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Systems & Carers

April 7, 2014

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

  1. Pauline Thomas permalink

    Carers week is when they start to patronize us. Telling us how wonderful we are.

    I recall many years ago, when our LA were beginning to talk about closing down the day centres in our borough, and several parents, me included, began to argue against the wisdom of these changes, the Carers charity in our borough was right behind us. However, when the Assistant Director of social services got wind of it, she asked the Carers CEO if she would accept £5000. to survey the local carers for their views on the coming closures and report back to her via the Learning Disability Partnership Board. I volunteered to be on that committee. What a farce, not only did the people on the Board ignore our surveys from the carers (that is the ones who had the time to answer our questions), the Carers CEO changed her allegience from the parents to the council. A cynical smart move from the council to effectively stifle any anarchy from the Carers charity, and in doing so scuppered any chance of help for the parents. Money buys votes!

  2. Weary Mother permalink

    There is the assessment system: where a paid stranger meets a learning disabled man or woman for 30 minutes and thumbs up or thumbs down, and allocates an entitlement or not.. decides whether they will be supported or not. Someone assessed last year having substantial needs, suddenly is cured of LD…and needs nothing support.

    Then there is the ‘change and choice’ system: In my son’s day centre four years ago a hired locum, on a very short contract surveyed all the people and decided who could stay and who should go. This ‘system’ included a short interview without an advocate. Most of the ‘interviewees’ had no clue what was going on. The change system was to provide a ‘choice’ for the recently cured…a ‘hub’ model, but what it provided in reality for many, was the park, alone, in the rain.

    The LA advocacy system where the LA buys advocates, from an ‘independent’ provider, contracted to the LA and paid for by the LA. Surely a contradiction in terms? A system where the advocates do short interventions and then go away again. Advocate to complete the LA complaints (Ombudsman?) system in a quick chat and couple of emails….(ask anyone who has trod their shoes through to the uppers on that path, far less trudged the life sapping road to Judicial Review)…..

    So, the people who were thumbs downed in the assessment system, and then thumbs down in the day care lottery, (forget personalisation and budgets) can approach the ‘independent’ advocates who then will be thumb downed in their turn… oops, sorry, in their contract…if they challenge…. far less get heavy with the LA……..

    Mark….Re LA systems and LD people with no carers………….the score is nil points….

    • Weary Mother permalink

      Sally you are so right.

      Re advocacy etc and isolated vulnerable people, with no family carers to notice them or speak for them.

      A lot of people with learning disability were encouraged, rightly, to move into ‘independent’ living spaces in the last decades. Many are now well past teenage years and without parents or family. Until a few years ago they were supported to a greater or lesser extent depending on the conscience of the LA, by directly employed carers who knew them, liked them and understood them. They often had a relationship of mutual respect. These workers had colleagues, a career …….a real job..and job satisfaction. …holidays, pension..sick pay.

      Now the without family and isolated people, if they are very lucky will get a couple of hours a week support to collect benefits etc. The support provided by an agency; a zero hours worker too commonly with no experience, and with no former knowledge of LD. They operate on the run between clients, and have little or no time to share with their agency carer peers. There are many caring and compassionate agency workers. Some are not caring or compassionate…

      The bit I missed out is that isolated (many have been down rated to having moderate needs from substantial needs and have no one to challenge this) learning disabled could not access an advocate without help,.(and agency won’t do it without contract/fee – or complain if the complaint is about their worker?)..far less understand what the advocate can do for them? In addition many have no idea that they may be being exploited by a poor or worse carer, working unsupervised, …………………., far less have the ability/confidence to complain.

      They mainly just get on with their very reduced and very neglected lives….as invisible people always on the brink of risk..

  3. Mark as carer of three people every thing you have said is the very sad truth. We cannot get a personal budget because health have given social services my daughters budget and is classed as a section 75 were as social services are paying out on a care package that is costing two hundred and fifty thousand pounds a year the care providers are making a hundred and fifty thousand profit. There is no respite in this amount and carers can’t take my daughter out anywhere we have to transport them were ever they want to go and for any appointments which appear to be all over just now. I don’t have the energy to fight any more.

    • Liz. permalink

      A quarter of a million pounds? Damned near £200,000 for ATUs? Insanity. What could those of us who know what we are doing achieve with sums much less than that? Agencies and “providers” springing up all over the place, and care just getting worse.

  4. Shirley Buckley permalink

    Mark your GP wasn’t acting under the MCA Stephen hasnt got capacity to make the decisions, so it comes under best interest and has to be recorded as such. You should remind him under the strongest terms

  5. Sally permalink

    Dear Mark, Four questions which need to be asked again and again, if only for the grim amusement in seeing the authorities twist and turn to not answer (Think: Paxman with Michael Howard)

    1. What happens to the disabled who don’t have a carer to work for them? Anybody responsible for their care legally? Do you even admit they exist?
    (Usually there’s a storm of waffle about various bods being “avaliable”/”assessible”, no comment on responsibilities-or how a solitary learning disabled person finds these helpers and presents a case to them.),

    2.Any attempt made to check if carers are able to carry out these tasks? They used to be done by employees who had employement interviews,contracts, job descriptions, supervision, legal responsibility.How have these tasks changed so that they can be handed out with no such checking? For a group so vulnerable ?

    3.How much unpaid time will a carer spend in order to set up and run Personalisation? A day? a week? Why is that time never mentioned when you sell this?

    4.Have you asked carers if they are able to devote so much unpaid time to this? If a child/young person’s say, asthma clinic closed and parents had a letter inviting them to set up financing,staffing and running another clinic unpaid, there’s be court cases. They’d be asking how you can legally justify abdicating responsibility, and demanding you compensate them for earnings lots while they do this.

    Carer’s charities: I am glad they are there, but I hate the “aren’t -you wonderful-you-poor-dears ” flim flam. Where’s the robust arguments? Why arwen’t they shouting abotu the burden personalisation puts on carers?

    Good luck twisting Hilingdon’s tail a little. Your method makes sense and saves money.

  6. Sally permalink

    Sorry abotu spelling unchecked-Easter hols means son is at my side…

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