Tag Archives: care manager

Imagination and recognition

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Rosie was off to see a mate last night. We found out recently that this mate’s dad was the sleep guy who discharged LB from his sleep study all those years ago when it became apparent LB was not going to respond to the study interventions.

“Hey! Can you ask P to let his dad know that LB’s now sectioned, and that he’s part of the collective of health and social care professionals who did zip all for him…? Cheers“, I quipped. Though of course it ain’t funny.

Accountability? I can’t bear to work out the cost of the combined salaries and hours and hours of meetings with H/SC profs [too numerous to remember each and everyone of them] over the years, but for LB to end up sectioned a few months after turning 18, suggests these interactions were largely pointless. Other than sustaining some pretty weighty salaries in some cases, I can’t think of any productive help these meetings generated that couldn’t have been suggested by anyone with a bit of common sense. And LB ain’t alone.  We know of four of his (slightly younger) peers who have been sent out of county in the past 18 months.

It’s as much about recognition as accountability. Recognition that ‘expertise’ in this area is often limited in effect. This is never acknowledged but it would be a lot easier to manage if it was.  With this recognition, we could have saved all that time travelling to, and in, meetings, and muddled along (as we did anyway). This could have been underpinned by the reassurance that if things took a turn for the worse, there is a very local nifty little mental health/learning disability unit. A unit that will take LB in and give him some proper attention.

Mmmm. Slight problem here is that the unit is not widely known about. We found out through a friend of a friend. The profs couldn’t even deliver at the point of crisis. I still can’t quite get my head around the fact that this unit is based about 50 metres from the office of the psychiatrist who discharged him days before he was sectioned.  And that a few weeks earlier, on February 6th, I sent the following email to his Care Manager;

Hi [CM],

Is there a number I should ring in a crisis? [LB] is at home (as it’s Wednesday) and he’s been quite threatening to me and himself.

Thanks,

Sara

The research group I work for focuses on understanding, using and improving people’s experiences of health and social care. I’ve always hoped that this blog offers an insight into what it’s like to be the parent of a disabled child and negotiate the challenges and obstacles created largely by the lack of effective support, services and general attitudes towards difference. I never imagined the direction it would take though.

Right now, in the space that’s left by LB’s removal (which I’m experiencing as a mix of peaceful relaxation and sporadic gut-wrenching memories that are winding in their intensity), I’m struck by the ongoing crapness of H/SC. While LB is being very well cared for in the unit, we haven’t heard a sniff from anyone other than Oxon County Council demanding back contributions of £500 towards LB’s care. Despite some fairly tense phone calls about this (based on the fairly straightforward point that he ain’t had any care, and we just have a unusable glut of direct payments in a bank account), a week or so ago, the letters keep arriving.

I rang the Fairer Charging  [I know] office again to ask them to stop sending these reminders.

“Oh, yes, I can see a note on the file, saying this is being looked into.”
“Yes, so could you stop sending any reminders about it?”
“I can’t do that. These letters are automatically generated.”
Spontaneously? With no human involvement in their generation? LISTEN.TO.WHAT. YOU’RE.SAYING. 
“Well that ain’t good enough.”
“There’s nothing I can do about it. I suggest you ignore them.”
“Could you try and imagine, just for a moment, what it’s like for us, to have our son sectioned partly because we had no support, and then continue to receive demands to contribute towards that non-existent support?”
“I can’t stop the letters but there is a note on the file.”  

This exchange, like so many others, underlines the lack of imagination and empathy, and general crapness within health and social care. Small point, but I would have appreciated some contact from CM since the email I sent on March 15th stating “LB’s punched his teacher. What can we do?” She’s been back off leave for a week now and could have spent a moment sending a brief response. She’s LB’s Care Manager, silly. Nothing to do with you now he’s an adult. I disagree. LB isn’t a discrete entity, disconnected to social networks. He’s part of a family. And that also needs recognition.

LB’s support plan

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So the dreaded visit from LB’s Care Manager passed off painlessly today.

LB sat very patiently while she gave information, apologised for using jargon and went through his support plan. Then she got to the big question:

“What three things are most important to you in your life?” [these can relate to any aspect of your life – aspirations, outcomes you wish to achieve or things you are keen to maintain or be able to do again.]
[silence]
“LB what things are important to you? …”
[silence]
“What is important to you? It can be anything at all… Have a think…Is it your mum and dad? Or your family?”
[silence]
“Can you think of one thing to start off with?”
“Bus spotting.”
“Ah. That’s good. Can you think of anything else that’s important to you?”
“Lorry spotting.”
“Brilliant. One more thing…”
“Coach spotting.”
“Fantastic.”

The letter

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So, we get back from a nice weekend away, with the sun still shining, and there’s a letter from LB’s Transition Care Manager (ASW).

I am writing to confirm that we have been successful at panel and that your indicative budget is xxx per week or xxxx for a full year. I understand you wish to receive the budget as a direct payment and manage the account yourself. I enclose a support plan that needs to be completed before any money is released. I’m happy to start the support plan for you as a draft and then we can arrange to meet to discuss any questions you may have.

Well, I have quite a few questions.

Kicking off with who is the we? Given ASW has never met LB*, I’m not sure who it refers to?  I’ve met ASW for about 20 minutes in total and she ain’t ever met LB, so seems a bit too familiar for my liking.

And why were we successful?  Was there ever a question mark over the need for an adult care package? I find it pretty offensive really, suggesting we somehow won something. Or is this a (waste) product of current government welfare reform. WE have been successful in the wider context of cuts. Great.

What is an indicative budget? If these terms are going to be used, they should have some sort of explanation or it is meaningless (and frustrating).

Is this budget for just the period while LB is still in full time education or indefinitely? If the latter, does that mean that LB will have his case closed once this care package (xxx a week) is in place?

And if yes, how the fuck are we supposed to manage our lives, with full time jobs, around the equivalent of 10 hours a care week?

That’s it really. I’m not going to bother repeating the way in which careless, jargon filled communications like this are experienced.

Transition really is shit.

*I know.

The adult service

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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?