Broken systems, broken people

Today was the dreaded budget review. For those of you not familiar with acronyms, let me throw out a few that will confuse the fuck out of you as much as they did me the first time I heard them.

NHS: National Health Service (gentle start, bear with me)

CHC- Continuing Health Care: a package of care allocated to those deemed worthy. Usually decided with the help of a (rapidly changing) 'standardised' assessment tool by Panel Gods*

CCG- Clinical Commissioning Group: The local NHS group responsible for the CHC pot of funding. Other responsibilities include recruiting 'appropriate' Panel Gods* 

EBD- Emotional and Behavioural Difficulties: NOT my kid being a shit. Genuine issues. 

SLD and complex needs- Severe Learning Disabilities and complex needs: I think if you look this one up there's a photo of B right there. 

ASD-Autism Spectrum Disorder: a neuro-developmental disorder comprising primarily social and sensory difficulties. 

SLT- Senior Leadership Team: School Gods. Thankfully mine are AWESOME!

SLT (yup, same acronym, different meaning)- Speech and Language Therapist: a near-extinct breed of human, often seen clutching PECS books while running from one meeting to another. Always overworked and underpaid. 

OT- Occupational Therapy- see above, but replace PECS book for gym ball and dodgy looking vibrating snake.

EP- Educational Psychologist: mysterious human, rarely sighted and notoriously slow at paperwork. The good ones are gold. The shit ones not so much. Also overworked, not quite as underpaid. 

EHCP- Education and Health Care Plan: Magical legal document enabling comprehensive integrated care support. But beware, to obtain one you will need to complete a thousand bizarre and pointless quests, and possibly bequeath your firstborn child.

PB- Personal Budget: chunk of money provided by the local NHS/social care. Money must only be used in certain ways (six o clock on Tuesdays when it's raining, for example) to meet the needs of the person it's intended for. All recruitment, retention, training, payroll, employer's liability etc etc is independent of the budget and falls on primary caregivers. Essentially, me. 

*Panel Gods: a motley crew of random professionals, expertly sourced by the CCG to sniff out weaknesses in evidence and scrutinise piles of paperwork for the purposes of austerity. Possibly the spawn of fire-breathing death dragons and Theresa May. 

I have used most of the words above today in a formal capacity, doing my very professional job of.... mum. Mum to a very special kiddo, that's for sure, but Mum none the less. So, THE MOTHERFUCKING BUDGET REVIEW. Sorry-not-sorry if the swearing offends you, but what offends me more is the broken system.. the broken system which is progressively and extensively breaking the very people it exists to support. 

In quick recap for those of you fortunate enough to not have to deal with any of this shit: B has severe and complex holistic care needs which cut across all domains of his function; health, education, emotional development, personal care.. the list goes on. Pretty endlessly as it goes. Government recognise (vaguely) their obligation to support and help vulnerable members of society. Government have minimal financial resource (at least they pool minimal resource where it matters) so decide personal budgets are the way forward. This is done via the NHS for B, as his needs are primarily grounded in medical issues. A personal CHC budget is allocated to those vulnerable people (and their families) who hit (very strict and insanely high) criteria. Said budget can be used for meeting the needs of the vulnerable person, through care provision, equipment provision etc (as long as you comply with conditions, which are restrictive and numerous). Every year, the budget is reviewed by the CCG. The CCG are the local NHS decision makers of who gets what and how much. As we all know, the NHS are in dire straits. (I wish there was a band gag I could make at this point.) CCG send a children's CHC representative to assess via standardised tool whether B still hits criteria. All involved professionals are invited to a multi-disciplinary team meeting to discuss the whys and wherefores and gather appropriate evidence. CHC rep then goes back to the CCG armed with evidence to present at panel. B is reduced to a nameless, faceless pile of paperwork and a bunch of Panel Gods (none of whom have ever met him) discuss paperwork and make a life-or-death decision on our care budget. 

This time the CCG fucked up. They contacted me back in August and organised a review meeting date, which was today. I immediately contacted all B's professionals to give them a heads up and send them the assessment tool so they could gear their evidential reports around that. Remember, this is not my job. This is the job of the CCG. I emailed again last week to chase up professionals, see who would be in attendance and ask for copies of reports from those who couldn't come. I also asked who had been contacted by the CCG directly (this IS their job). The answer? Not one single person. Not one single person knew the time, or the date, or the evidence they were supposed to contribute to the review from the people who had requested the fucking review. The only reason any of the professionals working with B had submitted reports, gathered evidence or were going to show up at the actual meeting was because I had busted my ass communicating with everyone. The alternative to that wasn't an option- no reports or evidence at panel would have meant Panel Gods were well within their rights to slash B's care budget. The optimist in me wants to hope that was a genuine admin fuck up, while the cynicist in me can't help but think it's potentially a thought through tactic to slyly shave money off people's PBs.

And that's before we've even got to the actual review. Let's fast forward to that little gem of a meeting. Today, from 12-2pm, I sat in a room, essentially listening and contributing to a dialogue on how difficult it is to meet the needs of my child. There was a lot said; phrases like 'serious risk of harm to himself and others,' 'uncontrolled seizures,' and 'behaviours that challenge' easily rolled off the tongue. My personal favourite had to be the report from the behaviour analyst. When his challenging behaviour gets *really* bad they take data on him, to try and establish any sort of pattern or function to his mad ways. They usually fail- it's B. As ever, he's predictably unpredictable. But there was one little line which almost pushed me over the edge.

'In one week B has attempted to bite, scratch or pinch adults or peers 761 times.' Yup. I shit you not. 761 times. Luckily I'd flicked over it the night before via email, so the gut punch wasn't quite as forceful the second time round. And don't get me wrong, Team B were doing a stellar job- the whole point of this meeting was to evidence the reasons B needs so much additional care. But seeing that stuff in the stark objectivity of black and white print is a total killer. To get through on the daily, you normalise. You laugh. You make light of all those times B faceplants some random's crotch, almost drowns, or posts the iPad down the back of the fridge for the fifty-millionth time that day. The monochrome officiality wipes all that grey stuff out, and in those meetings, it slaps you hard in the face. Objectively, what we do every day is batshit crazy.  

Usually parents' views aren't greatly considered and don't hold much weight, so I'd gone to the trouble of writing up a formal, professional report as an offering to the Panel Gods. I also hold myself well in meetings and am able to eloquently express my experience-grounded opinions and evidence them accordingly. This, my friends, is a double-edged sword. People round the table treat me with respect and as an important part of Team B; they listen and take notice of what I have to say- a most definite win. However, in those settings people also seem to forget I am his mum, and my resilience and determination somewhat negate the very real, very raw emotional impact on me as a parent. I come out physically exhausted, psychologically drained, and feeling like I've done ten rounds with Mike Tyson. It's so. Damn. Hard. And yet, what's my alternative? It's do or die. I put my big girl pants on, and I step up for the sake of my beautiful B. Not because I'm amazing. Not because I'm better at this than anyone else. But because I refuse to let a broken system break us. We need this support to tread water. Without it we drown. And to steal a flippant shampoo phrase, everyone-everyone-is worth it. B well and truly included. 


  1. I wanted to write 'it's not fair' but that's just a rubbish phrase, sorry. The whole sorry system needs throwing out and rethinking (in a day, not over the next 10 years). The system needs to be devised by someone who has been through this, and who is capable of ignoring people who say there is not enough money. It's crazy.
    (and as someone who is waiting for a similar faceless panel to meet and who has spent days poring over documents and writing a 'serious' letter, I get it.) #sendbloggers

    1. As if you don't have enough things to do in the day. Like actually caring for your kid and meeting their needs. The hoops we have to jump through are insane and enough to drive any typical person mad, let alone those under constant chronic physical and emotional stress. I hear you. High five. Good luck with the Panel Gods. I'll burn some incense and dance naked next full moon...

  2. Arguing for your child's needs to be met takes so much out of a parent. You have shared the reality so well.x #sendbloggers

    1. Yup. This. Keep on keeping on lovely lady. #sendbloggers


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