9/9/2016 – The Anniversary of The Start Of The New Beginning

Friday 9 September, 2016

Hello to the void! I don’t know if I still have any readers about this place but if you are indeed reading this, then I am indeed addressing you.

It’s cliché of me to say, but any perceptions of my demise have been greatly exaggerated. I actually have a half written entry on what’s been happening over the past 8 months that have prevented me from updating on the more regular basis that I was hoping for. And that will still come, but, it’s ironically also been prevented from being written updated by the same factors that have been preventing me from updating.

But anyway!

Today marks a year since my first self-hired Personal Assistant left and I couldn’t let the day go by without acknowledgement. Since I lost this PA (who I hired through a half care agency, half recruitment agency), my endeavour to hire my own PA, with myself completely at the helm, has been nothing short of a nightmare. And to be honest, the events immediately after my PA put her notice in was not all smooth sailing either. From the second I decided to have control who my Personal Assistant would be, it’s been one bad experience after another.

When my PA put her notice in and subsequently left rather suddenly – she actually put her notice in with intent to work her two weeks but because of bad health had to finish her notice on sick leave – my time frame to get a new PA went from two weeks to 0 days. She texted me first thing on the Wednesday morning, but the office didn’t even ring to tell me until 3 in the afternoon, 3 hours before I was due to have a shower call. They were meant to call me back to discuss it further, and they didn’t call me back. In fact I rung them back at half 4, done with waiting, only to be told “We finish at five, and it’s half four now….”. I was told I would have to wait until the next morning.

There was just no urgency of the matter, no sense of duty of care to help me hire someone to replace the person they suggested I hire due to her being on the books already, with very little hours. I was subsequently passed from pillar to post, I did not speak to the same person twice. I spoke to one person, they tried to offer me spare cover of whoever was available with no guarantee of consistency. I emphatically turned that offer down, I was told they would have to speak to their manager and call me back. They did actually call me back but only to offer me cover again. It was like I’d entered the twilight zone.

Then, they, unbeknownst to me, moved offices on the Tuesday. I was meant to be rung back on the Monday, and I wasn’t, so when I rung them on Tuesday morning and was met with a dead phone line, you can imagine what I was imagining! I was up the disability creek without a PA to paddle. When I eventually did get through to someone, I was told the person I’d spoken to previously had left her position (second time I’d heard that), and someone else would be put in charge of the situation, but I wouldn’t hear back from them until the end of the week at the earliest, because they were moving offices.

If I got one thing from all of these phone calls, it was that it was just an unfortunate circumstance that I would be left without care, but they were just really busy over there with their moving offices and changing job positions.

I think what happened after that really sums up my experience with Your Life, Your Way best though. After my final phone call with someone on the morning of 15th of September, 2015, I wrote a very thorough complaint letter to the managing director of the company and told them I’d decided, following that phone call, that I no longer wanted their so called services.

I was called up two days later by a member of staff trying to set me up with cover. My complaint had not only not been shared to other members of staff, it hadn’t even been read yet.

10 days after I sent my complaint, the managing director of the company emailed me back, first to apologise for my poor experience with the company, but then ended her email by stating I’d contacted her office since my email asking her to get in contact with me because I wanted to interview people, not just have cover sent to my house.

Does that message sound familiar?

After that, I decided to go at it fully on my own. I’ve talked about this before. I put up adverts, I booked a room to interview people in, I arranged interviews, people confirmed, and then came the day. I went ready and prepared, I had my best friend and my mum with me. They were going to be the Karen Brady and Nick Hewer to my Alan Sugar.

Nobody turned up.

The next set of interviews I organised, 3 out of 5 people turned up. I gave someone the latest slot I could give them because they asked for a later slot due to prior engagements, and they didn’t turn up. Following that, I had someone leave verbal abuse on my phone to someone called John. They never left their number but I recognised their voice from an applicant who never turned up.

Out of the three people who did turn up, though, I hired one person. I thought she was just perfect for the job, and I think for the first 6 weeks she was. And then something changed. I don’t know what brought it on exactly, but the first incident was her turning up late with no real explanation. Then it was a last minute cancellation where it was like a chain of knock on effects, her mum got called into work so couldn’t look after my PA’s son, so my PA requested to change days. These things happen but as someone with no priorities, I always feel like I can’t say no without sounding unreasonable. But the fact of the matter is, I choose these times and calls because they are the best time and days for me. And then I’d say the death knell was her getting another job for more money, which I understand was necessary for her, but it killed off any availability for me. I was then hurt in an accident which meant I had to rearrange calls, which was difficult because of the aforementioned lack of availability. Further late arrivals, and just had something changed in her attitude whilst she was here. I knew I had to speak to her, and her probation period was ending so the next call I had, I was going to sit her down and talk to her.

Before I even got to really play the role of the boss, she said, amicably and quite friendly, that she would have to put in her notice in, because her other job could offer her more hours, and she wouldn’t have the travel costs and it would just generally work out better. It’s understandable, and I suppose it saved me the job of having to ask her if this was a job she really wanted to keep.

The thing that sort of annoyed me on that, though, is that in the interviews I always ask how the applicants intend to travel to mine. I point out, if they take public transport, that Sundays have different time tables that might mean they can’t work Sundays after all. And around that 6 week mark, my PA started getting taxis home from my house because there was no bus home. The way it worked out she was spending her Sunday hourly wage on her taxi fair, and I look back and wonder if she resented me for it, for maybe not offering to pay for her fair for her.

Since then I have set up four more interview days in the interview room, usually arranging to interview 5 or 6 people a day, and many people have been unsuitable or just not turned up. It’s like I said last time, people were applying without reading the advert. I heard more than once that they thought they were applying for a full time job, and I just don’t know how because the advert specified, at that point, 6 hours a week, with the hours broken down into time and days of the calls.

I found two people I was happy with, and it was a hard choice between them. I have sadly regretted my wrong choice ever since. I went for listed experience over everything else, and I selected someone for a second interview – I was doing this slowly this time and not the rushed pace the social suggested. They came to my house and we chatted. I felt like we got on like a house on fire, so I  told her to think about it for a week, and to get in touch if they had more questions. A week later they came to my house to sign the employment contract. I had to print off so many things for the social to confirm I’d hired someone. I gave her a start date.

She didn’t turn up. I texted, I called, and nothing. I can’t tell you how excited i was to finally get a shower after 6 months. I was left disappointed, and confused. What had gone wrong!?

I eventually shook it off and decided to shake things up a bit, due to lack of all around availability, and I did phone interviews. It was a bit different. I couldn’t get a real picture of some of the people I interviewed and could only go on answers alone. But I found two people yet again I was happy with. I was planning to have further interviews, this time face to face at my house, much like with the last potential PA, to go through further details of the job and see if it was something they really wanted.

I called up one and arranged the details. I called up the other and…. Nothing.

Day of the second interview came for the applicant…. And they didn’t turn up either. To say I was disheartened would be putting it lightly.

It’s been 8 and a half months since my last PA left and seeing as I depend on my mum, who is disabled herself, this situation passed miserable and unbearable four months ago. Except for twice, I have only left the house with friends or for medical appointments, and those two times were quick short trips where I struggled to manage independently, but had to go out because I could not stand being indoors whilst it was gorgeous and sunny outside anymore.

There is no care agency – apart from the care agency I ditched for being unreliable, and I refuse to go back to them – in my area who will take a young disabled person unless they have either a mental health problem, a learning disability or a neurological condition. And I have none of those things. I have some sort of physical bone disorder that is something like osteoarthritis. I have to hire someone, and there’s some more applicants lined up to interview, but I am fed up going through it all – spending time and energy separating the wheat from the chaff, only to be disappointed at the end of the process.

It’s been a year since the last choice blew up in my face, how much longer will this reign of bad luck last?


Interview Etiquette: The Care Edition

Wednesday 17 February, 2016

I’m one of the many disenfranchised disabled people who’ve been left with no option but to employ a personal assistant/support worker directly through direct payments, because the care companies are not good enough or sticking to the high quality of care, including consistency, that they promise to their “clients”. The company I left the first one for was such a shambolic affair that I would suggest they change their name from “Your Life, Your Way”, to “Your Life, Every Way But Your Way, And Good Luck Hearing Back From Us Within A Week Even When It’s Urgent”. I would even organise a whip around to help pay for the name change costs.

It’s not easy going fully independent. There is paperwork, there is tax, there is insurance. There is the ever looming fact that it’s all on you if something goes wrong (Holy responsibilities, batman!), and if you’re not a confrontational person, you might find yourself wanting to dig a hole under your bed and hiding there if an issue does come up. But I was left with no choice, and I find myself, for the second time in less than 6 months, on a search for someone to employ.

I understand how the job centre works. I know because at a point in history I was subjected to Remploy’s practices, and currently have relatives under the power of Ian Duncan Smith’s misery-inducing regime. Advisers tell you to apply for all jobs, every job, or you will be sanctioned, so help you God. They tell you to ignore the stipulation for driver’s licences, levels of experience wanted, specified genders wanted, qualifications required, and sometimes they demand you apply for places you know can’t cater for your disability, all under the threat of Sanctions for non-compliance. I do understand all of that, and the job centre have to understand that it’s affecting employers as well, but alas, they don’t care in any direction.

But I do. And I, an honest understanding person, want people to be more honest and up front with independent, private household employers looking for Personal Assistant/Support Workers/Carers. I think I speak for a lot of people when I say it’s better for us to know right from the off rather than go through the motions of believing you want the job just as much as we want applicants. I’ve now had two lots of experience trying to find someone. The first time, I can’t remember how many people applied overall in the end, but on the first day of interviews, nobody turned up. Myself, my mum (of ill health herself) and my friend were in a little office for a good portion of the day, waiting for all the people who had confirmed their interview slots to turn up, and none of them turned up. The second interview day, out of 6 people who had confirmed, only 3 people turned up. I was lucky that amongst those 3, there was one great applicant worth hiring. But, over all, I was disappointed with the process on many levels. This second time, I had 9 people apply and confirm for interviews spread over two days, and only one person turned up.

So, I’m going to give people a list of What To Do/What Not To Do when you’re looking at adverts for a care job, based on experience I had with Applicants.

1) Either turn up or cancel. Don’t just not turn up, it’s rude. It waste’s people’s time and it kills any chance for a last minute offering to another person who might take the interview slot.

2) If you know you no longer want the job, even within 24 hours of the interview, let the employer know so that, again, they can try and offer the slot to someone else.

3) If you don’t actually want the job, because you’ve been made to apply for it, say so.

One applicant confirmed their slot but then needed a different time. It wasn’t possible on that first day, but I said I’d get back to them about the second interview day when I knew the time and date for it. I emailed them with the new details, and I heard nothing back. Just to double check, I gave them a call a few days later and asked if they were still interested in the job. They said they were. I said that I’d emailed them with another interview offer but heard nothing back. They said that they’d been so busy, they hadn’t had time to check their emails. I understood, because that’s happened to me too. They said yes to the time of the interview, they thanked me for calling them and letting them know about another slot, and they looked forward to meeting me.

They didn’t turn up.

4) Read the advert carefully. Also, consider what’s in the advert as well as what might be between the lines. Ask yourself if all elements are something you would be able to do. Think of the real demands of care, it’s not all shopping trips and making cups of tea.

Universal Jobmatch has a personal details safeguarding system where someone will ring you up to change the wording of your advert if you’ve put too many personal details or you’ve used exclusionary terms in your advert – They have restrictions on specifications, due to equality laws. I am not allowed to discriminate on any basis whatsoever. There are exemptions – i’m allowed to specify female carer – but there’s not many other exemptions allowed.

Sometimes the full role, the full expectations, even the times the job takes place aren’t allowed to be included, because of vulnerable adult safeguarding. And with UJ, I don’t think there’s a system that allows you to ask for more details. You, as a Jobseeker just apply and hope for an interview. Maybe you could use the email or the phone call from the potential employer to ask for more details, before an interview is confirmed and you find out there that the job is not something you can do, for whatever reason.

I’m talking about two experiences I had, and I’m trying not to get too specific, in order to save any potential hurt feelings. But basically, one experience was that I had at least two people misunderstood the advert, or misread the advert. My advert spoke about helping me, an individual disabled young adult, but both of these people assumed they’d be working as part of a team and caring for the elderly.

The other experience is that, although I’m not allowed to discriminate, people with their own mobility problems also applied and it was clear they didn’t realise how physically demanding a job it can be. I don’t need lifting and handling, but there is walking on their part, manual wheelchair pushing, steep slopes, a lot of standing up, and probably other micro-necessities that I can’t think of right now, that you really only notice when you can’t do them. I’m talking from experience of being on the other side. It’s one thing to ask someone to pass you something, it’s another thing to reach up, grip an item, hold and carry the item, pass it over… and then do that all again in reverse when they’ve read the ingredients on the back and realised they’re allergic to it.

For the most part, the lack of disabled people in work places, in various industries, lifestyles, is a lack of effort by the employers. But physically assisting a fellow physically disabled person is not one of those jobs that can really be catered for, and that is something I learnt years ago in my more mobile days, from assisting my friends less physically mobile than myself, to the detriment of my own health. It takes compromise for that to work, for both people to be happy, and quite frankly, to me it’s a compromise enough employing people to depend on. I had just had a PA from YLYW who had her own disability, and though we muddled on, it made planning things difficult. Can we get to this train station in time to get to this place or home in time? Will she be able to carry this today? If the weather’s bad, where will we go, because she can’t push manual wheelchairs up steep slopes and my electric wheelchair doesn’t do bad weather?

Selfish as it may sound, when you only have a guaranteed four hours a week to leave the house, you want to make the most of them, and you need to be sure the person with you is 100% up to the job. I’m not able to offer trial shifts, I have to go with my feelings during the interview.

6) Ask yourself if a permanent, long term care job is something you really want to go for when you know you’ll be leaving in less than a year.

This is a job with a three month probation period to work out kinks in the system and talk through any prospective problems that may pop up. It’s a job where you get to know each other, you get used to each other, and though you might not be friends (Mostly not recommended, though on one occasion it has worked out wonderfully, and not to get too sappy here, but she has kept my spirits up during this whole debacle), you will become a significant part of your employer’s life. You might leave your job at the doorway, but an employer in this capacity is a disabled person who will depend on your consistency, care, empathy and professionalism. Availability is a commodity worth it’s weight in gold, yet we all know the pay is pennies thanks to the government.

It’s understandable that you have better plans for the future, but your employer might need to depend on people for the rest of their life, and people coming in and out of their life every 6 months can be upsetting and unsettling. This isn’t a holiday job. If you’re after a temporary job, go for a temporary job or an agency job, because god knows nobody expects consistency with agencies. If not for nothing else, think of how big a pain in the arse it is to go through finding a new PA, and dealing with the lack of care package facilitated in the interim, every 6 months when their employee leaves cos the better job they had lined up, because of uni, because of whatever comes up.

7) Follow what the advert asks of you. If the advert asks for CV, apply with a CV. You’re not going to impress anyone with a request for an interview if you’ve ignored what the advert asks of you. Especially when it’s a job where you’ll be doing a lot of what the employer asks of you. You’ve basically failed test number 1.

I’ve had a few applicants say that they don’t know how to send a CV. And whilst that’s something I can believe, because not everyone is computer literate, there is an “Upload file” button right above the message block with the extra information of “Use this to send your CV”. If you really can’t upload your CV for whatever reason, you need to offer an alternative. Copy and paste it into the body of the message, or link to another site which does host your CV.

Just evading the request won’t get you anywhere with anyone who is trying to protect themselves from bad applicants, you’ve made yourself look questionable and you’ve caused yourself to blacklisted.

People wonder how so much negligence happens in care homes and care companies, and it’s because people aren’t properly vetted. Private, independent employers like me can’t do much, but faith in a CV and follow up references are one way. I think some people scoff at my over-professional tone and my fastidious nature when I go into Employer mode, but I’m not just going to give the job to someone who sends me a message in text talk promising me they’ve got the experience. Where’s the proof? It’s my health and safety in your hands, here. Give me something I can work with.

8) Ask questions and be honest. One bad piece of advice I was given before the first round of interviews was to tell the applicants what I wanted from them, under the misguided belief that if the applicant doesn’t feel up to the job, they will say so there and then and maybe end the interview early. It didn’t work, they all smiled and nodded. I could tell they just told me what I wanted to hear, what they thought would get them the job.

Think this through. You’ve just been told that hours could change, with advance notice but still, calls could be cancelled at short notice, and that you will have to call in sick if you have so much as a cold and risk losing your pay. You’ve also just been told that part of your job will be to play bodyguard when an angry parent with a buggy wants to fight to the death for the wheelchair space, but understandably your potential employer won’t let up and sit by the doors because it’s a Wheelchair space. At what point do you want to have the conversation where you say you don’t think this job’s for you after all? In the interview where it dawns on you, or, say, afterwards when they hire you? After your first week? First month? After your pay is less than it should be because you had to call in sick to save your employer from catching it and suffering from it worse?

Private, independent employers looking for PAs aren’t going to go back to the jobcentre and complain about you. Not if you actually turn up. We’re too busy trying to seift through the unsuitable applicants that we’d much rather complain about (Female applicants only means Female Applicants Only, Local area means anything north of Southport is a ridiculous distance for you to be travelling) and deal with finding new applicants when the people we had hopes for didn’t turn up. Also, I think we’re all far too decent and understanding for it. We’re suffering under the same heartless bunch of scumbags. As you’re being forced to adhere to a heartless regime, we’re having our benefits and carepackages skimmed to the minimum and waiting to be forced under the same regime ourselves.

My last piece of advice is possibly the absolute most important one. You might like to write this one down so you remember it forever.

9) Do not get your potential employer’s phone number mixed up with your ex’s, and subsequently, absolutely do not leave threatening messages on their answering machines believing you’re leaving them for your ex. Best to just not leave threatening messages to anyone at all, really.

Admittedly I can’t prove it was them because they blocked their number, but I’m a big believer in Occam’s Razor, and I’ve got great voice recognition skills.


Getting on my Soapbox – Wait, where’s the ramp?

Tuesday 8 January, 2013

There’s many things that are annoying about being disabled. There’s the actual disability, the constant need for medication, the inevitable situation of being dependent on someone when you’re quite happy to be independent, the assessments, the doctors, the hospitals, the decisions between priorities and having to defend yourself against the masses because they live in wilful ignorance…

But there’s one thing about being disabled which annoys me, and the fact that it annoys me causes inner conflict within myself.

And it’s that, because I’m disabled, I’m automatically seen as some sort of expert on all disabilities and the issues everybody with a disability must face, and so it’s been left to me to educate everybody who lacks the knowledge.

On one hand, admittedly, I do know my stuff when it comes to demanding equal rights, wheelchair access, access to social care, and how various disabilities can negatively impact someone’s life style. I might know it because i live it, but I also know it because it’s bloody common sense.

On the other hand, because it is bloody common sense, I don’t see why I should have to spell it out for everyone else when so many issues should be obvious to everyone else.

When I was in 6th Form College, I did a course about the business side of the travel and tourism industry. It was always expected of me to bring up the disabled access and equal rights issue. Nobody else ever thought of it, nobody else gave it much attention. If the subject was brought to the table, everyone else would go “of course there should be disabled access” and never go into the specifics. Some people would even say “It’s a shame there’s no disabled access, but they can’t expect it everywhere…”

There are so many disabled people who turn into advocates for disabled rights. Most of us disabled people know that it’s because if we don’t do it, nobody else will. They’ll try, but they get things wrong.

I’ll give you a couple of examples.

At one of the local hospitals I attend, they had new wheelchair accessible bathrooms put in, because the old wheelchair accessible bathrooms didn’t have much room in them, making them rather pointless. They had two phases of assessment: One person going through all the common demands of access and declaring them reasonable, and then another person assessing the access from the view point as someone in a wheelchair.

Here’s why that didn’t work:

The first person looked at the bathrooms from a carer’s point of view:

Can I help the person in the wheelchair into the bathroom?

Can they safely sit on the toilet?

Can I help them safely get back into their wheelchairs?

Is there enough room for us both to wash our hands?

Are any of the bins/sink/dispensers in the way?

The second person, who was able bodied (The old “We got someone to go around in a wheelchair” palava) saw it from the view point of a perfectly able bodied person being helped by a carer, rather than someone with a disability. There is a distinction, there’s a very big difference and these aren’t taken into account properly.

The second example is frustrating. I’ll give you anecdotal evidence:

When I was trying to travel and needed a hotel, I had to ask every hotel and Bed and Breakfast about access, and most of them would say say “We’ve got good access, yeah!” which would be great if it was as easy as that. If you are ever travelling with a disabled person, or you’re disabled yourself, never take them at their face value. Always go into the specifics of what you might need and see if what they have will be good enough.

One place that was in the best location for the journey went on to say, “Yeah, we’ve got a two bed room downstairs and a wheelchair accessible bathroom. There’s a couple of steps outside, and the doorways are narrow, but we had one of the employees go around in a wheelchair, and he didn’t have no problems!” or words to that affect.”

I asked some more questions, and from what I can remember, the accessible bathroom was little more than a toilet with a lever-grip bar,  a low level sink, and for a shower, you could ask at reception for the shower stool. It didn’t sound wide enough for both a disabled person and their carer, nor did it sound wide enough for a wheelchair to fit, so I’m not exactly sure how they expected a disabled person, independent or not, be able to actually get in the shower. And shower stools are hit and miss when it comes to safety in the shower, as there are various shower stools and it depend’s on the range of mobility on if they’re a help or a dangerous hindrence.

Some people don’t have carers, because they don’t need carers. (I used to be one of these people.) Some people have complex disorders that affect range of mobility, grip and space perception, but still don’t need carers.

For someone with those kind of conditions, taking away the option to be independent is more disabling than the disability itself. Because it assumes a carer will be there to do all the hard work, when the disabled person would be able to do it all for themselves.

But this is derailing, and yet at the same time precisely my point.

As a disabled person, I just want to be a person who coincidentally has a disability. I don’t want to be looked upon as some sort of teaching disciple, telling everyone how wrong they are when it comes to these issues. Mainly because it’s a stereotype I don’t want to conform to, partly because even I might get it wrong. I am just one disabled person with one type of rare condition. What might be accessible or inaccessible to me might not be all that reasonable or unreasonable to others with different types of disabilities, conditions and impairments.

But, like I said, I’ve often found that if we don’t speak up and point out the problems, nobody else will.

I think the latest thing that got my goat, which is fairly obvious and common sense living with a disability, is hospital appointments and the need for a carer. I’m alright, I have my family, but it was a very real possibility some time last year that I’d need a carer assistant to go with me to my hospital appointments.

I asked the social services about that, and they said that the only way to gaurantee a carer on days of hospital appointments, would be to get assessed as needing a carer on a daily basis, and then cancelling the days where I don’t have hospital appointments.

It was all either/or, and no way to call up, say a week before the appointment, and ask whether I could have an extra call for this one off appointment. Now I have many hospital appointments, and a direct payment system, so not only does that system not sound too barmy, but also options have opened up a bit. But there’d still be the issue of accessing more money from social services to cover the call. Social care and home help isn’t cheap, after all.

But it just kind of baffled me. Why so black and white? There must be other people who only need a carer on a “as demanded” basis, rather than either scheduled time limited calls, or a full time carer.

Maybe there are, maybe they went to Direct Payments ages ago, and employed a PA directly for those very reasons. This could very well be another one of those things that they overlook due to their main demographic of clients and service users.

Which brings my point back around, really. People concentrate so often on issues disabled people face, from the outside view of not being disabled, or not having that particular disability. They often tell us what we need and what we want, and they don’t listen to common sense.

Which is why, begrudgingly, we need advocates and spokespeople to tell them they’re wrong.

And out of all the disabled loud mouths I know, I appear to be perfect for the job.

(Because I’m the only disabled loud mouth that I know personally…)


Who are the April Fools? All Care, Mears or The Government?

Tuesday 3 April, 2012

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.