Tag Archives: PIP. DLA

Really? Was It?

According to the dictionary, ‘gaslighting‘ is a form of manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, hoping to make them question their own memory, perception, and sanity.

I remember watching the old 1940’s film, ‘Gaslight’ as a kid, the husband manipulating the wife into believing she was losing grip on reality.

Never has the term ‘gaslighting‘ been more apt than today, when thousands of us with indefinite Disability Living Allowance awards are being reassessed for Personal Independence Payments.

You thought you had MS? Parkinson’s? Think again.

You thought you had problems with balance, walking, cognition? Think again.

You’ve taken the time and immense effort to fill in the 40-page form (which essentially amounts to writing the equivalent of 14+ essays). You’ve endured the stress and fear of losing what is for some the only payment between you and poverty (it certainly is in my case).

You have also probably gone through the extremely difficult process of raking through your life, highlighting just what you cannot do, after years of trying to be upbeat, contribute to the community and in short, remain an active member of society.

Yesterday, I was slumped on the sofa after work, The Teenager slumbering safely upstairs in his old bedroom after a night out catching up with friends, back for the Easter break from University.

Despite my fatigue and pain, I felt proud I was still working and I was still able to maintain our home of 14 years.

However, reading through my PIP Award (never has a word been so misused) Letter, I felt deep confusion. I was reading about someone else. This never happened. I don’t recognise the assessment in the letter, and neither did my witness.

With an illness such as MS, this seems particularly cruel, as the diagnostic process can seem similarly confusing.

For months, years for a lot of people, we try to make someone ‘in charge’ make sense of our random bundle of symptoms. They often don’t hang together well (we all get tired, we all feel a bit buzzy around our feet at the end of the day?).

Even six years after my diagnosis, I still feel like a fraud – how can you possibly describe what it’s like to have MS when so many of our symptoms are internal? And internal, impossible-to-see symptoms are easy to dismiss.

And this is despite me having highly-active, or rapidly-evolving MS, for which I’ve had Lemtrada treatment three times, one more than the standard two. It’s a brutal treatment and not one undertaken lightly.

During my PIP assessment, I was led, confused and upset. Not true apparently. I was well-dressed, confident and happy. Who to believe?

Who do you believe?

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Not Private, Not Confidential

be honestI’ve had some lovely emails recently, thanking me for highlighting both the gruelling PIP process and the issue of poverty amongst disabled people, like myself.

It hasn’t been easy being so open, but my blog has always aimed to show the reality, good and bad, of living with MS.

The parallel, Non-MS Me (the one I often think about) would be living a very different life; I’d probably still have the usual money worries like anyone else, just not the grinding, heart-stopping ones I have at the moment.

It’s an easy path to trace – having to reduce working hours due to MS, to being sacked for having MS, to taking on a less-qualified job but one which allows a great deal of space to deal with MS. And then, that’s it – I doubt I’ll ever find another job which could give me the freedom I have right now, a huge benefit of working with my best friend who’s been through the whole MS process with me.

What’s not so easy to trace is the impact of everything else MS involves – the emotional upheaval, parenting with MS, the demands of invasive and intensive treatment, the side-effects and of course the ongoing symptoms. Thinking about it, it’s a wonder we came through it at all.

So, financially, MS can be as damaging to your finances as to your health and it can quickly become a downward spiral: MS symptoms may lead to social isolation, not helped by a lack of finances, which leads to stress, which leads to more MS symptoms, which leads to more social isolation. And then your benefits get stopped and it’s a whole different, terrifying ball-game.

I didn’t grow up poor and I didn’t expect to lead some of the best years of my life in poverty. But it’s happened and I have to deal with it, along with the 14 million others in the UK (1 in 5) who live in poverty today, an increase of 700,000 since 2013. In the UK, the fifth-richest economy in the world.

My main aim, as always, is The Teenager. I have raised him to appreciate money but not to be too hung up on it – to invest in experiences, not material goods. To enjoy sourcing a bargain and to learn how to draw up a budget at University. Which is probably why he arrived back home at Christmas with three loads of laundry (£6 a load at Uni, free at home) – I only have myself to blame.

Poverty is not shameful (a fact I had to get over, before ‘going public’) – it is the government who should feel shame and the employers who dismiss us who should feel shame.

We need to keep putting pressure on the government, keep forcing more PIP u-turns and feel … outrage?

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Driving Miss Crazy

Cardiff-20130603-00198The day I was diagnosed with MS I was instructed to inform the Driver and Vehicle Licensing Agency (DVLA) toot suite, on pain of flogging or death. Well, no, not really, but it was a pretty stern diktat.

I duly found my way through their labyrinth website, downloaded the forms and sent them off. A year passed and I was confident they had forgotten all about me and had guessed I was still a safe driver. I had even taken an ice and snow driving course when I lived in Norway, a terrifying day where I drove down a vertical hill covered in oil to simulate the experience.

The other week though I received a letter with the words, ‘the Medical Advisor has recommended that your current licence is withdrawn…and a new licence will be issued to you, which will be only be valid for 3 years.’ Bearing in mind my previous licence was valid until well into the 2040’s, I was a bit upset.

For unscientific research purposes, I asked the Twittersphere if this was a standard procedure. Apparently it is. Which strikes me as rather odd and arbitrary. If only the powers that be who will be overseeing the change from Disability Living Allowance (DLA) to the Personal Independence Payment (PIP) could also accept that MS is a degenerative, progressive illness with no cure. Why make us re-prove that we have MS and it doesn’t get better? I doubt that anyone with MS who has a 3 year license will suddenly be deemed ‘cured’ and re-issued with a longer licence.

To rub salt into the wound, I am also now banned from driving 3.5 – 7.5 tonne vehicles and minibuses (not for hire or reward), for medical reasons. Not that I have any intention of doing so, but it would have been nice to have had the choice, just in case I wake  up one day and think, ‘do you know what, I really feel like bombing down the motorway in a big truck today.’ As you do.

So now my licence lasts until 2016 at which point they will review my case. I’m off out now for a little tootle in the car. The Thermos is ready, the tartan blanket  is packed and I have a tin of pear drops in the glove compartment. Just to be on the safe side.

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