Tag Archives: DLA


Readers, I have committed a cardinal sin.

I quote, from a DWP representative who visited me for an hour, with me being the last one on her list of six for that day:

‘she … raised both arms up to her head running her fingers through her hair.’

That is an actual ‘observation’ of what it is like to live with MS.

Funnily enough, all her comments create an image of a meeting I don’t actually recall taking part in. Apparently I was ‘dressed appropriately for the climate and was well-kempt.’

If you consider a worn and old t-shirt and jogging bottoms (minus a bra) to be well-kempt, I would seriously worry. Likewise my hair, greasy and lank, which I hide under a woolly hat most days.

My ‘memory is good’.

Yeah, I wish.

I ‘handled my ID well’ – which is strange as my mother did that for me.

My ‘speech was normal and I showed no signs of distress’. So she obviously forgot when I asked her to give me a break and stop asking me question after question after question, with the sole aim of catching me out.

Apparently I ‘visit family often’. My mother lives two streets away, my sister a few miles. I haven’t seen my sister in months and my mother visits me by taxi.

I could go on but I won’t bore you with the endless lies.

One last thing, I was ‘chatty and engaged’, with ‘full eye contact’. Which is strange as she (the Assessor) never looked directly at me once. She was so disengaged she might as well have spoken to my back wall.

I am entering the sixth month of DLA to PIP assessment.

Six months.

And according to this person, I should go through this again every three years.

If I were to write about her in a DWP report, I would say:

‘zero eye contact, rude, abrupt, uncaring, disinterested.’

Two points?

Nul points?

Tagged , , ,

I’m Hitting The Road …

cuckooThe Boss (aka Best Friend) has been a huge support throughout this whole DWP nightmare.

Every day over coffee, I bore him with the next instalment, picking over and analysing every tiny thing, such as, ‘the assessor smiled at the cat, surely that’s a good sign?’

So last week, when I was munching on a healthy carrot stick (I’m trying) during a break, he asked if I wanted to go to Switzerland. In light of what I know goes on in certain places there, I was momentarily concerned.

I ran through other possible scenarios in my mind – the mountains? The lakes? The clocks and chocolate?

None of these. Did I want to drive from Wales to Switzerland to visit … the Geneva International Motor Show?

Erm. Hmm. I like travelling. It would be amazing to get away. I don’t have to do anything, except sit there, which I’m really, really good at. He’d do all the driving, sort out the tickets, plan the route and all I’d have to do is be a back-seat driver and eat Gummi-Bears. I wouldn’t have to worry about anything for six whole days.

I’m going spare at home, fears and anxiety swirling around my mind. I wake in the wee small hours, wondering how to live on a negative income despite working, how to make four cans of baked beans last a week, whether the cat could adapt to a rice-based diet. I’m in a weird kind of limboland. Again.

The Boss could have said anything – car show, tool fair, fly fishing – and I’d have leapt at the chance, metaphorically speaking. The chance to get away from all this is too alluring to pass up. And now that The Teenager is safely ensconced and thriving at Uni, there’s nothing to hold me back.

Except MS. Comfort zone. Sofa.

However, if there is one positive thing to come out of this whole ghastly DLA/PIP reassessment process, it has made me realise just how home-bound I am and just how much I don’t do any more. From someone who used to hop on planes like they were going out of fashion, I’ve been reduced to watching the clouds pass by through my window, while I lie on the sofa scrolling through Netflix films.

I like the idea of seeing different clouds and breathing in different air. It feels like a stay of execution, but if it’s in Switzerland, maybe I can handle it at a distance.

Tagged , , , ,

16 Weeks Later …

disabledOur Government never lies.

So, when you receive an indefinite award for Disability Living Allowance, you tend to believe them, especially as MS is incurable and degenerative.

As it was for me back in 2012. The money, as stated, went towards the extra costs a disability can bring. And life went on.

We still had a lot less money than before, as my working hours had substantially reduced, but the DLA provided a cushion of sorts.

Until October last year when The Letter arrived. It was entitled, ‘Your Disability Living Allowance is ending’. So it wasn’t ‘indefinite’ after all – ‘this affects you even if your DLA has no end date’.


Imagine the uproar if people receiving the basic State Pension (by far the biggest benefit paid out – for costs associated with being older and probably not working) were suddenly reassessed:

DWP: You’ve been claiming your pension for years. Indefinitely, we say in Government Speak. Subject to change, of course.

Pensioner: Well, yeah?

DWP: Ah, you see, not all pensioners are the same. Some need more support but most need far less. So we need you to fill out a massive form, gather evidence and put yourself through a degrading assessment where we will decide on the spot whether you are deserving or not.

Pensioner: Okaaaaay?

DWP: And that automatic Winter Fuel Payment you get? You know, the one you have if you were born before 1953? Even if you’re a millionaire? Don’t worry, you get to keep that. Not worth the backlash. It’s only £550 million a year. We normally target disabled people to get some money back in to the coffers. Makes for the most sensational headlines. 

Everyone under 65 receiving DLA or PIP for MS will have MS for the rest of their lives. Yet, they are all reassessed. One-third will lose their benefit, according to latest figures. They’ve taken £6 million off us people with MS so far, and counting.

Everyone receiving the State Pension will receive the State Pension for the rest of their lives, no assessment needed. Neither are people on DLA over the age of 65 reassessed. It’s an automatic roll-over on to PIP.

I have absolutely nothing against pensioners, I’m merely using their particular demographic to highlight the gross injustices within the entire DWP system. Here’s the latest figures:

£171 billion spent on all benefits, of which;

£90 billion spent on the basic State Pension

£36.7 billion spent on disability benefits

£2-£3 billion spent on Winter Fuel allowance for all pensioners living in the UK

£550 million spent on free TV licenses for people over 75

The whole system seems somewhat arbitrary? The assumption is, when you reach pensionable age, you are due benefits, regardless of any other factors.

As for working, which most of us with disabilities try to do as long as possible, 46.5% of us still work. 10% of people with the basic State Pension still work. In fact, we are pushed in to work, no matter what our disabilities. Figures show at least 90 disabled people a month are dying after being found fit to work. Again, imagine the outrage if the demographic group was different?

My face-to-face PIP assessment took place yesterday. I had, after much consultation, filled in the huge form, adding as much information as I possibly could, a brutal and inhumane exercise in its own right. Apparently the one hour the assessor spent with me will count towards the Final Decision the DWP will make – to continue disability payment or not.

We’re told this kind of assessment forms but a small part of the DWP Final Decision. I’ve heard otherwise and I have no idea whether I ‘scored’ enough points (yep, that’s what they do, they score you).

The weird thing is, I am fighting to remain poor, to retain the same benefit between DLA and PIP. Mine is not a new claim. If it wasn’t so tragic, with the possible outcome being so life-altering, I would laugh.

Tagged , , , , ,

May You Live In Interesting Times …

cookieI always thought this was a Chinese blessing, not a curse.

I think we’re all living in, um, interesting times. From the global (will we be blown up tomorrow?) to the local (will my MS nurse understand my latest ramblings?).

I had an MS nurse-led appointment on the 3rd January and I told her everything. Which is quite unlike me; I’m usually, ‘yeah, I’m fine. Huh? MS? Oh, yeah, it’s all good.’

After the initial shock of diagnosis all those years ago, I’m savvy. Or perhaps not. I hold it all in. I consult my notebook, mention ‘significant symptoms’, ‘potential relapses’, etc and then say, ‘that was lovely, thank you very much’.

Not this time though, and I even came close to … tears. My lovely MS nurse said to me, ‘… it seems to me like this, the PIP forms, are the last straw of everything you’ve been through and all the fights you’ve had?’

Yes, yes and yes again.

Every single person, whether they are healthcare professionals or people with MS and/or other neurological disorders all say the same – if you strip someone back to what they cannot do, after years in which they have adapted and overcome obstacles, you are merely increasing the despair and anxiety of formerly positively active people.

So where does that leave me now?

In the wee small hours, I am absolutely petrified. Towards morning, I’m calmer. During the day, I laugh it off. Until it starts again. The ramifications of this single benefit, PIP, are huge.

I hate to bring politics into it, but when I’m only asking to continue working and staying on the poverty line, it would be churlish not to?

Theresa May’s ridiculous decision to call a snap-election was solved by spending over a billion on harnessing the DUP voting power.

A billion. Like *that*.

Oh, and we’re the scroungers Mrs May?

Tagged , , , ,

MS Is Curable – Just Ask the DWP

curedYes, surprisingly, MS has been cured for a third of us!

Surely we should be dancing and/or shuffling/stumbling in the street?

Well, no. MS is, and always has been, incurable. Degenerative. Progressive.

So far. Who knows what the future holds? And I pray for a cure.

Until then, we get on with our lives. Or so I thought.

We bring up our kids, we go to work, we engage in society. We may have to fight the odd unfair dismissal from work tribunal, but we still pick ourselves up and continue on. We live lives that slowly encroach upon what is ‘normal’ for our age-group. We give up stuff. We manage.

For me, one of the advantages of DLA was that I was able to access higher rates of Housing Benefit and Working Tax Credit. If I lose PIP, I will lose those also.

DLA basically pays for me to go to work. As it stands, I am already living well below the poverty line. To lose DLA will effectively render me homeless, as no-one can live on minus £75 a month, after the standard bills have been paid.

I’ve heard stories, from friends of friends, of people who don’t work as it’s not worth it. Yet we don’t all have work-place pensions or critical illness cover. For me, as long as I can, I will always choose work over the alternative. I don’t care if I earn the same or less than staying at home – work is banter, it’s real world and it’s choosing to live, as long as am I able to.

I have until Christmas Eve (lol) to send my PIP forms back, and then I think I will have a decision within 12-16 weeks.

Not a long time to plan for any alternative?

Tagged , , , ,