the dark. It took seconds to be told about ESA, by mates, and to be emailed the number I then rang to organise it. Seconds.

Makes me wonder, really, who is doing the cheating?

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.   

The panic button

I bumped into an old mate, Nicola, in town today on the way to work. She, too, is in that horrible, horrible space between children’s services and sweet fuck all.  After a quick catch up (that was pretty negative because of the sweet f.a. situ), she asked if I’d heard of seizure alert dogs. Her son, 17, has developed epilepsy, she doesn’t want to put him on medication and her son’s consultant ain’t very happy about this.

“Well, funny you ask because….” I started.

“Ha ha ha ha!!!!!! You always know something funny about things, Sarasiobhan!”, she laughed.

“…I read about this woman,” I continued, “she had a seizure alert dog who was brilliant. He sensed when she was about to have a seizure and nudged her, so she could take medication. She had a panic button installed in her flat that he could press with his paw to call the paramedics if she became unconscious…”

“Wow, that is amazing.  I will definitely look into it for Billy”, said Nicola, paying proper attention at last.

“The funny thing was, if he felt she wasn’t paying enough attention to him, or felt like a bit of attention from the paramedics, he would walk over to the button and stand, with his paw raised, ready to press….”

“Hahahahahahahahahahahahahahaha”, Nicola howled, hysterically hanging on to my arm. Her laughter was infectious and we stood, a couple of hysterical women, in a sea of commuters and Summer school students. Bit of a chuckle and tonic.

More details of the story of the young woman with the seizure alert dog, and other young people’s experiences of epilepsy, can be read here.