Research Request – Can You Help?

I’ve been approached by Jowinn Chew, a first year PhD student at King’s College London, based at Guy’s Hospital, supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.

Their research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS.

They need you guys to help them out, so it would be great if you could take a little time out to get involved.

Jowinn explains what will be involved in the task:

You will be responding to statements concerning general thinking patterns and mood.

Following this, you will then move onto the main task, where you will read through a series of twelve short descriptions. Afterwards, you will then be presented with several sentences. You will be asked to rate how similar the sentences are to the original scenario.

We expect that the task will take approximately up to 40 minutes to complete.

If you’re interested, click here! And, thank you.

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It Takes A Village …

MS is hard enough on your own body and soul, but witnessing your child coming to terms with it in a parent is heart-wrenching.

Up until he entered High School, me and The Teenager did a whole lot of things together; I was forever picking up leaflets, magazines, nabbing numbers and ideas from flyers.

We fought dinosaurs, made shields in a castle and painted pottery.

I sewed badges on swim bags, then faithfully unpicked and re-sewed them on to new bags. I bought uniforms, day trips and packed the lunches.

I stood at the rugby sidelines weekend after weekend, freezing cold, following him to tournaments miles away, in the rain, without ever mastering the rules of the game. I picked him up after injuries and faced the long journey home, but with a medal or mini-cup clasped in his hands as he fell asleep in the back seat.

I’m so glad I had that time as everything was set to change.

Just as he put on his brand-new High School uniform, MS hit. His once-active parent was more often than not going through relapse after relapse.

We factored in three Alemtuzumab treatments to coincide with his summer holidays – after coming home with no immune system, I had less than two days each time to be back to ‘normal’ after he spent time with his father.

It takes at least a month to recover an immune system.

The Teenager saw a lot and he didn’t like it – the enforced sleep, the early bedtimes of his main parent, when I should have been the one getting him to sleep.

The utter fatigue and lack of immune system floored me. Luckily, kind parents filled in a lot of gaps, taking him to rugby, standing in on Parent’s Evening, inviting him along to sun-drenched trips to the beach.

But I cried; it should have been me. Yet I was so tired, I couldn’t get my head around it. Instead, I tried to ‘stay present’. If I could not move from the sofa, I would at least try to remember everything that was going on.

And now we have The Teenager at University, having the absolute time of his life.

It’s not just thanks to me, it’s thanks to friends and family, everyone who has ever followed him on my blog, or who has met him in real life and chatted with him like old friends, and to everyone who has ever made him feel that he is not alone.

Significant people may be absent from his life, but he knows that he has a whole support network to call upon.

Watching him at an MS filming session last weekend, I was stunned to hear him speak so coherently and poignantly about his experiences and as soon as I can, I will share it with you.

In 2012, all I asked for was to be well enough to see my son off to University. I firmly believe that thanks to everyone here, he made it.

I certainly didn’t do it on my own.

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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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Impatiently Recuperating

So, Phyllis the Hernia is no longer.

Two weeks on, the stitches are healing.

I can see my feet once more. I’m bruised, but happy.

It’s weird though, having this operation is a bit like being diagnosed with MS.

You certainly find out who your friends are.

Not many, but a few of the people I thought would send good wishes, if not come for a visit, haven’t. My other amazing friends, thankfully, have.

I’ve been lucky, I’ve had offers of help, visits, someone to put my bins out on time. Although raddled with Cabin Fever, I’ve had visits every day, bringing me news of the Outside World and a supply of blueberries (my must-have).

Yet being alone for the majority of the time has been interesting. I’ve set up a study schedule. I’ve replied to all my emails. I’ve ordered some covers for my garden furniture. I’ve watched every single episode of ’90 Day Fiance’. If nothing else, I now know how to apply for a visa if an American guy ever took a shining to me.

I’ve tootled around my cottage, counting cobwebs. I’ve snipped dead leaves from plants, sorted through kitchen drawers and, well, been a little bit bored.

I know I need to take it easy, but it’s a bit frustrating.

Perhaps I was a bit hasty in turning down appearing in TLC’s ‘Too Ugly For Love?’

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Judge, Jury and Executioner?

The day I got back home from my hernia operation, I received a letter from the Tribunal Service.

Probably the best ‘dreaded brown envelope’ I’ve ever had.

Without my knowledge, a PIP Appeals Hearing had been held in my absence and to cut a long story short, I won the case. And so ends 11 months of diabolical stress.

This would not have happened without the support of Stuart and Marie Nixon, and my MP, Anna McMorrin.

A reader of my blog put me in touch with Anna and she took up my case, expediting it through the system.

However, I could not obtain crucial evidence from my MS nurse, as the DWP had told them it would be disregarded. I have since found out GP’s and MP’s themselves are also being told that their evidence will be similarly disregarded.

This goes completely against the DWP’s own published guidelines:

From the DWP’s own PIP guidance booklet

Sending in additional supporting evidence

We want to use the widest range of evidence when we assess PIP claims to
ensure awards are made correctly and claimants are paid promptly.
It is very important that claimants provide us with any relevant evidence or
information they already have that explains how their condition affects them.

Information that will help us to assess a PIP claim
Reports about the claimant from:
• specialist nurses
• community psychiatric nurses
• social workers
• occupational therapists
• GPs
• hospital doctors
• physiotherapists
• support worker

Not only that, the DWP has admitted that Capita PIP assessors do not need expertise in medical conditions they assess.

So let me get this straight. We cannot submit medical evidence from those who know us best. And then they send us an assessor who has no real knowledge of our condition.

I call this out as blatant discrimination. It’s a guaranteed no-win situation.

Although my case has been resolved, this does not end here.

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