Friday 29 June 2012

Journey; Part 1 update

Today I received a letter from the DWP. I was amused to see that they had used the stamped addressed envelope I included for them. They don't usually do so. At least my stamp did not go to waste.

They stated in the letter that I had been on Income Related Employment & Support Allowance.

The letter did not say so, but this will explain why they ceased my ESA when I received my divorce settlement. I should have been on Contributions Based Employment & Support Allowance. As such the money should not have affected my payments, and I should be able to reclaim a few months worth.

It seems they believe I started claiming in February last year however, so I only missed two months of payments. I believed I started claiming in April, I am however happy to assume that their records are correct. As such, if I fail in my endeavour to reclaim the money they owe me, I have not really lost all that much.

Wednesday 27 June 2012

Ministry Of Justice Video on Tribunals

[Taken word for word from one of the benefits groups]:

"Appeals video, from Benefits and Work:

HELP MAKE CHRIS GRAYLING MAD
Here’s an opportunity for you to help make a minister wish he hadn’t interfered.

Back in March we wrote about the Ministry of Justice’s (MoJ) employment and support allowance appeals video (external link) on Youtube. The video was pulled after less than a week, on the orders of senior officials.

Independent benefits expert Neil Bateman (external link), discovered that the video was taken down after employment minister Chris Grayling emailed the ministry complaining about, amongst other things, the fact that it told claimants:
that they are twice as likely to win their appeal if they appear in person rather than having a paper hearing;
that the DWP doesn’t normally send a representative to the hearing;
to send additional evidence to the tribunal, when Grayling wants it sent to the DWP.
Yesterday, three months later, the video reappeared and, to their credit, after their initial panic MoJ officials seem to have left it unaltered. The video is actually reasonably informative and reassuring for people who have no previous experience of appeal tribunals.

Normally, however, MoJ videos get very little attention – one has had just two views and few of the 120 videos on the MoJ channel gets more than a few hundred views.

If Grayling hadn’t intervened this video would probably also have remained largely unseen. Now, however, we’re asking Benefits and Work newsletter readers to make it the most popular video the MoJ has ever produced. The current record holder has had 4,269 views and the ESA video currently stands at 1,063.

So, please, make Grayling mad by taking a look at the video and passing the link on to anyone you think might benefit:"





Monday 25 June 2012

Stop pushing me!

When will you stop hurting me?
You've already taken everything I have,
and yet you are not satisfied.
You took my friends
You took my family
You took my social life
You took my job
You left me with memories,
that are now so distant they're more like dreams.
You depress me
You hurt me
You cause me so much pain that I cannot stand the touch of a loved one
You push every limit I thought I had,
make me question everything I thought I knew about myself.
And still you push more.
You affect my heart
You starve me of oxygen
You make every nerve feel like it's on fire
or stop me feeling anything at all
How can anyone live like this?
You take away light
and sound
and touch
You give nothing
Leave me with nothing
And still you push further.

Thursday 21 June 2012

Don't forget me!

A young lass posted yesterday to one of the M.E. groups on Facebook. She was upset because one of her friends has, for want of a better term, moved on. She is a young lass, her friend is continuing to go to the pub, to parties, out with other friends, and she feels resentful towards her. She can't understand why her friend is doing these things without her.

Sometimes having M.E. feels a bit like being a stone. A stone lies on the beach year after year, with the sea washing in and out on a daily basis, everything the same and repetitive. The rush of children running in and out of the water, fish swimming over our heads; a lot of activity that simply does not involve us. A stone, left unturned, undisturbed, ignored.

It is very easy to view things in that way and to become depressed by it. We cannot do the things that we used to. We cannot keep up with the activity our friends and family can. People are tactless, and will frequently flaunt in our faces the many things that they are doing and can do, without realising the pain that this causes us.

If we were in their position, would we really do anything different? We can't expect everyone to tread on eggshells around us all the time. We can't expect them to give up their lives because we've been forced to give up ours. We have to become thick skinned.

However, real friends will adapt for you. Any friends worth their salt will continue to invite you to events, unless you ask them not to, and not be offended when you can't go. They will share with you the thrills they experience when they are out and you could not attend. And they will make time to spend with you, in your space, to your ability, even if that means sitting in silence together.

It is sad, but everyone who developes M.E. has to go through the phase of learning who their friends really are. If you know someone with M.E. please don't leave them behind.

The benefits system is blameless ...

Another of the large popular newspapers is becoming aware of the problems with the benefits system and the changes therein. This is an item on their website, a video, so presumably not an article that was published in the newspaper. It's very powerful.

Julie, suffering from Fibromyalgia and three herniated disks, has also developed a sleep disorder and depression due to the pain. She won her tribunal on the 27th of February, then received a letter on March 20th informing her that she would lose her benefit on April 30th due to the changes; she is living with a partner who is earning £800 a month, so they lose £400 a month because she's been claiming for a year already. They put her through the tribunal for nothing, wasting her time, causing her a great deal of stress, and wasting tax payers money. She took an overdose at New Year because of the stress. She states that it's humiliating going through the motions.

"This is just .. the red tape, knowing I've got to go to court again. The lack of help and understanding I've had from certain areas of Job Centre Plus, especially the appeals section. Given duff information, being spoken down to, just not knowing if I'm ever going to get money again. If that happens, what do I do then? I'm struggling really hard to go on, and fighting all the time, but that's all you can do really."

Richard is a carer for his wife, who suffers from asthma and arthritis. She has been found fit for work despite being unable to use her hands. As such they have been placed on joint Job Seekers Allowance, presumably replacing sickness benefits and carers allowance. Despite raising their grandchild they receive only £105 a week on which to live. They were docked a months pay when Richard missed two appointments with the Job Centre due to medical emergencies with his wife. In the clip he shows that his electricity metre has only £3.99 left on it, which he says will last until Saturday. He won't be paid for another week and a half. Opening a cupboard he shows that he has a few tins of beans, explaining that it has to feed three people until they're paid, but states that they're lucky as some people don't even have that.

"It's a fine art to survive on the bare minimum. Once these sanctions come into place and they take that away from you, you've got no chance. I'm at boiling point. I'm at going postal point, you know. Honestly, it's up to that point now, where I want to scream and shout at the top of my voice and nobody's listening. I'm a positive person. I always try to look on the bright side. I've always made the best of what I've got, you know, and to be in the situation where I'm losing control of my marbles, so to speak, is not something I'm used to, and it's not something I enjoy doing."

David Cameron stated "If you're vulnerable and in need we will look after you. If you hit hard times we'll give you unprecedented support."

He lied.

"A DWP customer recently attempted suicide. This was said to be the result of receiving a letter telling him his Employment and Support Allowance was going to stop."

"A DWP spokes person said "It remains rare to find incidents of self harm where the benefits system is said to be a factor, but we are not complacent when it comes to ensuring that our staff can provide the right support and help to those affected. We ensure our staff are highly trained and ready to help people, however vulnerable they may be and whatever pressures they face. We have worked hard and continue to do so, to improve the way the Work Capability Assessment works for those with mental health issues." "
I disagree. It is not hard to find incidents of self harm where the benefits system is a factor. It is simply a fact that the Department for Work and Pensions is not aware of it. My doctor was very aware of the stress this system was causing me last year. He saw the self harm injuries inflicted upon myself as a result of panic attacks I suffered when trying to complete forms for Employment and Support Allowance and Disability Living Allowance. I personally know dozens of people under going this stressful process. I know that many of them simply cannot cope with it. I am certain that many of them, too, have self harmed. Self harm is not something that is easy to discuss with ones friends, or personal professionals, let alone disjointed professionals such as our MPs or an Atos assessor. When being assessed for ESA or DLA, why would we think to mention that we wish to commit suicide because of the process we are undergoing at that very moment?

It aggravates me that the DWP representative states that they "have worked hard and continue to do so, to improve the way the Work Capability Assessment works for those with mental health issues." They completely fail to appreciate that it is their Work Capability Assessment that is causing many people mental health issues. I had no problem with depression at the time I started to apply for Employment and Support Allowance. I have been struggling with it ever since.

And I know I am not alone.

I think it is time that we told them. I think the government is delusional. They have their heads in the sand. I am well aware that they suffer from a bad case of 'only hearing what they want to', but if we do not all speak up, then they simply cannot hear us. We cannot complain about their ignorance if we do not fight it. So let us all be brave. If you have self harmed, or you have considered or attempted suicide as a result of the stress caused by the Work Capability Assessment process, or anything related, please please write to your MP and tell them.

Wednesday 20 June 2012

Make ME Crafts


"All our products are made by M.E. sufferers and their friends/family with profits being donated to 'Invest in ME' to help fund a UK M.E. centre for biomedical research and treatment.

So, whether you're looking for a special present or fancy a little treat for yourself, check out our fantastic gift ideas and join with us to raise much needed funds for a great cause."

I think this an absolutely awesome idea. I am so happy to see a way for people with M.E., not only to express themselves, but to make a little money doing so, AND to contribute to an M.E. charity whilst doing so. One of my biggest frustrations is that I simply cannot donate to all the M.E. causes I see on the groups.

I used to make jewellery. I stopped doing so a year or so ago because I became disheartened at the fact that you simply cannot make money selling it in the UK. If I'm able to sell it through this website, making back a little of the money it cost me to make, then I'm all for it. It just means I have to motivate myself to actually start making things again.

Monday 11 June 2012

Journey; Part 1

Two weeks ago I invited you to start a journey with me, in my attempt to recover some money from the DWP.

Today I made my first move. I telephoned the DWP to ask them whether my claim had been Income Based ESA or Contributions Based ESA. I was told that because the claim is now closed they cannot tell me. It will not tell them that on the system. As such I have to write to the DWP and request the information. The lady I spoke to could however tell me the dates of my claim and that when I originally made the claim I applied for Income Based ESA.

As such I have written a letter, included a stamped self addressed envelope, and will post it the next time I leave the house.

The way their systems work seems very strange to me. This is not the first time I've discovered something strange like this. I found a few months ago that you cannot change your address with the DWP when a claim has closed. So they sent a letter to an old address of mine asking me to go for a medical assessment, and then another telling me I had automatically failed since I hadn't turned up. Surely, if the claim was closed I should not need to attend a medical assessment; if it was not closed they should have been able to change my address and send those communications to my current habitation. This however, is not relevant to my current endeavour ...

Petition re Benefits

If you click the title it'll take you to the petition. I'm not entirely clear on what the petition is trying to achieve, but I agree with what it says, and if there's any chance of it making a difference I'm all for it.

In the name of austerity, the UK Government is slashing benefits which sick and disabled people rely on to be able to function in our homes and communities. The results are truly horrific.

Jamal died within 3 weeks of undergoing an assessment where he was told he was fit to work. He was not the only one. Other people's conditions have deteriorated badly from the stress of it all. And those of us who have not yet had to face these assessments live in fear.

Lucy was stripped of her benefits by ATOS (the company paid millions to cut the welfare bill) and before her appeal could even be heard, she had lost her home. Too many people to name, with mental health problems, have committed suicide when they have been told they are fit to work; some just on receiving the letter telling them they had to go for an assessment.

Andrew’s MS caused him to lose his job and though he went on re-training courses, he couldn’t find another, because his hands had gone numb. But ATOS found him ‘fit to work’ and now he has no car, next to nothing to live on and no way forward.

Jenny lives in remote rural village and depended on her car to reach local shops and her friends. But she was told she no longer qualified for mobility benefits and her car was taken away immediately. She was stranded, with a wait of many months before her appeal could be heard. Even if she is successful, she will have to apply and pay for a new car on the Motability scheme.

The biggest tragedy of all is that society will no longer be able to benefit from our skills, experience and insight. Amongst disabled people there are talented artists, scientists, researchers…you name it, all wanting to contribute.

I was lucky, because I had the support of benefits, in particular a car, all my adult life. It meant I could go to university, gain professional qualifications and become a respected consultant and trainer, in demand nationally. It meant I could pay taxes!

If you think that is how it should be, NOT being reduced to utter dependency, please sign this petition. The current situation must not be allowed to continue. Together, we can force the government to rethink these harsh and unnecessary cuts.

RIP Karen Sherlock

From one blog to another, please click the title to go to the post I'm quoting. I don't feel it's my place to write about anothers death. It makes me everso sad to learn of it though.

"Karen embodied our fight in almost every way. She was desperately ill. Her kidneys were failing, putting a huge strain on her body. [..] She spent her last months fighting for the "security" of £96 a week and the reassurance that it couldn't be taken away."

Sunday 10 June 2012

Severity

I find it very hard to identify how severe my M.E. is. I have read and been told that there are three severeities:
- mild M.E.
- moderate M.E.
- severe M.E.

I had always assumed that I was a mild case, since up until the last couple of years no doctor had ever taken me seriously, made an effort to make me better, or made an effort to help me see a proper specialist. Over the last few years two of my friends have seen specialists. Neither of them were as ill as I was, yet both were identified as being 'moderate' cases of M.E.. I actually felt hurt, as if they had been mis-labelled, rather than I was underestimating how ill I was, and this somehow felt as if their specialists (who obviously had never heard of me) were telling me that I was not actually ill.

For most of the past decade I have sort of muddled along. From 2001 to 2010 I was making a very very slow recovery. At the beginning of 2010 my body was finally asking me to exercise again, so I was attending the local recreation centre embarking on an exercise program with the help of one of the fitness instructors who had previous experience with CFS. (Funnily enough he was at university with me). In June of 2010 I became ill, I developed pneumonia, and became so ill I could not get out of bed. Despite the pneumonia clearing up my body would still not accept food properly until early December.

Despite being so ill, I did not consider myself to be a severe case. I genuinely thought I was going to die, yet I thought that if I was trully that ill someone would at the very least have hospitalised me. As such, surely I was mistaken, I obviously wasn't as ill as I thought I was.

I recovered. Then at the beginning of this year a cold started me relapsing, and a reaction to mould pushed me over the edge into bed again. It was not as severe as my previous relapse, but it caused severe depression. I've been on suicide watch for the last few months.

And yet I still do not consider myself to be a severe case. Four months ago I could not have walked up a flight of stairs without pausing, yet now I can walk up and down the road without any M.E. related problems. It is very confusing to vary so spectacularly within such a short time frame. How can I make judgements over how ill I actually am when things change on a daily basis?

It was when I attended the specialist unit a couple of months ago that I started to see the reality of my situation. The doctor I saw was new to the unit. She asked me how long I had been experiencing symptoms. She asked me to describe my symptoms and the problems they cause. When I answered her that I had been ill since 2001, and could not remember what normal was like so have difficulty describing the symptoms, she was uncertain what to do. She told me that normally they see patients who have been experiencing fatigue for six months. She called in a more experienced doctor, and between them they told me that because I have been ill for so long there is probably nothing they can do for me.

I was extremely upset. I felt at the time that they were almost saying it was my fault that I had not attended the unit 11 years ago. They said they would try to help me anyway.

The first course of action was to test my adrenaline levels. They tested six of us at the same time. Listening to the other five patients left me feeling very demoralised. All of them had had to take time off work to attend the hospital. They all worked full time. Three of them had families. Their general complaint was that they were so exhausted when they got home from work that they didn't have the energy for a social life any longer. I hope that the unit can help these ladies. I hope that none of them go on to develope full blown M.E., and that this is just a blip in an otherwise healthy life. I am very happy for them that their doctors recognised that they have a problem and sent them to the fatigue unit. I do hope also though that none of them go away telling people they 'had' M.E., and recovered from it. (I'm definitely leaning towards believeing that CFS is not M.E., but M.E. is the most severe form of CFS).

I didn't dare to tell any of them how long I had been ill for, or try and partake in their discussions. I felt out of place as I could not relate to their world of work and families. Nor did I want to scare any of them into thinking they could get as ill as I am.

That is when I realised that I am a more serious case. "As ill as I am." I am ill. I have been for a long time. I should have had help years ago, but it was never forth coming. This is not my fault, but the downfall of many NHS doctors.

I think I went from being a mild/moderate case in early 2010 to being a severe case, within the space of a few days. I think I am now a moderate case. I think it is important that I recognise how ill I am, that I stop denying it, so that I can make progress.

This post is purely me meandering over things in my head. A post on one of the Facebook groups lead to my writing this today. A member who is very obviously a severe case of M.E. posted about a difficulty she has been having. Someone else replied to say that she does not allow M.E. to stop her. "If you aim high you can achieve anything." Obviously, I do not know this person, so cannot judge them, but my experience of M.E. is that it DOES stop people doing things, in a very major way. Unlike my fluctuations, there are so many people on the groups who are constant severe cases. It makes me realise that even within the M.E. community people find it very hard to grasp the varying severity of this condition. And also seem to find it hard to grasp the difference between fatigue problems and M.E..