Tag Archives: DWP

Appealing for sanity?

Well.

I have now, at the last minute, submitted my appeal to Her Majesty’s Courts.

Stuff just got serious.

I got turned down at the Mandatory Reconsideration stage, due in large part to some person coming to my house and writing fiction/ticking off a list about me.

There were lies and then there were the downright lies. It’s one thing to assess my MS in less than 40 minutes (which is bizarre and actually completely impossible), it was another thing to doubt my witness.

So we are both wrong. And probably lying. As it happens, I am going through a particularly difficult MS flare up – not new, happens every couple of months or so (as reported).

Redial back, and after my Mandatory Reconsideration notice, I was willing (if I had the energy) to throw in the towel.

They didn’t believe me.

I had Alemtuzumab treatment, the strongest licensed treatment, at present, for MS. Three times, when we usually have two and that’s enough.

Each course costs at least £30,000.

I have a rapidly-evolving type of MS, hence the aggressive and brutal treatment. Basically, it removes your immune system. Easy?

Not really. Not at all.

And now, in amongst a further MRI to assess my MS, I am awaiting my day in court. And there was me thinking MS was brutal.

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Nolite Te Bastardes Carborundorum

To appeal or not to appeal?

That is the question.

I am tired. Utterly exhausted.

I first got the DLA to PIP forms back in October last year. We’ll soon be in July, and my Mandatory Reconsideration request was turned down, as expected. Over 80% are.

We’re talking almost ten months, to complete one ‘award’. And I’ll be reviewed again in three years.

After their initial assessment, I have been awarded the daily living needs, standard rate. In turn, this allows me to access the disability rates of both Working Tax Credit and Housing Benefit.

If I go to an appeal, there is every chance that could be reduced, and I would lose that access to the other benefits. And then I would be facing homelessness. Despite working.

It’s a gamble, and a huge one.

There’s two ways of thinking. The first, outlined above: take what I’ve been given, live with it and wait to be reassessed in three years, when no doubt my MS will be worse and at the very least I’ll have a ‘proper’ mental health diagnosis. Which annoys me as I’ve been proactive by seeing a counsellor for years, yet to the DWP, it is meaningless.

The second way is to apply for an appeal and hope that the panel will understand the intrinsic and very complicated nature of MS.

The new 20 metre rule makes matters even more difficult. It used to be 50 metres and it’s a cause being championed by the MS Society right now.

I would invite anyone from the DWP to my house from around 2pm onwards, to witness my struggles. The evenings I don’t cook. The evenings I spend lying on the sofa. The evenings when the nerve pain is beyond comprehension, despite being on 600mg of nerve pain medication a day, the highest sanctioned for MS. Where to go from here?

For me, the sticking point is the lies. Fair play, if the assessor saw me on a ‘good day’, I could understand her comments, which have been faithfully regurgitated by the person looking in to my Mandatory Reconsideration (who hasn’t met me). She didn’t.

It galls, a government department, coming in to my house, sitting with me and a witness, then writing absolute lies – in fact, it is seriously messing with my mind. I was there. I know what happened.

So here I am, not knowing quite which way to go. Stay safe, yet insulted. Or fighting my corner, with every chance I could lose my house of the last 14 years.

I work. I’ve raised a teenager on my own since he was a baby and now he is in University. And I’m dealing with MS. I’ve not given up.

I think they actually want me to.

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No, You’re Not

Moving from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) was always going to be difficult, given the current climate.

Like most of us with MS, I had a lifetime DLA award.

Because, in simple terms, – MS  is a lifetime, incurable, degenerative illness – and one which we would probably all willingly give up, should a cure be found?

After filling in an interminably distressing form – which took weeks – and and after enduring a ghastly face-to-face meeting with someone who would later blatantly lie about me in her report, I submitted a mandatory reconsideration.

The odds are heavily stacked at this stage – over 80% fail.

I did.

However, should you go to appeal, the odds are in our favour; 67% of awards are overturned in favour of the defendant.

So, basically, get ready for a court case. A court case! To prove you have MS.

As if we don’t feel battered enough?

The form itself was a kind of reverse-therapy; focus upon every single tiny thing you now cannot do that you perhaps once did. In the process, write numerous essays highlighting these points in excruciating detail. Nothing is off limits.

I’m not exaggerating when I say that I was traumatised and utterly broken after filling in the form.

And then there was the rejection, and the reasons for them. Every single point seemed to be refuted as I seemed healthy and happy, dressed appropriately for the climate (I kid you not) and was able to put my fingers through my hair. Oh, and I laughed (with my witness, my mum, nervously).

Stunned.

I sent in a mandatory reconsideration, and now I have found out my claim stays the same, so my only recourse is an appeal. Which could take well over a year. And I’m to be ‘reviewed’ every three years.

It’s a legal nightmare.

What should I do?

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The Gap In The Narrative

There’s an insightful documentary on Netflix, ‘End Game’, about end-of-life care. It’s a beautifully moving film and I highly recommend it.

One of the doctors explained that ‘suffering’ is the gap we experience between how our lives were and how they are now, and this hit a real chord with me. It’s all about acceptance, right?

Although he was talking about the End Game, it was a powerful and invigorating point.

We are diagnosed, we grieve, we accept.

We gather ourselves together and get on with life, however short it may be.

It sums up what I’ve been tussling and struggling with these last six years.

Simple?

Perhaps not.

All of us who are diagnosed with an incurable and degenerative illness face loss, and it’s incremental. We may not be at death’s door, but the loss is there and potent. We may have to accept our jobs are under threat, our partners lose patience, our friends drift away.

Should we accept that this has happened and if we don’t, are we still suffering? Perhaps:

  • I could have pressed my ex-employer for more compensation, but I chose not to stoop to their level.
  • I should have been worried when the government and the media started spewing out anti-disabled/benefits propaganda?

Suffering to acceptance is a very, very difficult journey for anyone to make, far less someone with an illness such as MS.

So, say we get through all that, as I hope I have. My son is fine, my MS is governable. Right, next stop, Acceptance?

I think this is only true at a micro level, which I think an illness such as MS thrives upon, for the good. MS brings us up short. We do smell the roses. We are normally young so have the chance to change our lives.

It may not be absolute acceptance, but it’s half-way there?

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The More You Tell Us We Can’t, The More We Just Might

I don’t know how you guys are doing, but life under our present government is an anxiety-inducing experience of hell for me.

A weird, subversive world where right is wrong and wrong is worse, way worse than you could ever imagine.

And a world where MS is magically reversible because a former A&E nurse says so, after ‘observing’ you for half an hour.

MS. The illness they can’t even find a test for, far less a cure.

Cast your mind back to the last General Election – all those earnest politicians vying for your vote; the couple, the couple with 2.5 kids, the retired couple, the middle-aged couple. Where were you?

Did you once hear our leaders address the 1 in 5 of us who are disabled? I’m a media junkie and I didn’t hear a thing.

I heard about tax relief (I don’t earn enough), inheritance tax (I don’t have enough), and tax in general (I live at sub-poverty level). I heard about ‘hard-working’ families. About ‘hard-done-by-pensioners’.  Disabled people? Nope.

In fact, I was so annoyed, I responded to a BBC Wales tweet and ended up being interviewed, my absolute pet-hate, but the point had to be made. Not that it made much difference.

Our government was simply not listening to people with disabilities, Let’s be honest, few of us will get through life without some form of ‘disability’, so why be so shy about it?

Truth be told, we are simply not media-worthy, and the whole transition taking place from Disability Living Allowance to Personal Independence Payments is just another modern tragedy taking place in every single street up and down the country, but is under-reported on a terrible scale.

Want to know a secret?

Should you live long enough (and many, many illnesses are non-age-specific), you too will be disabled! Yep.

I am absolutely fed up with being ignored by politicians unless we are a good excuse for a photo-op. Some of us are in wheelchairs, some of us are not. Weirdly – we are all different.

Is it fair we have to fight just to get a taxi? Just to keep our job?

In my view, there has to be a backlash soon.

And it cannot come soon enough.

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