Category Archives: Emotions

This Is What An ‘Unskilled Care Job’ Looks Like

Since the Conservative Party Conference began, you will hear ‘care work’ written off as ‘unskilled’.

And, ‘how will we fill these unskilled care posts after Brexit?’

Time and time again, over and over, on every news channel.

Why do I believe it’s not an unskilled job? And why I am so angry with this term being bandied around?

Because I was a care-worker, I did that ‘unskilled’ work and it was the hardest job of my life.

Sure, I stepped on the ‘bottom rung’ in the Care Sector, with my ultimate plan being to train as a social worker. But I believed it was intrinsic to learn at grassroots, if I was ever going to become an effective manager.

So, here’s a little insight into this so-called ‘unskilled job’:

You are on a zero-hours contract with no time paid for travel between customers. So, you can work a 12 hour day and be paid for 4.

You have no idea what situation you will encounter at each job, whether it’s a 97 year old woman screaming at you to leave her alone, but it’s on your notes that you must shower and dress her, despite her bones being in danger of snapping. Or whether the next customer has severe dementia, is living in squalor and you have to step over dog mess in every area of the house.

We washed women dying of cancer, trying to give them a little dignity back. We changed pads on proud men, shying away from us through sheer embarrassment, all the while reassuring them that everything was ok.

We encountered hostile relatives, violence and rudeness. We were yelled at, shoved, pushed around and still had to pull on reserves of patience and kindness.

We came in at the end of life, mostly, with all its indignities, yet we bathed, administered medication, washed, dressed and fed people who needed us. We built relationships with no training. How do you learn to talk about death, sickness, infirmity and all the rest that we endured?

But we did. We forged friendships, saw some of the customers every day, chatted about this and that and learned what they liked and didn’t like. We sorted through their mounds of medication, diligently noting what they took and what they refused. Unskilled?

We saw death, uncaring relatives, abusive relatives, heart-wrenching loneliness. Every time we closed the door on a customer, a little part of us died. That fifteen minute ‘Med Call’ was the only human contact they had. Interesting. That fifteen minute call is also one of the most lucrative for the care company. But what can you do in that time?

Not only that, to work for fifteen minutes, earn perhaps, £2, then travel across peak traffic (unpaid travel time), maybe seven miles to your next call, and you can see the problem.

It’s called unskilled because it needs people living in poverty to apply.

Who else would put up with such conditions? And who else cares enough to organise seismic change in this rotten, cruel sector?

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Write On …

I’ve been in a bit of a tussle recently, and not only with Phyllis, the Ever-Expanding-Hernia.

My blog was born in October 2012, a dreadful time for me.

Not only was I coming to terms with a diagnosis of MS, my first Alemtuzumab treatment and a Teenager in High School, I was also being horrifically bullied in work.

I desperately needed an outlet and I had always, always wanted to write.

I reached out to the fantastic author M J Hyland (who had written a beautiful piece describing the darkness around learning to live with MS in an Observer ‘Review’ piece), and who, through many emails, urged me to find a way to get everything down, document it all.

I took her advice and my blog went live; I typed away every single day, posting blog after blog after blog.

My writing was simple, direct and to the point. I wrote about me, The Teenager and The Boss, who employed me as soon as I was sacked for having MS.

I blogged what I saw, what I experienced and what I was going through, warts and all. My aim was to show MS as it really was for me. As the only adult in a house, life with MS was frightening, terrible and daunting in equal measure.

Six years on, I’m still blogging, but in that time, and thanks to a huge amount of encouragement from you guys, I completed my Masters in Creative Writing. And The Teenager is in University.

For my Master’s dissertation, I wrote an angry piece about the realities of care work (having worked in that dismal sector) a brutal and unflinching novella laying bare the real-life experiences of ‘social care’.

Reader, I won that year’s Humanities Prize for Academic Excellence.

I took a break for a year or so. I uhhhhmed and ahhhed about taking it further. I liked my job – I enjoy it, and need the flexibility of working with my best friend, but something was nagging away.

Could I go further? The next step was a PhD. Lol.

Hmm. Lol.

Nope. I’m not a natural academic.

I don’t write academically. So, in short, no.

I had an interview recently, to teach a ten week course in Digital Media, and the first thing I told the interviewers was that I wasn’t academic. Needless to say, I didn’t get the job. But my passion was there.

I had the most incredible feedback two days later. Sure, I was let down on the technical side of the course, but one of the points was my claim that I wasn’t academic.

So, what is academia? Is it ivory towers? Yep, that’s what I thought. Convoluted arguments? Yep. Long stripy scarves and a pile of books? Yep.

Well, no. Not always.

I’m going for it, despite my ingrained fears that I’m just not clever enough. I don’t have the right vocabulary, I can’t write paragraph-long sentences and I have no idea how to conduct myself in a tutorial.

I’ll still have to work, still run the house, be available for all The Teenager’s Uni dramas. And still cope with everything MS flings at me.

It might take a while. Perhaps a lot longer than my goal.

And for me, the great thing is, I’ll need your support throughout it – and not only that, I want you to contribute to my studies.

My dissertation will put you at the centre. The more I think about it, the more excited I get – it will be a collaborative effort.

How does that sound? Let me know …

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Never Knowingly Alone …

My wonderful friend Caroline took me and Phyllis the Hernia to hospital today.

Long story short, we’ll part ways very soon (Phyllis, not Caroline).

Anyway, before the appointment and after the obligatory trip to ‘Tiger’ in the hospital concourse, we sat with our coffees amongst the benches and abandoned sandwich wrappers and it hit me, full-on.

I’d been thinking about it for a while, but here it was highlighted: I never (very rarely) go out alone.

Caroline has been with me to so many MS appointments, MRI scans, endocrinology appointments, overnight stays with Alemtuzumab. She takes me to cafes, charity shops (I love a good rummage), exhibitions. You name it, she takes me.

And my long-suffering Boss/Friend – he picks me up for work, drops me off, takes me on long car trips, to Austria and Switzerland, where all I have to do is learn a few more foreign phrases and watch out for lane switches.

I can’t remember the last time I went to town on my own, despite a bus-stop being right outside my house.

Me and Caroline talked about it – I mentioned fatigue, foot-drop, balance. I might not hold on to her arm, but having her at my side means I have support and more importantly, an ally if something stupid happens (whoops, there I go again).

When did this happen?

I’d average that I spend around 75% of my time, at home, alone. Home is familiar, I know every ‘grab post’, every swerve, corner and dodgy step. I can pinball quite happily on my own. Perhaps a bit too happily.

In short, I just don’t go out alone, and how awful is that? Why didn’t I see this coming? I used to stride confidently, everywhere. Now I’m hesitant and I look down, not up, missing out on so many things.

Ever resourceful, Caroline has challenged me to get the bus and meet her in town. It’s a first step?

Inside, I am panicking, planning, worrying. I’m too happy at home and too comfortable with my two closest friends.

Perhaps it’s about time I took a (foot-drop) into the unknown?

Glossing Over The Cracks

In the spirit of Bank Holiday DIY-not, here’s a little list explaining how what I say covers up a whole different, hidden life:

  • ‘Yeah, just a bit tired’ – I will simply wither and die if I do not immediately find somewhere, anywhere, to lie down and sleep.
  • ‘I had a really good day yesterday’ – I got through it.
  • ‘Oh, me? Loads of plans for the weekend’ – Sleep, sit on sofa, have a little think. Sleep some more.
  • ‘Your amazing meal at that great new restaurant sounds fabulous – wish I could have come with you guys, but I had a lovely meal at home’ – heated up some microwave rice, ate from packet.
  • ‘What, these? Oh, I bruise easily’ – you should see the walls.
  • ‘Whoops, butter-fingers’ – please excuse me dropping my coffee/juice/water all over your trousers.
  • ‘Wow, I can fly’ – pesky foot-drop.
  • ‘Awww, I’d love to, but I can’t’ – pretty much everything.

I could go on. And on, but I won’t bore you.

It surprises me how much I gloss over serious symptoms that impact my life at every turn.

But, ‘tomorrow is another day’.

Or, let’s see what MS throws at it?

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12 Minutes …

For many of us going through the DLA to PIP process, it’s a devastating slide into everything we never wanted to face.

What can’t you do. And why?

After years of muddling through, re-adapting, making concessions for MS, we have to admit our endless ‘shortcomings’. Our failings.

We realise, sometimes with a huge thud, just what we can’t do. I plunged into a deep depression, because I actually thought I was doing ok, bar walking into walls and falling asleep at the slightest opportunity.

My forms took weeks to fill in. Painstaking. Personal, hideously personal. Numerous extra pages of ‘Cont. Info’ were included.

48 pages in all. Basically, my entire life in one document.

As a birthday present last week, a huge pile of tribunal papers arrived along with cards and flowers. Nice touch.

Buried in amongst over a hundred pages, I discovered that my form had a ‘considered/writing up time’ of 12 minutes.

I don’t know about you, but that’s pretty impressive. To read a compressed life with MS, all 48 pages, plus consider them and write a response in 12 minutes is speedy by anyone’s standard. Bearing in mind it’s not a new claim, but a transition from a lifetime award for DLA.

The result?

A face-to-face consideration was required. Which happened – apparently – although neither me nor my witness recognise the meeting she refers to. And this ‘health care professional’ appears to have the upper hand in my forthcoming tribunal.

Her ‘evidence’ is the ‘truth’. She was here, in my house, for 50 minutes in total. That includes losing her way (my mum directed her on the phone), coming in, setting up her laptop, talking to me (without looking at me), packing up and leaving.

It appears my entire tribunal rests upon her ‘clinical’ finding and ‘observations’.

I’m impressed.

To destroy someone’s life in 50 minutes is bad enough, but the lead-in took 12.

I am that insignificant. All my pain, my symptoms, my life being turned on its head. Not only that, the end of my planned future, being sacked from work, the endless relapses, the invasive treatments I’ve had. Not to mention their side-effects (hello, Fatty-Puff-Me).

As if that wasn’t bad enough, the person who knows me and my MS probably better than most, my wonderful MS nurse, cannot write a statement for the tribunal. Aside from the logistical nightmare that this would cause for the under-funded department, they have been ‘told’ by the DWP that their evidence is ‘meaningless’ and ‘patient-directed’ so therefore inadmissible.

So I face a tribunal based almost solely upon evidence of someone who does not know me, triggered by someone in an office who does not know me.

Ok.

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