Limits and horse-shite

Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation.  I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.


There was an article in yesterday’s Observer reporting on a survey showing that Brits are less likely to ‘rate their doctor’ online than restaurants or holidays. Parking any engagement with the quality of the study (because it’s late), the article underlined the importance of patient feedback in informing change in the NHS and suggested people were wary because they thought nothing would change, the NHS didn’t care, they would get staff into trouble or their care would be affected.

Today I dutifully logged on to NHS Choices to rate my GP. I completed the boxes and fed back. I then read the other five comments about my surgery. An anonymous poster recommended the surgery two years ago, but complained about the leaking roof. One person complained about the lack of continuity of care. Two other very recent posters raised the same issue I’d outlined in my previous post. The sixth person, anonymous in June, wrote an essay about the wondrous care they’d received over the last 15 years. Here is an extract;

I really can’t think of how they could improve it. I marvel at how well-run it is, and how intelligent and knowledgeable the doctors are, and how kind and responsive the other staff are. When I was very ill at home once, they sent round a community nurse every day, and doctors visited me at home and phoned me several times. On another occasion I failed to respond to a letter asking me to make an appointment because of some blood test results, and the doctor personally visited my home and left a handwritten note, they were so concerned. 

Whoa. We’ve been at the practice for 15 years too and haven’t had a sniff of this uber-service. I want to know more. How do you access this level of healthcare? Marvel at how well-run it is?? A handwritten, hand posted note after failing to respond to something?  Responsive staff? Home visits? Concern???? This patient’s 15 year period spans the entire roller coaster experience of LB’s diagnoses and everything that came with that (too laborious and lengthy to even start recounting).  Where was the GP in all of that?


I can only hope this feedback is a plant… Ironically.

Patient choice? My arse

Ding dong time this afternoon with the Practice Manager (PM) of our GP surgery. They’ve introduced a crackpot system where you can no longer book an appointment with a GP. You have to arrange for a GP to call you back that day to assess your need for an appointment. It’s all in the name of patient centred care and choice.

So I had a 30 minute call with PM  who’d swallowed the health policy rhetoric manual but could not explain why I couldn’t make an appointment without a screening call. The gig was that I could agree to a GP call-back and potentially get an appointment the same day, or I could be allocated a loser slot, out of hours on a Tuesday night or Saturday morning.

In response to the (numerous) concerns I raised, she tried to persuade me that GPs were so flexible in this new system that call-back could be arranged to coincide with tea-breaks for people at work who didn’t want to discuss symptoms in front of colleagues, and that an online option existed so patients could type their concerns quietly. No reflection on how unrealistic or burdensome this was.

Yes, in some contexts of course it’s fab to have the option of managing some health related issues by phone. I howled for that when a GP rigidly insisted on ‘seeing’ LB in the surgery before re-referring him to neurology after he’d spent a night in A&E recovering from a massive seizure. But not a blanket screening system. That’s just crap.

Eventually, she suggested making an out of hours appointment in 2034. I told her I’d just crawl off into a corner and quietly die. She didn’t budge. It was screening call or crappo appointment. That was the system. I said I should probably contact the local paper about it. She booked me an ‘in hours’ appointment in a few days with my GP.

So, this new system is also going to feed into and reinforce health inequalities highlighted by, and remaining/increasing, since the Black Report. Fucking great.

A succession of sick notes

Dear Iain Duncan Smith,

I’m writing about ESA and my seventeen year old son, LB. I know the process and procedures around claiming ESA are framed by a ‘scrounger’ rhetoric. Underpinned by the constant questioning of the integrity of those who are unable to work. I also know this is a spurious position; under-claims are greater than over-claims or fraud. We have so far had to provide two sick notes over six months (well three really because we had to get one to cover the 3 month backdated period). I think then an ‘indefinite’ sick note will do. I have tried hard to understand why this is necessary. What is underpinning the blanket need for a succession of sick notes? Is it simply a tool of attrition? The ‘scroungers’ will be worn down by having to return to their GP three times? GPs, in turn, will surveil their patients more closely for signs of cheating or trickery? I don’t know.

I didn’t want to get a sick note for LB. I didn’t want to because he isn’t sick. I didn’t want to because we have a ton of official paperwork highlighting and poring over his ‘deficits’ in micro detail from a gaggle of professionals; geneticists, ed psychs, paediatricians, teachers, social workers, psychiatrists…the list is endless.

I didn’t want to because it made me feel sad.

I found it more upsetting when I found out, through the allowance stopping as soon as it started, that I needed to go back for a second note. And then, again, after the reinstated allowance stopped, a third note. Perhaps if you had made it clear that three notes would be needed at the start, it would have been easier. But then I suspect my GP would have written the three on the spot, negating the need to return to the surgery (and take up his time). You may have been trying to close that loophole by deliberately making the process opaque.

Oh. I should probably add that I went to the surgery. Not LB. His GP doesn’t need to see him to know that he has learning difficulties. I wasn’t going to put him through the experience of being given a ‘sick note’ by the GP. He wouldn’t really understand that and he can get anxious going to the doctors. So it’s all a charade really. With a touch of farce.

I’m writing really to ask if you could try to get over your fixation with (fictitious) ‘scroungers’ and, instead, gain some understanding of how the process is experienced by disabled people, or their carers. And maybe shift the money invested into such a clunky, laborious and inefficient system into supported employment programmes that actually work in practice. LB wants to work. He is hoping to become an assistant caretaker.

Yours sincerely,