Tag Archives: DLA

Thanks For The Reminder, DWP

reminderI saw my lovely neurologist last Friday for my yearly review and to check how I was after my last Alemtuzumab treatment.

I was feeling fairly well that day, having taken the previous day off work as I had an early appointment. Just as you do, when you have MS? We learn to build in ways to … manage.

So, we chatted about the appalling time I had had from February until May, and the still-lingering symptoms. We discussed my fatigue, and sadly, the medicine that could have helped enormously has been taken off the market; so I’ll have to keep on dealing with that as best I can.

I got home (in a taxi as I can’t cope with the stress of parking at the hospital), and went back to bed. At 10am. It’s what we do? I cope best by being prepared, factoring in sleep time, down time, can’t do anything time. It feels so normal now, I hardly give it a second thought.

The next day, the DWP letter  ‘inviting’ me to apply for PIP arrived on my doorstep, and everything changed.

When you know you will have to go into excruciating – and at times highly intimate – detail about every single aspect of your illness (and your life), reality smacks you right in the face.

I gloss over many of my symptoms, maybe laugh them off. They’re part of me now and I cope as best I can, and a lot of the time not very well. But I’m still here. Writing everything down is a depressing exercise in negative thinking and now I can’t help but play a running commentary in my mind.

Take yesterday: I called in sick to work. I simply could not cope with the stress of these forms. I was in a pretty bad way and shut out all contact bar this blog (and of course The Teenager, natch). I shut down and shuffled from my bed to the sofa and back again.

This morning, the commentary kicked in as soon as I woke up. Balance, dodgy hands, balance again, dropped stuff. Tripped over the cat, the rug. Attempted and abandoned a shopping list. This is my life now. But to have to catalogue and write down every single thing is horrendous. It’s now glaringly obvious to me just how much life has changed in the last six years.

My life is very, very small now. As a former proud globetrotter, for my horizons to have shrunk to my house and the passenger seat in the Boss’s van is depressing at the best of times. My life is extremely limited but I try to appreciate the beauty in simple things.

Not now. My living room window, through which I view life going on outside of my own experiences is now a window in a jail cell. My house, my safe haven, is now unsafe and at risk.

I thought I was doing the right thing, maintaining a positive attitude after two years of deep depression, still working (albeit with someone who accepts it’s completely normal for me to nod off mid-conversation). This all feels blown to pieces. Do they want me to give up? Call in Social Services? Admit I can’t cope?

Because, it’s beginning to look a lot like that.

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Today’s Blog Is Brought To You By Letters, D, W and P

alloDWP. Brown envelopes.

Guaranteed to make any person with MS angry and anxious.

Since receiving Disability Living Allowance when I was diagnosed with MS, I now have to move to a Personal Independence Payment (which sounds enticingly exciting and intrepid?).

Well, it’s as far from independence as I can fathom.

My own personal case to one side (one I am prepared to fight, and fight hard if necessary), let me just ask, ‘Is MS Curable?’ The DWP seems to think so. For every person who has been or is still on a lifetime award with DLA (and rightly so), you now have to prove you have MS?

MS. Is. Incurable. Incurable.

Why on earth should we have to prove MS is … incurable?

Disability is great at making us invisible. We stay at home, through illness, relapses and fatigue. When we do go out, we are faced with hostility and abuse. How dare you have a blue badge? Move out the way, you’re slowing me down. You’re not working as hard as you should.

And this is the epitome of rendering us utterly out of sight (where we should be?), stuck at home, beset by social isolation and ever-increasing disability. Well done, DWP.

I live alone, now The Teenager is at University. Of course, all my child-related benefits have gone. However, as any parent with Uni-aged children know, you don’t suddenly stop paying anything at all towards their upkeep. Plus, University is 30 weeks of the year. The other 20 are invariably spent Chez Parent (in my case, the only parent, my ex-husband not being in the picture for this). The expense, in part,  remains.

And you cross that hurdle. And as the only person in the household, you trim your cloth according to your means. You adjust to a vastly reduced income, despite vaguely similar outgoings.

And then they come for you. The payments that made it possible to stay in work, to pay for help around the house. And now all that could disappear.

I’ve done the maths. My weekly disposable income with The Teenager at University is embarrassingly low. If I lose my disability payments, I will be in Minus Living.

What sticks in my gut with this whole thing is that I have worked my entire life, fought off a workplace discrimination case, started work at a new job and am still working. A job that fits around my MS, so-called ‘good-days’ and the utterly horrendous days, not forgetting the Can’t Function At All Days.

At this moment in time, I have been brought down so low, it’s hard to know how to come back up again. I could lose my house.

And I really thought I would be rewarded by trying, by dragging myself out of  bed day after day after day, all these years. By pushing myself to do things I would not have attempted previously.

There’s the nub. I should give up work. I should accept I have no other wage coming in. I won’t be able to live independently. And maybe I would Shut Up. And disappear.

D is for Diabolical Discrimination.

W is for Why are you doing this?

P is for Please, give me a break?

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MS, DLA And Work….

MS, DLA and WorkLet’s get one thing straight. DLA is not an out-of-work benefit. In fact, it helps many people with MS stay in work.

The Government and media’s growing focus on ‘fairness for taxpayers’ leads many to believe that disabled people are a separate group who contribute nothing to society.

A Freedom of Information request, published in August this year, stated that the number of working age people receiving DLA is 1,839,000, of which the number of those in employment is 386,000 (21%). There are 127,000 people living with MS in the UK with just 50% of them claiming some form of DLA (63,680).

Working with a variable and unpredictable illness is difficult enough in a recession-hit economy and with hardening, right-wing attitudes towards anyone disabled, it’s no wonder the figures for those with MS in employment are so shocking:

  • Fact – more than 75% of those with MS say their condition has impacted their employment and career opportunities.
  • Fact – up to 80% of people with MS stop working within 15 years of the onset of the condition.
  • Fact – up to 44% of people with MS retire early due to their condition (the European average is 35%).
  • Fact – people with MS lose an average of 18 working years.

As DLA is phased out and replaced with PIP, people with MS will be forced to submit to humiliating re-assessments to check that we are indeed still living with a degenerative, incurable illness. Note the word ‘incurable’. Perhaps the Department of Work and Pensions should be renamed the Department of Miracles?

Working with MS means coping with reduced dexterity, cognitive impairment, limitations in mobility and overwhelming fatigue, among many other symptoms. Coupled with some employers lack of knowledge and understanding of MS and it’s easy to see how staying in the workplace can seem like an uphill struggle.

I’m fortunate. After a hideous year of relentless bullying by my previous employer and colleagues which ultimately led to me being sacked for having MS, I now work for someone who has taken time to learn about the condition yet is also aware of the strengths I can bring to my job.

DLA can make a real difference to people – just ask David Cameron, our venerable Prime Minister. The multi-millionaire (and son of millionaires and son-in-law of millionaires) once claimed it too…

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Speak Up, Be Heard

PIPSpread the word – cautiously optimistic news – the Department of Work and Pensions are reviewing a recent decision to change the mobility criteria for the new Personal Independence Payment (PIP).

This comes after the MS Society and 50 other charities that make up the Disability Benefits Consortium challenged the strict mobility criteria for PIP and highlighted the devastating impact this would have if it wasn’t reviewed.

For the old Disability Living Allowance higher rate mobility payment, applicants had to prove they were unable to walk more than 50 metres. To receive this enhanced rate under the rules for PIP, this was cut to just 20 metres.

People with MS and other disabilities are now being asked to raise their concerns about these changes. The consultation would like us to answer one question – ‘What are your views on the moving around activity within the current PIP assessment criteria?’

We all know that the particular problem with MS is it’s variable nature. Some people can walk 20 metres one day and yet be unable to get out of bed the next. The very fact people with an incurable illness are being reassessed at all is heartless and the changes are causing unnecessary worry and fear. If a person who has previously been awarded the higher rate of mobility allowance and has a Motability car, they are in danger of losing this vital lifeline if they are reassessed and found not to be eligible under the new rules for PIP.

If you think you will be affected by the changes, you can respond to the consultation by reading it here  (details of where to write to/send an email are at the end of the document) or you can email the MS Society  – campaigns@mssociety.org.uk – and they’ll let you know how you can get involved in the campaign. We need to be quick though – the consultation ends on Monday 5th August.

Anyone who has ever applied for disability benefits knows it is not just a case of filling in a form, nor do we receive free BMW’s as the press would have the public believe in their continued witch hunt against disabled people. If we don’t speak up, we lose our voice.

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