Tag Archives: PIP

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’.

Right.

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.

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PIP PIP HURRAH …

pipWell, the forms are in and the date’s been set for my face-to-face PIP assessment.

Do I spend the next couple of weeks fretting and worrying?

I did that yesterday and ended up a nervous wreck, my brain fit to explode. I can’t live this way and I’m not ready to give up, not just yet.

My MS is my MS. No one knows it better than me and only I know what it’s taken from me and what it continues to take, bit by bit, like some insatiable beast.

In the back of my mind, there is always that alternative; give in, give up. Admit defeat. Believe me, I’ve been close far too many times to count. It whispers in my ear. I’m there right now, teetering on the edge.

Everyone with MS knows that we just have to take each day as it comes. You can go to bed one evening, congratulating yourself for a ‘good-ish’ day (which to anyone else, would be pretty dire) and be on the floor (literally) the next. We take nothing for granted.

PIP is nothing to celebrate; the title of this blog is of course heavily ironic. MS is still incurable. I still spend far too many days alone at home, pinned down by endless symptoms. My life has shrunk to a fraction of its former size. Will I be able to convey this? I truly hope so.

Anyone going through this PIP exercise is aware that you have to focus entirely on what you cannot do, and for some of us, this is a brutal and cruel wake-up call. Over the years we adapt and accommodate each limitation, perhaps not noticing until all those limitations builds up to a traumatic picture of loss. In some cases, like mine, MS appears overnight with a massive relapse, affecting speech, balance and cognitive functions all in one devastating blow.

I had no time to adapt back then and the change was instant, with every area of my life affected – bye-bye job, bye-bye partner. In short, I am battle-scarred, and this is yet another battle.

I am scared. There, I’ve said it.

Actually, I am terrified. The stakes are pretty high and I am trying to block out what could happen. So, to end on a positive note, in other news:

  • The Cat seems to be cured of her flea-bite allergy. Yay. She has also overcome her resistance to a basket I bought her in a ‘Pets At Home’ online sale. After ignoring it for weeks, deliberately sleeping right next to it, she is now in it, and loving it.
  • The Teenager has popped home a few times to use my washing machine and play loud music. I have ear plugs, it’s fine.
  • The Boss brought over two huge boxes of chocolates last week, when I was off work and feeling poorly.

And there was me hoping to report an astounding weight loss …

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We Can See You

rsvpAs it happened, the ‘dreaded PIP brown envelope’ never arrived.

It was white, innocuous, mixed in with pizza and conservatory leaflets, but I immediately knew what it was.

The DWP has invited itself to my house in less than two weeks, despite me not requesting a home visit. How … lovely.

At the appointed hour, they will assess whether I do indeed have an incurable, degenerative illness. With this hour-long meeting, they will decide my future – should I be allowed to continue to live and work in genteel poverty or should I be rendered unable to pay my bills and therefore become homeless?

I knew an assessment was coming, I just wasn’t prepared for it to be at home.

My house is my sanctuary and comfort, from everything. Every single item I have here is precious and the last thing I want is some hawk-eyed official casting their penetrating gaze over … my life?

To be honest, it will feel like an utter invasion. The last person I had here in a professional capacity was my lovely MS nurse, back in 2012, and I welcomed her in with open arms. An as-yet unnamed official (they discard such niceties when you’re ‘claiming benefits’), will be uncomfortable and invasive to say the least.

And that’s what it feels like – an intrusion into my personal space. Is there anywhere they won’t go? I have described, in excruciatingly personal detail, every area of my life. Things I wouldn’t tell my closest friends. Things I can barely come to terms with myself. Every tiny little detail of every single thing I cannot do. Or do, without wanting to.

Back in 2011, I could not know that embarking upon the MS diagnosis-journey would mean baring my soul, my brain and to top it all, my entire life. And that’s without the relapses, the gruelling treatment, its side-effects and the ongoing symptoms and medication.

Yet I have no choice. My quiet, unassuming, boring life could be ended in an instant.

And I quite like my unassuming, boring life.

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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?

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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?

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