Systems & Carers
Three short stories today about systems. To me, the stories are linked by an inflexibility that may serve the system but leaves the person caught in the system despairing. Dealing with systems takes an awful lot of time and energy. But I’ve realized as I try and extract myself from the many systems that I’m trapped in, that removing oneself from the system takes just as much time and energy, if not more. The systems don’t want to let go of you – you validate its existence and provide fuel for its upkeep.
Firstly, I finally got paid for the Birmingham conference. Not by Birmingham university that ran the conference. They are still holding out for me to prove who I am before they release a payment. And in the process they’ve lost my birth certificate. Very kindly, the woman who booked me, paid me from her own company and she’ll chase up the Uni to reimburse her. And I’m still waiting for the full payment for the Halifax conference. Perhaps I’m being unreasonable – I keep hearing that it’s important to have the carers’ voice at these events but it sounds like platitudes when there is little recognition of the needs of the carer – in this case, the financial realities of carers.
Secondly, Steven went with his support workers three weeks ago for his latest psychiatrist’s appointment. This was arranged following my letter requesting a review of the medication, in the light of the diagnosis of Steven’s liver problems. She was very supportive and agreed to a reduction programme and would write to the GP with a timetable. Not to me, even though I’m the person administering the meds. The surgery told me that they can’t discuss the matter with me as Steven is an adult. I wrote to the GP last week, pointing out that if I’m kept in the dark about the plan, the reduction programme is unlikely to get off the ground. Eventually they agreed to give me a copy of the fax the psychiatrist sent them. It can’t be emailed or sent through the post – I have to collect it tonight during my respite evening out. “Oh – and can you bring proof of your identity with you”. We’ll forget the fact that I’ve been with the surgery 20 years.
Finally, the personal budget saga. I’m sticking to my guns because my preferred way of managing the budget works best for me. It will piss Hillingdon off because my way doesn’t fit in with their distrusting, 24 hour surveillance system of running a personalisation scheme. But what the heck! Yesterday, I had an unexpected free hour, so I thought I’d see how long it takes to set up individual payments from my direct payment bank account to the support workers’ accounts. And at the same time, I could set up the ” real time” tax payments as well. Admittedly, I’d worked out all the figures beforehand but it took me just over half an hour – 5 transfers to each of the support workers; a transfer to my account to cover the cab fares and an HMRC payment. I felt quite chuffed and reassured that it will only get quicker in the future. And the prepaid card company only made 50p out of Steven, rather than the £3.50 if I’d done each transaction, the Hillingdon way, directly from the card. Hillingdon don’t like it because I’m bucking their system for auditing what I’m doing. They don’t get that a carer’s life is full of snatched hours like these.
I realized after that awful telephone lecture from the direct payments manager the other day that on one level, she was talking to me like I was a member of staff (on another level, she was talking to me like I was a rancid turd). And that gives the game away. For their “let’s outsource everything” systems to work, they can’t let go. personalization, I think they see as just another outsourced service – in this instance, outsourced to a parent or carer. So, the carer running the budget is seen as an employee, albeit, an absolute nuisance employee.
What I feel all three stories have in common is that none of these systems acknowledge or respect the realities of life as a carer. Two things that bind most carers I know are a dire shortage of time and low incomes. It doesn’t matter if you, the carer, think that personalization is the best thing since sliced bread. It demands a lot of your time, just for it to work on even the most basic level. Most carers that I know don’t have that time, nor the energy, to engage with personalization, even if it could have a beneficial effect on the person they’re caring for. For personalization to work, the carers have to be on board – it can’t work without them. And the professional agencies should be doing everything they can to make the carers’ role in this as easy as possible. By the way, I’m saving for another post the question of how personalization can possibly work for someone who doesn’t have a carer. I’m not convinced that personalization even reaches those people in care homes who haven’t got anyone to take on this massive workload for them. Sadly, far from trying to make personalization easier for the carer, my experience reveals the opposite. Additional hurdles are placed in your way, simply because you are a carer. Over the last few weeks, I’ve spoken to five different professionals involved in Steven’s budget but none of them have told me basic, really useful information. Like, it takes three working days from a payment off the prepaid card arriving in the recipients account.
Yesterday, one of the Get Steven Home group suggested that the time I spend on the payroll is “chargeable services”. Hillingdon would fall about laughing at that suggestion. They are willing to outsource to a private company who will charge you for managing your payroll. They are willing to let a card company make money out of ” providing an intervention service”. They are willing to commission care agencies that make 100% profits out of care packages. But a carer is expected to take on a huge burden of work for free – out of love.
I wonder whether the big Carers charities would be interested in taking up the reins on this one. After all, we’re coming up for National Carers week. Oh no, silly me. Most of them are in it too – reliant on the big systems for substantial parts of their funding.
From → Social Care