Tuesday, 18 December 2012

WOWpetition - Resisting the War on Welfare

On Tuesday, 18th December, 2012,  disabled and sick people, people with learning and mental health difficulties, their families and carers will launch a petition calling for an end to the War on Welfare being waged by their own government.

The Welfare budget, and particularly benefits going to sick and disabled people, has been heavily and unfairly targeted for cuts. It is said we can no longer afford the current welfare state. In reality however, as a percentage of GDP, the welfare budget is now lower than it was at any time during the eighties. While at the same time the combined wealth of Britain's 1,000 richest people increased by almost 5% to over £414bn.

In order to resist the government's cruel and failing welfare policies, sick and disabled people, together with their carers, families and friends, have combined using social media to produce the #WOWpetition. This calls for an end to the War on Welfare. Spearheaded by actress and comedian Francesca Martinez the WOW petition aims to get 100,000 signatures to end this War On Welfare by the government. We will be calling for a Cumulative Impact Assessment, an independent inquiry and if necessary, the repeal of the Welfare Reform Act of 2012.

We believe that every single person in the country has a reason to resist the War on Welfare. Some of us may be fortunate enough not to need the safety net our Welfare State provides, but this could all change for any one of us, tomorrow. It only takes an accident or a shock diagnosis to render us ill or disabled, and dependent on a system of benefits and services which is currently being dismantled.

The ‘Greatest Generation’ fought WWII believing they had secured this safety net for themselves, their children and generations to come. Don't let it go without a fight! We owe it to them. We owe it to ourselves to ensure a decent and dignified life for all who are sick and disabled, and to provide security for all our futures. The deaths of disabled people linked to the Welfare Reform Act and the Work Capability Assessment administered on behalf of the Government by the private corporation Atos are reported in the press with alarming regularity. We believe that in any humane society the Government would want to know if one of their flagship policies was in any way responsible for a ‘slow genocide’ of the sick and disabled. Please join Francesca and the WOW campaign in resisting the deaths and unnecessary suffering being caused: Sign WOWpetition.com


Twitter: @wowpetition #WOWpetition

UPDATE: The Bullying Tactics of DWP and ATOS

I posted on the 21st November about how the DWP and ATOS were treating my wife and her multiple Work Capability Assessments.  That Blog can be viewed here.

As I mentioned in the small update I posted on that, my local MP Andrew Stephenson was taking up the case with the Secretary of State.  I also complained to both the DWP and ATOS.

I've now had a reply from both my MP and DWP.

Firstly, the Department of Work And Pensions telephoned me last Thursday.  They stated that everything that had been done was within their rules and perfectly alright.  I questioned how long people can be placed in the Work Related Activity Group, and was told that it can range from 3 months to 2 years.  I was also informed that the assessment process - ie. when the ESA50 "questionnaires" are sent out - always begins 3 months before this period ends.

In other words, if someone is given a 3 month period in the WRAG, they could literally be sent a new questionnaire the day after.

Am I the only one who finds that utterly ridiculous?

I completely understand that the need for some sort of assessment process is necessary, but putting already ill people through this constant barrage of questions and "fitness for work" tests is almost barbaric.

Then we get to the Secretary of State's response.  Oh dear oh dear.

Written by Mark Hoban MP, Minister for Employment, he spends most of the letter exalting the benefits of ESA and the Work Capability Assessment before getting to my wife's situation in the final paragraph.  He states that  "Strict audit and quality control measures are in place to ensure that Atos healthcare delivers high-quality assessments", despite recent Panorama and Dispatches showing the contrary.

He also goes on about how Tribunals take into account different information and "Consequently, when a Tribunal overturns a decision, this is not necessarily due to a lack in validity or accuracy of the examination report used in the decision-making process."

Funny thing Mr Hoban is this - my wife has never been to a Tribunal.  I wonder why you mentioned this?

Mr Hoban states that new ESA50 questionnaires are "normally issued by Atos Healthcare two months prior to the next assessment date", which contradicts what the DWP Complaints Team stated to me earlier.  Indeed, I am aware of cases where people have received their decision and the very next day received a new ESA50 form.

All in all, Mr Hoban has produced a non-answer, avoiding the fact that my wife has a long term illness and completely ignored the hardship it is causing her.

It is a whitewash, and I wonder who it was intended to fool - myself and my wife or my MP.  I rather think it may be the latter.

My wife has complied and filled in the questionnaire, but this has caused her a lot of unneeded stress and she is struggling to cope, as well as having an effect on me at a time where I have more than enough to think about with my own health.  This is a ridiculous situation for her to be put in and I will not be stopping now.

Friday, 30 November 2012

Sick and disabled braced for enforced work-for-benefits programme

This evening the Guardian published an article on their website, talking about the decision by the Department of Work and Pensions to allow, from Monday 3rd December, members of the Work Related Activity Group (WRAG) claimants of Employment Support Allowance to be placed in the 'Work Programme', or Workfare as it is also known.  Now, of course, this type of story would be of interest to me as I am, currently, in that exact position.

Of course, I have another reason to be interested in the story.  It leads with me at the top of it.


This is really strange for me.  I'm not used to media coverage - my dealings with the media have been two short BBC childrens' educational programmes with Carol Vorderman when I was 11 years old and two very brief conversations on BBC Radio 5 Live earlier this year discussing the rising fuel duty.  Not exactly a "media darling", I'm sure you'd agree.  So, I hope you'll forgive me for being a little overwhelmed.

This is unbelievably important to me though.  My story is there in black and white and I won't re-hash it.  I've also detailed my physical problems before in This Blog.  But more importantly is the fact that these changes are coming on Monday.  Three days from now.

In theory ill and disabled people could receive a letter or phone call from their local JobCentre Plus from Monday onwards calling them in to do some form of work.  Remember, that is people who are receiving ESA, meaning that they have some sort of illness or disability that their General Practitioner feels is bad enough to warrant them not working.

Now take a moment and re-read that last sentence again, then think of this:  When did the word of GPs and other medical professions become almost worthless in this country?

But I digress.

If the unlucky person, already stressed and concerned with their own medical situation, gets this letter or phone call and has to attend, they will have virtually no choice but to comply - if they don't, they will be sanctioned, potentially losing up to 70% of their weekly money.

I'd love to see a politician try and live on £28.15 a week.

I stated to Shiv Malik, author of the report for The Guardian, exactly where I stand personally on this.  I'm absolutely petrified.  I'm currently appealing my placement in the WRAG, and have my Tribunal on December 11th, and yet it still scares the life out of me.  I can only imagine how others feel. 

And, in a way, I'm lucky.  I have an idea of what is coming.  Many, many others do not.  They don't have access to social media, and have absolutely no idea just how they could and probably will be affected by this.  That's why I'm desperate to get the word out, to raise awareness, and thankfully I'm not alone - there are many Bloggers, Organisations and many others trying to do the same.  And we will continue to do so.

I'd like to place on record my gratitude and appreciation to Shiv Malik for an excellent piece and for reporting on something many other journalists and media organisations seem to be shying away from.  I am extremely thankful for the opportunity to be involved and to tell my story.

Let us hope that someone in Government can somehow see sense.  I sadly won't hold my breath.

Wednesday, 21 November 2012

The Bullying Tactics of DWP and ATOS

I'm not the most prolific of writers, as this Blog is a testament to.  I write about things that are absolutely personal to me, and I wish I had the strength to write a lot more than I currently do.

Today though, I write about the most important person in my life - my wife - and the anger I have at the way the Department for Work and Pensions and ATOS Healthcare are treating her.

I've detailed in my previous posts the struggles that I have physically and mentally on a daily basis.  As I'm sure you can imagine, it can be extremely difficult for me to deal with, and without my wife it would be countless times more difficult.

Sadly, my wife has her own health problems to deal with also and has been on Employment Support Allowance (ESA) since August 2010.  She  is currently diagnosed with Polycystic Ovary Syndrome and Chronic Abdominal and Back pain.  She suffers from fatigue constantly and is being tested for M.E.  She is constantly in pain and, on her very worst days, struggles to move from one room to another.

In the little over two years since she was placed on ESA she has had to fill in an ESA50 - the questionnaire sent out by ATOS Healthcare prior to a Work Capability Assessment (WCA) being done.  This is the timeline since she has been on ESA:

  • Aug 2010 - Placed on ESA
  • September 2010 - Completed and Returned ESA50 Form.
  • October 2010 - Medical Assessment with ATOS
  • November 2010 - Claim denied and ESA stopped.  Appeal immediately submitted and ESA restored at "appeal level".
  • February 2011 - Appeal accepted and claim reinstated.
  • September 2011 - 2nd ESA50 Form received and completed.
  • October 2011 - 2nd Medical Assessment with ATOS.
  • November 2011 - Claim once again denied and ESA stopped.  Appeal immediately submitted.
  • February 2012 - Appeal successful and claim reinstated.
  • June 2012 - 3rd ESA50 Form received and completed.
  • July 2012 - 3rd Medical Assessment with ATOS.
  • November 2012 - 4th ESA50 Form received.

So, in just over 2 years, my wife has had to endure three medicals and three appeals process, dealing with the stress and uncertainty for months at a time.  To make matters worse, she's been awaiting a decision on her latest since July only to receive a new questionnaire this morning!  It's making her more and more ill - she's been in tears all day since the post came and is struggling to cope with this all.

This isn't the first time I've heard of situations like this arising - sadly they're happening more and more in this current climate - but I genuinely fail to see how making ill and disabled people worse by causing distress and worry can ever improve the situation.

I will not stand (or sit, as tends to be with me!) idly by and watch my wife be persecuted by a government body just because they want to pigeon hole every claimant as fit for work.  No ill person wants to be out of work - do our leaders really think it is fun living on the meager amounts we get on benefits?

Oh wait, I forgot - they think we're all scroungers, don't they?

I find it ironic that during Anti-Bullying Month, the Department for Work and Pensions are conducting their own bullying right under everyones' noses.  I write this Blog not only as an outlet for my anger but to continue to raise awareness and as a public record.  I have written to my local MP and await his response.

I will keep you all informed.


I contacted my local MP yesterday, Mr Andrew Stephenson, with regards to the above.  He replied very quickly, stating that "it certainly does sound excessive" and that he "will take up her case with the Secretary of State.

I look forward to hearing from him in the near future, and in the meantime will be submitting my own complaint to the DWP and ATOS.

Monday, 3 September 2012

Living With Chronic Pain – My Story

Close your eyes for a moment and think back to your earliest childhood memory? Perhaps a sunny day in the park with your Mum and Dad, the smell of freshly cut grass filling your senses as your Dad pushed the swing you sat in? Or maybe the cacophony of noise overwhelming you as your favourite footballer scored the winning goal at your first ever football match? Whatever it is, I truly hope it's a happy memory that you cherish unreservedly.

Mine is... somewhat different.

I was born with a condition called Spastic Diplegia, which is a form of Cerebral Palsy which affects my lower limbs. You can read more about it here: http://en.wikipedia.org/wiki/Spastic_diplegia . I was born with the umbilical cord wrapped tightly around my neck which, as far as I understand, cut the oxygen off to my brain temporarily and resulted in this condition. It was discovered when I was about two years old, when my parents realised that I was struggling to walk.

Which brings me nicely to my first memory, led face down on a hospital bed and feeling nine stitches being taken out of my right leg (the old kind of stitches, mind, not the dissolveable ones they use nowadays). I remember the smell of the room, and the rough feel of the sheets on my face. Not the most pleasant of first memories, sadly.

Over the next few years I endured a daily exercise routine (Sorry Dad!) which was excruciating at times and so very frustrating – with the nature of the Spastic Diplegia, any “success” was tiny and very difficult to see, and with my balance being as bad as it is, accidents were a very regular occurrence and I spent many times at the local hospital Accident and Emergency department. I had weekly hydrotherapy that my mother had to drive an hour to and from in order to ensure that I continued getting movement in my legs. It wasn't easy, on me or my parents I'm sure. You can imagine what it was like at school for someone who walked a bit differently. I was bullied through my entire school life.

When I was about seven years old a consultant – talking over my head to my Dad – told him that I'd never run or play sports, a devastating thing to hear for a young boy. It has stuck in my head all my life. As I went into my teen years my right knee started dislocating, making a right mess of my leg the first time and then similar results until the orthapaedic surgeons decided to operate to stabilise it. My left knee went the same way a few years later.

I'm now in my mid 30s and I've had six operations on my legs. They wanted to do a lot more.

I've always had pain in my legs – every single day – but it has only become overwhelming in the last 3 or 4 years. I had a fall 10 years ago where I slipped in the snow one January morning – a seemingly innocuous occurrence but I knew straight away my right knee was in trouble. It hasn't been the same since. Over the last four or five years, though, the pain has become increasingly unbearable.

Two years ago I was diagnosed with Complex Regional Pain Syndrome (CRPS) http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome .

Today, I struggle with pain throughout both legs – my right leg was always the worst but sadly the left is catching up steadily – from my hips all the way down to my ankles. I've developed osteoarthritis in my left hip and both ankles as well as my right knee. I sleep maybe four hours a night if I'm lucky, and wake up in between that in absolute agony. I cannot count the number of times I've woke up in tears or having to stop myself crying out so I don't disturb my wife any more than I already do.

I don't write this looking for sympathy, not at all. I share my story so that people realise just what someone like me – and there are those out there who are much worse off than me – goes through on a daily basis.

Imagine waking up with your legs feeling like they're on fire, from the inside out. Your lower joints ache from trying many times to get comfortable during the night – which your wife had to help you with because moving was so difficult – and then it takes 15 minutes just to be able to stand up and go to the bathroom. Walking every single step is painful, and carrying anything is almost out of the question. Oh, and you've damaged your shoulder and chest from using elbow crutches for so long. You have to wear a painkilling patch and also take very strong oral painkillers on a daily basis. You can only walk a few steps without stopping and spend most of the time exhausted.

Not exactly the life of riley, is it?

So what do we do? Dealing with Chronic Pain is, undoubtedly, no picnic. We do what we can. We do what exercise we can (if we can), work with Pain Clinics and medical professionals, with physiotherapists and Occupational Therapists to try and make our lives as manageable as possible.

Most importantly, though, we rely on one another, through support groups and social media. I'll take a moment to point to a brand new site called Chronic Relief who are hoping to set up a community for sufferers and support – they can be seen at www.chronicrelief.co.uk . Drop by and say hi!

A note of positivity to end on – despite the depression, the pain, the struggle that I go through every day, it is always possible to find positives – with family and friends, with interests, with your loves in life. Never underestimate a good movie or a wonderful book, or a beautiful sight or sound in this wonderful country we live in. Despite any hardships there is a lot to enjoy.

I wish everyone a pain free evening, and a smile at the end of each day.

Monday, 6 February 2012

My Lowest Night...

I've written and deleted this Blog ten times or more.  For the first time in a years, I'm struggling to find the words to express my heartbreak, my pain, and my disgust after last week's utter betrayal of disabled people in this country.

Perhaps this one comment will sum it up perfectly.  And please note, this is not something I share lightly.

I led in bed the other night and all I could think is, "my wife would be better off without me."

I'd like you to think about that for a moment.  I'm sure you can work out the implication of what I was thinking.  I don't need to spell it out, I hope.

It's important to point out a few things from my own point of view.  I am, usually, a very personal individual, where I guard my own financial details carefully.  I find it deplorable that disabled people such as myself are forced to justify their monetary existence just because we must rely on the State.  Nevertheless, I will dispense my misgivings for a moment.

I am on long term Incapacity Benefit - the benefit that it is currently being phased out in favour of Employment and Support Allowance (I am awaiting the re-assessment team moving me across to ESA) - at a rate of £108.05 a week.

I am also on Disability Living Allowance (DLA), with Higher Rate Mobility component of £51.40 a week and Lower Rate Care component of £19.55 a week.

My wife is, sadly, also on Contribution Based ESA due to a long term illness, and currently receives £94.25 a week.  As this is contribution based, she has already had a letter telling her that from April she will be moved onto Income Based ESA of £32.43 a week.  Despite dealing with intense abdominal pain on a daily basis, being virtually unable to bend down without excruciating pain and limited mobility, she has been turned down twice for DLA.

We receive Housing Benefit of £49.33 a week - please note that this does not cover our rent entirely and we have to pay the remaining £19 a week.  Similarly we also receive £14.27 a week in Council Tax benefit, and have to make up the shortfall.

And that's it.  No other top ups, nothing.  Between the both of us - a long-term disabled man and a woman who is struggling to cope with both her own condition and mine as well, and all included we get this (yearly figures):

Incapacity Benefit:  £5618.60
Disability Living Allowance:  £3689.40
Employment And Support Allowance:  £4901
Housing Benefit:  £2565.16
Council Tax Benefit:  £742.04

Total:  £17,516.20

That's right, seven and a half thousand pounds lower than the much heralded £26,000 figure that the Coalition Government have been determined to splash around everywhere they can in order to justify their position and whip the public into a frenzy over "benefit scroungers".  Of course, they always shy away from giving the full details, relying on the mainstream media to peddle their lies.

Oh, and don't forget - in April we may lose £61.82 a week thanks to the changes to contribution based ESA.  That means that yearly total may be reduced to £14301.56.

Almost £12,000 lower than the £26,000 that's been much talked about.

Oh, and as my wife has just reminded me, because I'm on Incapacity Benefit we get no help with prescriptions, dentist costs or opticians.

I cannot even begin to express the fear that the next few months and into 2013 are bringing to me.  The changes to DLA - moving it to Personal Independence Payment (PIP) from April 2013 - are genuinely frightening to many people like me as discussed in this interview with Baroness Tanni Grey-Thompson.

And it's not just disabled people who will be affected by the Welfare Reform Bill.  May I highly recommend this blog by DarkestAngel32 for all the details.

The uncertainty is sickening for myself and thousands of others like me and worse.  And I ask a simple question of everyone reading this:

Is this really the kind of society you want the UK to be?

Tuesday, 17 January 2012

My Lords, Imagine For A Moment...

This evening, the House of Lords will continue their review of the Welfare Reform Bill, today focussing on the proposed changes to Disability Living Allowance.  The concerns of many disabled recipients of this vital benefit have been discussed in many forms, and will continue to be discussed long after the Lords have finished their debate today.

This blog, however, is a personal message to those Lords who will be in the Chamber this evening.  A plea, if you will.

My Lords,

You have heard from many different quarters the various opinions concerning the Welfare Reform Bill, and today, specifically, the proposed changes to Disability Living Allowance.

I am a current recipient of Disability Living Allowance.  As I have mentioned in my other Blogs here (see below), DLA is absolutely vital to me maintaining an independent life.

The purpose of this, however, is to ask you, just for a moment, to imagine yourself in a situation such as mine.  Imagine yourself in a day in my shoes...

Imagine waking up at 8am, your alarm clock blaring as you struggle to turn over and hit the snooze button.  This is the fourth or fifth time you've woken during the night, mostly because you're unable to turn over or because of the absolute agony you've had during the night.

As you turn to disable the alarm, your legs and back surge with the first shot of pain of the day.  These shots will continue, unrelenting, for the rest of the day.

Taking your time – mainly to ease the pain as much as you can – you pull yourself upright and swing your legs over the edge of the bed, biting your lip to stop screaming from the pain as your knees bend awkwardly.  Your head spins – dizziness is a constant friend to you – and you settle yourself as much as you can.  Your crutches are next to your bed, within reach as you always leave them, so slowly you lean forward and grab them.

It's 8.15am now – and you're still not out of bed.  Your wife (or husband or carer, delete as applicable) is by now around to you, helping you to stand up extremely slowly.  She's seen you at your absolute worst, and is there every single day, by your side.  Your rock.  You move your crutches in place, and slowly begin to move forward.  The door is opened for you, and you head to the bathroom.

Thankfully you've had the bathroom modified – thanks to the local Occupational Health who have assisted because you are a recipient of DLA – so you're able to use the railings to sit yourself down slowly.  Unfortunately, due to the myriad of drugs you've needed to take to deal with your pain, swelling and so on and so forth, you've developed Irritable Bowel Syndrome, so bowel movements this morning are more painful than usual.

Just another thing you have to deal with today.  And it's only 8.30am now.

In time, you get back into the bedroom, and your wife helps you get dressed.  You cannot reach down to put your socks on, so your wife does that for you.  For a moment you dwell on this fact, wishing that you were able to do it yourself without the excruciating pain that would be involved.  She helps you with your trousers, but you're lucky enough to be able to put your top on that had been lovingly put out for you.

Breakfast is next, which is prepared for you.  A simple meal, cereal and a cup of tea.  Your wife brings it to you, along with several tablets, your first medication of the day.  You already wear a painkilling patch which lasts for a week, but there are other painkillers in this handful, as well as anti-inflammatories and others to help with your bowels.  In total, you will take 20 tablets with your meals today.

As you sit eating your morning meal, you can feel your legs and back tighten, the pain increasing with every minute.  Moving a little can ease this, but for a moment and nothing more.  Of course, moving in itself is painful so you have to find a balance between moving and staying still.  It will be the battle of the day, as it is every day.

But you have a meeting with your Doctor later that morning.  Getting ready for this means getting up and changed – you need help at every stage of this – and then you leave the house to go to your Doctor.  This is one of the scariest things for you – going out is frightening, thanks to all the falls you've had over the years, knowing that one fall could injure you even more than you already are.

As you're just going a very short distance you use your crutches – you have a wheelchair for anything other than short distances – and you attend the Doctor's with little problem.  Thankfully, the car is a Motability vehicle, paid for from your DLA and means that you are able to get out and about with relative ease.

Without it, you wouldn't be able to go anywhere.

The Doctor is concerned about you as always, realising you're struggling on a daily basis.  He makes appointments to see Consultants, with the hope of somehow improving the quality of life.  You leave with a little more hope, but not much – you've heard it all before.

You get home at mid-afternoon, tired from going out.  Just that small journey is exhausting, so you go and take a quick nap after you've been helped to change.  The short sleep is fitful, unable to get comfortable and waking every few minutes in pain.  You eventually give up, and with help get up, heading to the bathroom again before trying to get comfortable again.  You have a mid-afternoon meal – a sandwich, despite your appetite being very low.  You need to eat though to keep up the regiment of medication going.

You spend the afternoon responding to correspondence – both letters and emails – and are able to break up the time by moving between your sofa and the desk where you computer is at.  You need to move every quarter of an hour or so, as the pain builds up.  At one stage you're in tears because of the pain in your legs, your wife comes and hugs you, comforting you until the pain subsides a little.

Your wife prepares you a wonderful meal for evening dinner, your favourite, and in the evening you both decide to watch a movie as you are both keen movie fans.  You treat yourself to a little popcorn.  Sadly, you have to pause the movie several times, the need for movement and bathroom breaks a usual part of an otherwise lovely evening for you both.

By 8pm, you're absolutely exhausted, as is your wife who has been caring diligently all day.  You decide to have a shower before you retire.  Your pain-killing patch has been on for its full 7 days so you replace it before getting into the shower.  You can only stand in there for a minute or two though, holding tightly onto the bar that has been installed, before you're in agony again and, with help, retire to dry and go to bed.

It's 8.30pm now.  You've been awake just over 12 hours.  It will take you several hours to get to sleep, the struggle to get comfortable a nightly battle.  You don't toss and turn, you're not able to.  In fact, turning is a laborious manoeuvre and probably the most painful thing to do.  You have no choice but to try though, and finally, thankfully, sleep takes you.  At least for a while.

My Lords, imagine if that was your day.  Imagine the stress that a day such as this would give you.  Then, for a moment, I'd like you to imagine adding the worry of losing a benefit you rely on, as many Disability Living Allowance recipients do.  Imagine the worry of not knowing what's going to happen to your vehicle – that you absolutely rely on.  Imagine how scared you would be.

That, my Lords, is where we are.  Right now.

My Lords, we're not saying that DLA doesn't need reforming.  It does.  What we are saying is, please, pause for a moment.  DLA gives many people, myself included, the chance to live a somewhat independent life.

It is absolutely vital.

When you vote today on the Amendments before you, imagine yourself in our position for a moment.  Imagine the fear we have, on top of the pain and the uncertainty that comes with living with a disability.

Please, let us have our pause.  Let this be discussed, properly, carefully.