Carers Assessment? No. Groundhog day

This weekend is officially a catch up weekend. Beyond boring but necessary. I started this afternoon with a mountain of paperwork and a canny system of ‘bin it’, ‘deal with it’, ‘park it’. The ‘deal with it’ pile had the carers assessment form on the top. Oh dear. Regular readers will know that this (mythical???) assessment has been dragging on for years. The form in front of me was different to the version I failed to fill in before (because it was beyond inadequate). I sat at the kitchen table, determined to fill it in.

So ‘caring’ is divided into ‘practical tasks’, ‘personal tasks’, ‘mobility’, ‘getting around’, ‘health’, ‘communication’ and ‘other issues’ (including mood swings, anxiety, aggression and so on). Each section includes a list of things to tick (‘communication’ has support with socialising, advocating, and interpreting) and a section for ‘carer’s views’. I ticked all the relevant boxes (most of em) but wasn’t sure where to start with my views. What does it mean?

“I’d hoped LB would be able to go out and about by himself but now, but suspect he ain’t gonna be able to do that for the forseeable future.”

“I find it pretty rubbish supervising an 18 year old boy in the bath.”

“It’s all pretty fucking shit really but it could be so much better if I knew that adult services wasn’t a big hole of crap-all.”

Anyway, I left the ‘carer’s views’ sections and got to the end of the form. Only to find this little beauty:

This form is the first part of a Carer’s Needs Assessment. Would you like a full carer’s assessment to be undertaken?  Yes?  No?

Now I don’t know who is coming up with this crap, and I don’t know what the intention is behind it. It’s obstructive, ill thought out, insensitive, meaningless and time consuming. I don’t know how many meetings I’ve attended thinking I’m ‘doing’ a carers assessment. Or having a carers assessment done to me.

When I started sorting through paperwork today, I was struck by how LB had his own folder of paperwork bursting at the seams. No one else in the family has a file really. Just general stuff. Why is there so much paperwork around certain children/adults when the outcome is less than acceptable? A ‘special needs industry’ exists in the UK with a wasteful, usually ineffectual and pointless focus. But embedded within that industry is a level of tyranny. That these are hoops that parents, carers and disabled people have to jump through. Regardless of outcome.

Over 15 years into this gig now, I’m going to say now, I seriously hate it.

Can we have  transparency, honesty and realism about what is what? And what is likely to be what in the future?

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.

The adult service

Realised I’d double booked myself for this Friday and had to cancel a visit from LB’s new social worker. The adult social worker. I then realised that a) I didn’t know her name and b) I didn’t have any contact details for her. Other than ‘ASW, Friday morning’. “Hey, crap bollock”, I hear some of you shout, “Why didn’t you write down the details at the time?”

I dunno. But I’m not sure it’s my responsibility to fact find in this situation.

When I met ASW, with LB’s current social worker, a few weeks ago, it was a pretty underwhelming situation. Chittering on, as I filled the kettle, I lightheartedly mentioned that LB said he didn’t want to meet her.

“Well,” she said, bristling, “I am his future.”

We sat at the table for ten minutes, having a forgettable chat (well apart from the bit where she defended A4E’s performance in the local authority). And made an appointment for Friday. I’m not sure what the point of the last meeting was, or this one because nothing is made clear. But I obviously needed to reschedule.

I emailed LB’s existing social worker. Asking for ASW’s contact details (and whether  she remembered her saying she was his future). I got an email back, ignoring my second question but stating the following;

  • Adult care manager is ASW, you can email her on xxxx. She will be his care manager when he transfers to the adult service. Once his care package is up and running she will then close to her. However he will remain open to the learning disability team. If you require further support after the closure to ASW then you just contact the team and they will re refer you to a care manager that is more than likely be ASW.

Eh? Sorry, but what does any of this mean? Is this social care speak? Are there some missing words? What does ‘close to her’ mean? And ‘open to the learning disability team’? What does that mean??? And why all the jiggerypokery if the outcome ‘more than likely’ is  always going to be ASW? What does any of it mean???

And why are you emailing me this crapshite piece of opaque, insider, meaningless jargon when I’m terrified enough about what the future will be like for LB?

Jobcentreplus (or what the fucketty-fuck?)

Well. Where to start with this baby? First, I am going to try not to swear (other than repeating any swears that happened during reported naturally occurring talk. Second, this story follows on from The Atos Questionnaire, so if you ain’t familiar with that sad and sorry tale, click here.

So LB is now in receipt of Employment and Support Allowance (despite a news blackout that he was actually entitled to it).

All good in the end then? Well maybe. If he actually received it.

Today I dredged deep (after a lovely, lovely day at an autism conference in London yesterday) and found the energy? resources? reserves? strength? I don’t know what I found really, just something (which is remarkable after about 14 years of consistently shite support/sevices) and called Jobcentreplus to ask why, after the initial back payment of three months, LB hadn’t received a bean.

“Hello,” said JCP blokey, “I need to speak to LB to go through some security questions first.”
“Mmm.. not being funny, but unless you want to ask some Darth Vader and the Death Star Canteen type security questions, you’re probably better off asking me.”
“I need to speak to LB. He is in receipt of the allowance.”
“He won’t be able to answer your questions. He has severe learning difficulties.”
“Ah.. Oh yes, I see now. I should have asked these questions in a different order, then I would have known. Then I could have avoided that embarrassing question.”
“So, let me try and work out what’s  happened here then. Oh yes, there is a stop on the account because the sick note provided is dated from 16 November to 16 February. You need to go to the GP and get a medical certificate to cover the period from 16 February.”
“Er, we originally provided an indefinite medical certificate in February and we were asked to get a second one covering November to February. We sent that ages ago.”

Let’s take a moment here to reflect on what I’ve just written.

  1. LB is given an indefinite sick note by the GP. What is an indefinite sick note?
  2. Despite having an ‘indefinite’ sick note, the GP had to produce a second sick note to cover the three months before the original sick note. Backdating an ‘indefinite’ sick note? What does that mean?
  3. [1] and [2] had to happen despite 14 plus years of medical, health and social care reports detailing in painfully minute detail, LB’s ‘deficits and shortcomings’ (in official eyes).
  4. Despite [1] and [2] (and even without [3]) we then get a 20 odd page Atos questionnaire to complete to provide evidence of the efficacy of the ‘indefinite’ sick note.

Well, the swear constraints can fuck right off. This system is beyond shite. And horrendous to experience.

So, back to JCP blokey.

“Oh, I see what’s happened. When they got the second medical certificate, they entered that, and overlooked the original certificate. That’s here but they’ve only entered the November to February dates. That’s why there’s a block on the account.”
“Mmmm. I need to sort this out.”
“Bloody hell.”
“Well yes, I’d have probably said something similar myself in your shoes.”
“Bloody hell.”
“I’ll email them straightaway to sort this out. It will only take about 3 hours to change it. The account should then be unblocked.”
“When you say them, who do you mean?”
“Oh, the benefits people. That’s who has to sort this out. I’m just a contact person on the helpline.”
“Thank you. Goodbye.”

What else is there to say really?

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 Annual Review and Melinda Messenger

Crapholes x 10 (000). It’s annual review time. Again. Number thirteen I think…

I hate annual reviews.

For those who ain’t familiar with the system, they are (I think) the opportunity to revisit LB’s Statement of Special Educational Needs and change anything that needs changing to bring it up to date. Given that it was written when he was four, he’s now 17, and changes are sporadic over the years, it is a bit of a pointless, bureaucratic exercise. For example, his Statement still includes the report from the psychologist guy against whom I made a formal complaint that was upheld years ago. There is no proper re-visiting of any aspects of LB’s life as it is now. Just a bit of polyfilla here and there, in a bodge job worthy of a whole episode of Cowboy Builders.

‘So what actually happens?’ I hear you ask, edging closer to the edge of your seat…

Well, not an awful lot, to be honest. You can request particular professionals attend, but I gave up that process years ago when I worked out anyone reasonably relevant didn’t bother attending anyway. Way too busy doing important things elsewhere. You get some random people, like Connexion workers or the occasional transition social worker, pitching up. But hey ho.

My despondency at the process was further underscored a few weeks ago when, at a night with my ‘speshy pals’, I was told that that LB had been entitled to Employment and Support Allowance for the last fourteen months. Er, Ok. So no one mentioned this last year? What the fuck?

The bottom line is, I don’t really understand the point of annual reviews. Lip service? Tick box exercise? Well maybe it’s about time the experience of parents is taken into consideration by the Education Authority. As fellow parent @AlexaDWilson commented on Twitter, it’s a ‘lowering experience’ and we really don’t need any more of those.

So, tomorrow at 1pm, think of me. And LB.

And if anyone has Melinda Messenger or Dominic’s number, can you send them in our direction?


Update: Well. I’ve gotta eat my words this time. Still depressing, but good turn out. Connexions person and LB’s social worker were spot on. Lots of good ideas and suggestions to support him, particularly from his teacher, and a lot of laughter. Number 13 was a revelation.

The processes that stifle

Sometimes I crave spontaneity when negotiating social life with a crazy dude like Laughing Boy.  Sadly, the experience is usually drenched in daft rules and unhelpful bureaucracy, especially when it is to do with health, social care and education.

Take one example. I asked for a referral to an endocrinologist because I wanted to ask some questions about the chromosome disorder LB had been diagnosed with many moons ago.

Continue reading

Flight Nightmares: The signature

Rosie and I were booked on very exciting trip to Genova, leaving on her 13th birthday. She got a cow case in advance. A few days before, I couldn’t find my passport.  Panic.

Got accountant mate (anon) to sign the forms to get a speedy replacement (just had enough time luckily if I travelled to passport office the next day and waited for it to be processed). She filled in the form (A) so carefully, then got confused about a box she signed. She put a line through the signature, then filled in a second form (B) leaving the box blank, just to be safe.

Off on the bus to London, queued at passport office for about 40 mins, then handed over the form (B) to the most deadpan person ever. I blathered on about the Genova trip with Rosie, leaving the next day, blah blah blah. 13th birthday, blah blah blah. She gave the form straight back to me and said that mate hadn’t signed the box. ‘Ah, no, here’s another version where she did sign it’, I said cheerfully, pulling form (A) out of my bag. ‘It’s got a line through it, she will need to sign it again’, said Deadpan.  Sob. ‘She works about 10 miles in the countryside from hometowny which is 1.5 hours on the bus, which is 20 mins on the tube from here, it’s not physically possible’, I blubbed. ‘Fuck off you loser’, she replied.*

credits: thanks to Tracy for literally spending a day searching with me

*She didn’t really swear, but said words to that effect.