I’m probably ruining the Anonymity I’d built for myself over the past Year and a Half on here by writing all of this. I’m also breaking my hiatus, but it’s important on both accounts.
As I’ve mentioned a few times, I have a disability that in the last two years has caused a large decline in my mobility. I came out of surgery twice a little bit worse off than before I went in. I use a manual wheelchair even though I can’t self propel, I can’t bend over or down, I can’t crouch, kneeling is now impossible. I can’t put my own shoes and socks on, I have difficulty getting dressed by myself everyday. If I was left to my own devices, I’d manage minimally for a few days and then it would be all too much and I’d be stuck bed bound for a week, in pain.
Having my mum as my carer lets me keep a nice middle line. I can do as much as I can for myself, because I have some one helping me do it. It’s a weird strategy, I know. Not everyone seems to understand it. They never did at school, that’s for sure. But that’s a limp down memory lane I’ll save for another day. Maybe.
Anyway, My mum takes care of me, which helps me take care of myself. But she can’t always do everything, though. She has her own disabilities and ever-lasting bouts of ill-health. Which is where, in my specific case, a care company comes in.
I need someone to help me get in and out of the shower safely, and help me get undressed and then dressed again. My mum could maybe manage it once a week, every 10 days. Any sooner than that and it was too soon for her to help me again. I tend to have appointments of some sort at least once a week, she has her own appointments too, and she gets tired more than me. Because she does the hard work. She is not up to helping me get a shower every so many days.
It’s not life or death, I know. And I understand there are many people out there going through the current predicament who are much worse off than I am. In their case, it could very well mean life or death.
And what is the current predicament? Well, it is as follows.
Just after the new year, the local care company that I’m with, All Care, lost it’s contract with the local council. The letters that were sent out informed All Care’s clients, rather half-arsedly I must say, about this and that we, the clients, would automatically be passed over to the new care company, Mears, come the first of April, unless we wanted to set up a Direct Payment Scheme.
The letter didn’t explain what a Direct Payment Scheme was, just implied it was a very messy and awkward thing to set up just to be able to stay with our current care providers. The letter also tried to assure the clients by saying words to the effect of “You will still see your usual carers”. Well, I picked at that straight away. because Mears is a completely different company. They weren’t merging, and one company wasn’t diluting to be the underlings of the other. They were remaining their own separate companies, with their own separate employees unless those employees wanted to move over.
From what I know of most of the carers that I’ve spoken to, most of them knew about as much as us clients as to their jobs, and most of them said that they would stay working with All Care as long as the position was there for them.
To cut a very long story short, I did everything I could personally do in my power between the social services and All Care to remain a client of All Care. I’m not alone in this attempt.
Mears rubbed me the wrong way as soon as I received their first letter, as it just assumed I’d be a client of theirs. Once again, the implication of setting up a Direct Payment to stay with All Care was a long and messy faff about, was thick amongst the tone of superiority.
I got a letter a week ago that said, “Unfortunately, due to exceeding demands for Direct Payments, not all requests were able to be processed in time. On the first of April, your care will be provided by Mears until Direct Payments could be set up.”
Now, I have three problems with this:
1) If the demand has exceeded expectations, then they should have met the excess requests with more man power
2) The fault lies solely on the shoulders of those in charge, yet it is me and other clients that are, for lack of a more general across the board term, suffering for it. We have our reasons for wanting to stay with our current care providers, yet some bigwig in an office is steam rolling over that.
3) All Care share some of the blame.
I’m not biased. I am willing to point the faults at whoever is at fault. All Care said that, from their end, they have a list of Clients whose care will not be affected by the change over, because the requests for Direct Payments have gone through. And then I found out a week before the First of April that it hadn’t.
I spent the whole of last week waking up to letters and phone calls trying to make sense of what was going on. I had Mears saying that unless I agreed to a care plan with them, my care package would be taken away and I would have to apply for one again via a social worker, like how I did when I was in hospital.
I had conversations with Adult Social Services that went like this:
Me: “I’m not happy about this.”
Them: “That’s not really my department. I can leave a message with whose department it is and they’ll get back to you.”
Followed by someone calling me up to tell me that they received the message. Then telling me it wasn’t their department and to call Department Number One again. Which is where I lost my temper, and my voice along with it. I mentioned what Mears said and they said they’d call me back.
Mears called me back and backtracked and told me that they Didn’t tell me my care package would be taken away, they were just concerned about me not getting care provided come the first of April.
I threw the words Harassed and Bullied at them and they said they wouldn’t be calling again. I got a letter in the post the next day saying that my care package would start on the first of April.
I had a few discussions with the owner of All Care too, and despite his assurance that I, along with others, would still receive care from them regardless, I got a letter the following day saying that come the first of April, my care would be provided by Mears. It’s out of their hands.
Well, I knew then that come Sunday, when a Carer was meant to turn up, nobody would be turning up. And that’s exactly what happened. My stupidity to blame for complete trust in one company? No. Because this mess could have all been sorted with some logical actions. But Logical Actions seemingly fell on deaf ears.
The most logical thing to have done, of course, would have been to have delayed the starting date of when the new care companies were to be taking over until all requests for Direct Payments had gone through and had been set up. That would have made everybody happy, instead of this big mess that has left almost everybody unhappy.
The worst thing about all this? It’s that we, the clients, were the ones who had to pass messages back and forth to make sure both sides were kept up to date on what was happening, and get information on what we needed to do next. Now, I have my wits about me and my head is firmly in place, hence why I was planning at one point to be a Journalist. But I’m not the average client of a care company. I am in the minority with my age, level of care I receive, and my mental awareness.
There are many, many elderly people who are dealing with the same thing. Some of their clients are people with varying degrees of dementia, they’ve had strokes, they rely on their relatives to keep these sort of affairs straight. They are unfit to deal with the complexity of this issue. It wouldn’t surprise me if some of them did say yes to Mears just to get it all over with.
If they’ve had the 10 days of hell I’ve had, then I hope members of the council and government wake up feeling very, very ashamed of themselves.
Even now I’m left feeling clueless and a little bit helpless. I was meant to call up the local MPs office today to put my name down on a list (A belated Petition, maybe?), as well as call back All Care and someone from the Adult Social Services. But, as a disabled person needs to do every now and again, I spent my whole morning in hospital seeing my specialist, and then spent two hours travelling back home. Then I suffered a migraine and that was me done for the day.
Whilst at the hospital, I received yet another letter from Adult Social Services, telling me to be assured that they’re doing all they can to transfer my care package to the new care company on the First of April. This was followed by the friendly information that, should I have any question or concerns, they will have offices open on the First of April that I could call. The First of April being a Sunday, the day before I received the letter.
It’s at this point I realized that Sunday was also April Fool’s Day. I usually have a good idea of what Cruel Irony is, but I’m not sure whether it is in this case or not.
Alas, if this was only one big elaborate April Fools Joke. Then it might all make sense.
Anyway. I also got a phone call from the very same department who tried to pass me onto another department, to talk Direct Payments, and I will have to call them tomorrow. Because this is a fine mess I seem to be involved in and the sooner it can be sorted the better.
One on hand, I wish I had have transferred over to Mears because then I wouldn’t have to put up with this constant headache and stream of letters that either all say the same thing, or contradict each other. But on the other hand, the council need to learn that they are dealing with people. People who have wishes and concerns and actual conditions that they’re no doubt making worse just for the sake of a few pence. If they just start making decisions that we all go along with because they’re the ones with money, then we will be taking a good step back in time where the disabled, elderly and the infirm are told what’s best for them.
I am disabled and I am an adult. I make my own decisions and I think I know what’s best for me. In the event that I can’t make decisions for myself, I trust my family and friends to do what’s right by me as I would do for myself. The government cost-cutting scheme and the council actually have very little to do with that part.
We don’t want to go down that slippery slope.
And if in the long run that leaves me weeks without a carer coming in to help me, well then I’ll deal with it. I’ve dealt with worse, and I’ll know who truly will be to blame for that.