Tag Archives: PIP

Life Under A Brown Cloud …

pityEver since that hideous brown envelope plopped on to my doormat, life is, well, sludgy brown.

It’s remarkable just how much an ‘invitation’ (lol) from the Department of Work and Pensions, to move from DLA to PIP can suck the life out of you.

The days since Envelope Day are passing in a blur of those twin enemies, Fatigue and Fear.

Instead of moving forward in life, I feel I’m now stuck, analysing every symptom, everything I do and everything I cannot do.

It’s like having one of those harsh interrogation spotlights suddenly shining in my face, where I have to prove every single thing, without seeing beyond that light, to who’s sitting behind, making decisions which will affect my life for years to come.

I’ve lost interest in everything I normally love. I go to work (because I have to, otherwise I wouldn’t), I come home, I lie on the sofa and stare at the not-very-interesting splodge on the ceiling. I don’t cook any more. Laundry is building up. I can’t read, so I watch terrible tv. I sleep. A lot.

In work yesterday, I was hit by a wave of the most hideous fatigue, so overwhelming it was painful. I went to the van and fell asleep, my whole body wracked with nerve pain. My hands have stopped working properly and are tingling and numb every day. I can’t think properly. When The Boss dropped me off, I curled up on my sofa and slept for three hours straight.

I’m trying really, really hard to stay positive and to keep hold of a sense of who I am and the person I have become since being diagnosed with MS, but this experience is pushing me to my limits of endurance. Do you ever get that feeling you just want to lie down and say, ‘ok, ok, I give up, I tried, but I’m so tired of this, you win’?

I’m edging backwards to the terrible and soul-destroying Pity Party for One I held shortly after my diagnosis and I can’t seem to stop it. Going forward is not an option at the moment.

I’m clinging on to my old life by the skin of my teeth. I can live on very little money and still be happy. I’m inventive, a Womble, and quite happily make do with charity shop clothes and second-hand books.

When even that is under threat, what’s next?

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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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