Shame

I remember sitting in my bedroom as a teenager, and realising how fortunate I was to have been born into this country. We weren't starving, like they were in Ethiopia. We weren't at war, like they were in some parts of the world. We always had plenty of clean, fresh water available, and always had food on the table. Most people had a roof over their head, and those who didn't had help available. We had councils who helped people, unions that helped workers, there were safety nets in place for nearly every eventuality you could think of. We may be struggling in our every day lives, but we had it made! I realised this as a teen, and my ambition became to help people world wide who weren't so fortunate to have been born into a country like this.

Unfortunately, I no longer believe we are fortunate. I feel shame. Total and utter shame, at what this country is doing.

How much of that remains? When I try and tell certain people about the difficulties of being sick or disabled in this country, I frequently get a response along the lines of "At least you're not starving in Ethiopia". Why is it more acceptable to starve here?

Are people really starving here? YES! 

The government has pretty much gone out of it's way to eliminate any form of income for people who are sick or disabled, and have made it very difficult to get by for those who are simply working class at the minimum wage end of the spectrum. If you weren't born with a silver spoon in your mouth they see you as scum, and we are to be treated as we deserve! 

Take my own example. I cannot claim Contributions Based Employment & Support Allowance (CB-ESA), because the DWP (Department for Work & Pensions) paid my NI (National Insurance) stamp last year. Their type of stamp does not count towards benefits, only towards your pension (should you be unlucky enough to live that long). I cannot claim Income Related ESA, because I am living with someone who earns over £8000pa (the threshold is somewhere around 7000). His outgoings are not taken into account. So, the fact that his outgoings are nearly equal to his income is irrelevant. He cannot afford to support me. As such, I am currently living off hand outs. They won't last forever! There is no point at which I can suddenly claim CB-ESA, as while I'm in this situation the DWP pays my NI, thus cancelling out the possibility indefinitely. It also seems that I will be unlikely to receive DLA; the DWP are putting off giving me a decision month after month. My suspicion is that they are waiting for PIP (Personal Independence Payment); under which I definitely will not qualify. There are no other benefits available to me, no safety net to catch me, nothing. I'm not the only one, there are hundreds, probably thousands of people in this situation across the country. The inevitable is that these people will become homeless, probably starving to death.

DLA was never intended for people to live on. It was intended to be some money that helped disabled people live a normal life contributing to the community. Something those who designed PIP seem to have forgotten, despite it's all encompassing name: "Personal Independence". They have made it virtually impossible for people who are genuinely disabled, to claim. For example, one of the descriptors is that claimants be unable to walk 20m, where it used to be 50m. They have cut down the criteria similarly throughout the assessing process, and have taken out some things under which people used to qualify. They've introduced descriptors, suggesting it is now another tickbox computer based system, similar to that of ESA that assesses people.  So, unless you are wheelchair bound, and almost totally unable to do anything for yourself, you're unlikely to receive PIP. Genuinely disabled people will lose their DLA. For many this means losing their car; that is their ability to get to work. Similarly for some it's losing the money they use for public transport. For some it is money used to bring in respite carers. So many people will be very suddenly thrown into situations where life is totally unmanageable.

And yet suicide is illegal.

It isn't just DLA though, please do understand that. ESA has recently changed, making it more difficult to receive again. More changes are being brought in, in April too. At present, when you apply for ESA, if you are turned down you can appeal. You still receive some money (£70pw - the Assessment Rate) until your reconsideration, appeal, or tribunal are finished. The Assessment Rate is being scrapped. You will no longer be allowed to appeal straight away, but must have a mandatory reconsideration first. To be fair, many decisions are overturned at 'reconsidertion', BUT, the DWP has no time limit on how long their reconsideration's take; so people will be left without money indefinitely. They say that they will be processed as quickly as possible. 

No comment.

What happens when someone has no money? Probably first of all, they go hungry. The government has at least seen fit to open more food banks since they've been in power (that in itself shows us that they knew what they were doing to us); but the housebound and bedbound can't get to food banks! And what of those who have specific dietary requirements (I'm talking Coeliac, etc, not vegetarians)? The next thing that probably happens is being unable to pay the bills. The phone gets cut off, then the electricity and gas. Their landlord may be understanding to start with, but if they're sitting in his property not paying any rent, he's losing money, so at some point they get turfed out of their home. Homeless, starving, and ill or disabled. That's what our government is aiming for!

At the moment, most people can claim a Crisis Loan when they find themselves in that sort of situation (not I, due to the other half's income). So what's the government's next step? They're removing Crisis Loans too!

They're also removing Legal Aid for people going to tribunal over their ESA, DLA, or PIP, decisions. In case you're unaware, there is a long convoluted system involved here. If someone disagrees with the decision made on their application (which they usually do, since the DWP deliberately underestimates people's needs), they can appeal. The appeal goes through reconsideration, at which point it can be changed, but if it is not it goes to Tribunal. If they still disagree with the decision then they can take it to the Upper Tier Tribunal. At this level people really need legal advice, and preferably legal representation, if they want to stand a chance of winning their case (they put people through all of that, just for £90pw). And that legal advice will no longer be available; because the government don't want people to win! They don't want to spend their money on the plebs.

There's more. Much more. The so called "bed room tax" for example. I'm so sick of it. It has now got to the point where I think we'd all be better off in another country. If there was a country open to receiving us, I have no doubt that there would be a mass exodus of sick and disabled people from the UK.

I'm actually kind of surprised that there has been no attempt on the lives of any of the politicians involved with all of this change. Yes, by definition the sick and disabled would be unable to carry out such an act, but we're not the only ones who are totally incensed by it all.

I wonder whether they realise that they are backing everyone in to a corner. It's basically going to be a choice between a life of crime, a life on the streets begging, or suicide. All of which are illegal. I suspect it's the latter that they are waiting for, but I also suspect it's the life of crime that most will turn to.

If only they could talk

Last night I woke up with a shock when something very cold touched by nose. My head had slipped between the pillows, so my nose was the only part of me above bedding. Tinkerbell, one of my boyfriend's cats, was lying on my pillow with her nose touching mine. As I brought my hand up to stroke her she started purring enthusiastically, then turned her back on me when I returned my hand into the warmth of the bed.

Tinkerbell has somewhat of a reputation for being a difficult cat. The vets use big gloves to handle her, finding it amusing how feral she is with them. She's one of three cats. She spent her life growing up with two cats who were brother and sister, not from the same litter as herself. The two siblings always snuggled together. Tinkerbell was not allowed to join them. She was the loner.

When I joined the family I started talking to her with cat language. She responded immediately. My other half hadn't been aware of some of the nuances of what cat body language means. As such, no one had really 'talked' to Tinkerbell her entire life.

Last night she was trying to get close to me. Frequently, when my head is actually on the pillow, she will rest a paw on me, or even curl herself around my head. As she turned her back on me last night I realised that all she wants is someone to curl up with. This 'outdoor', 'feral' cat, just wants to be loved. I realised that she'd felt alone for ten years.

And my heart melted.

Vote for this please!

Dear lovely readers, please can you vote for this for my friend in a competition she's in. It's an over 60s art contest. She's submitted five pieces of work, four paintings and this sculpture. We're hoping we can get the sculpture a lot of votes.

You can place three votes; you get to say which piece of art you think should be first, second, and third place. Obviously I've placed all my votes on her pieces. I only request that you place one for this piece .. do as you wish with your other votes ... though there are hundreds of bits of art to go through!

To vote, enter your email address and a password. They'll then send you an email in which you click on a link to go and place your votes.

Pretty please :)

http://eacartawards.org.uk/picture-Ursula.aspx

Eek! My ESA50 form's late!!!

Are you filling in the horrible ESA50 form, hoping you'll be able to claim Employment & Support Allowance? Do you have that horrible big black line on the calendar looming imminently over you? Don't worry. You can rub that line out if you have M.E. or some mental health conditions (sorry, but I don't know which ones).

This subject keeps coming up recently. Mostly because people have still only been given four weeks to fill in their ESA50 despite Christmas and New Year being in the middle of it. A lot of people are running late with their forms and panicking. I knew I had read somewhere that people with M.E. needn't worry about late forms, but I couldn't remember where. Then I found that I had saved the information to my computer ... hoorah ... but doh! 

So, I apologise, I do not know where this information came from, but do please feel free to use it. Personally, I would not recommend running anymore than a week late with your form. If you are returning your form late copy and paste the information below into a document and submit it along with your form and a letter explaining your reasons for lateness.

DWP will insist that they do not give anyone a time extension for completing the ESA50.

This is contrary to their own guidelines. In a letter to the Countess of Mar dated 21 November 2011 regarding the Incapacity Reference Guide, and the flagging of ME/CFS along with mental health conditions, the DWP stated:-

"Therefore, for the avoidance of doubt I can be clear that the Department does not classify CFS/ME as a mental health disorder. The asterisk next to CFS/ME in the Incapacity Reference Guide (IRG) is not as an indicator of its classification, but rather to alert decision makers to the fact that a proportion of people with CFS/ME have symptoms related to altered mental function. Mental health condition and those that have mental function impairment as a feature are highlighted in the IRG so that appropriate safeguards can be put in place. These safeguards include not automatically rejecting a claim to benefit should an individual fail to return the related questionnaire, together with procedures for additional contact with the claimant during their application if required."

It may be useful to quote this to the DWP when you ask for an extension, in any case ensure that they make a note of your conversation on your records, or perhaps it is better to put it in writing to them, so that, if ATOS refer your case back to DWP as a non-returned form, then they should have to take this information into account before making any decision to end your claim.

The incapacity reference guide is here:-

http://www.hmrc.gov.uk/manuals/spmmanual/spm50600.htm

The correspondence with the DWP regarding ME is found here:

http://www.meassociation.org.uk/?p=9327

Should anyone know where this information came from, please let me know so that I can give the relevant credit.

YES!! Knighthood!

I'm writing just a short post today, mostly in reference to my most recent post. I provided you the link for the petition against Dr Wessely's proposed knighthood, should you wish to sign it, and explained why I find myself a little reluctant to do so.

Someone came up with a beautiful alternative. Well, they didn't intend it to be an alternative actually, they suggested both signing that petition, and ...  doing this:

Recommend someone else for knighthood.

As I understand it, when someone is proposed for a knighthood, they are compared with others in the same field who have also been nominated. I could be completely wrong in that, so don't quote me on it, but I think that is what I have read somewhere.

My immediate reaction was to suggest the wonderful journalist, Sonia Poulton, for her hard work writing about M.E., describing it's difficulties so perfectly within the public eye. She's become patron of the Cheltenham "Fibro, ME/CFS Babes & Guys!" group you know! I would also personally include her awesome work raising awareness of how screwed up the benefits system is. You can read some of her work:
here

here

here

and here

BUT, I have a sneaky suspicion that because Sonia Poulton is a journalist, she would not be considered comparable to The Weasel. In fact, she's raising awareness of how treacherous M.E. is, when he is (supposedly) performing research (and downplaying how serious it is). Plus, it is not just M.E. alone that he is being considered upon.

Someone else has suggested recommending Professor Hooper for knighthood instead. I felt a little embarrassed that I had never before heard of Hooper, so I did a little research. A few clicks later I had found that he has worked on M.E. (CFS) and Gulf War Syndrome amongst other conditions; so he is directly comparable to The Weasel. He is the Medical Advisor to the Grace Charity for M.E.; I would be very surprised if any M.E. organisation is associated with Wessely (unless it is one that he has created). Hooper has also stood in direct opposition to Wessely on his stance towards M.E./CFS, which of course will make him a very attractive alternative to many. I did also find, however, that there has been a review into him, and that there are also people who dislike him as strongly as I and many others dislike Dr Weasel. Personally, I don't feel that I have found out enough about him to recommend him for knighthood myself. But I would certainly say 'yes' he's a good alternative to ... you know who ... and that if you wish to recommend someone to be in direct opposition, then Professor Hooper is probably the right person for the job.

I, myself, think I will stick to recommending a certain journalist. I have a feeling she might turn down the post if she was offered it. That, however, would be as worth seeing, as seeing her receive it!

So, how do we go about recommending someone for a Knighthood? It's actually very simple.

Download the form from here.

There is a choice of format in which you can download the form. I would suggest PDF, as most computers have a PDF reader. You then print the form out, fill it in, and post it off to the address on the website. Couldn't be simpler, could it? Well yes, since the form is rather long and complicated. 

... and sitting on my desk still waiting to be filled in.

No Knighthood!

Strip Professor Wessely of his Knighthood!

"We the undersigned wish to make it known that we believe the award of a knighthood to the internationally maverick and outspoken psychiatrist Simon Wessely, whose views on several serious illnesses are seen to be patently wrong, and are widely abhorred by the experienced patients he purports to want to help, brings the whole honours system into disrepute, and should be withdrawn before the progress of real science, makes finally clear to all, the folly of his particular and peculiar sickness beliefs."

I have mixed feelings on this petition. I've not signed it, and I'm not going to.

I do not like Simon Wessely anymore than the next person with M.E.. I do not like his views, I don't like his trials, I don't like the way in which he's manipulated the medias view on our illness, and I do not like the way in which he's labelled himself as a victim because he's been criticised. Every scientist receives criticism; I've never heard of any of them claiming victimisation because of it though. Wessely is a nasty piece of work whose first priority is his reputation, and second priority is protecting his research. His patients don't even factor.

So when I see that he is nominated for a knighthood I am not happy. Not impressed. It shouldn't have happened. As it happens I actually like our Queen. She gives off good vibes. It's not her fault that she was born into monarchy. I certainly don't support the abolition of the monarchy. I feel very sorry for her that she has to be in the same room with The Weasel though. I would like to think that there was some chance of her doing the research behind knighthoods, but in reality someone else will do that. No doubt it Simon minions who nominated him. It certainly wouldn't have been any legitimate M.E. doctor, or an M.E. patient.

But I can't make myself sign it. Professor Wessley has gone out of his way to label people with M.E. as being crazy. He hasn't merely claimed that M.E. is a mental illness, but because people object they are crazy. He's over-exaggerated the number of people who complain, and the manner in which they complain. He overplays his hand. He knows he has more power than any of us will ever have. It must be fun to kick people when they're down.

I do not want my name associated with this petition. I don't want to be among those he sees as victimising him. I don't wish to give him that pleasure. He doesn't know me from Adam of course.

The fact that the petition is worded badly is besides the point. I could pick it apart easily, making it clear why it would never get anywhere, legally, but that isn't my point, unusually. The point is that the truth will out eventually. Wessely will be seen, by history, as a very nasty man. He'll be seen as someone who deliberately prevented very sick people from being treated. With any luck biomedical research will show this within our lifetimes, and have him called up on it. But again, not my point.

My point? What is a knighthood? These days it doesn't actually mean anything. It's an ego boost for him. It will mark him in history. And because of who he is, he will be remembered as being a creep. That isn't what he has aimed for, obviously, so by being knighted I feel he's stabbing himself in the foot really.

My benefit claims

I've been working on my own benefit claims over the last month or so; ESA and DLA. I have to say that I am sincerely disappointed with the DWP. Until now I had pretty much given them the benefit of the doubt; I thought that the employees were not to blame for how the system works, but as much victims of it as the claimants. Just part of the machine.

I can now categorically tell you that, sometimes, they do not even look at our application forms before making a decision. I realised after posting my DLA form that I had not signed it. I therefore fully expected it to be turned down, with a letter asking me to resubmit it, having sign it. However, what I actually received was a fail based on the medical assessment I had for ESA 18 months ago.

I will point out at this juncture, that the medical 18 months ago was over-turned immediately. It was wrong, the assessor had made unreasonable assumptions based on no evidence, which I clearly illustrated to the DWP as soon as I received her report. I received ESA from a reconsideration, and placed a complaint against the assessor to Atos. (Atos of course defended her).

While it is outrageous that they are using outdated evidence, that is not my point. Had they actually looked at my form they would have realised straight away that they could turn it down based on the lack of signature. They didn't look at it! That is disgusting. Do they have the slightest idea of how much effort, how much energy, how much blood sweat and tears, go into those forms? I severely neglected Christmas preparations because they expected the form back just before Christmas; my waking hours were utilised on the form (plural actually, as I had my ESA50 too). They obviously do not care. I wonder how many people are declined at this stage, not realising that their form has not even been looked at, and not aware that they can appeal. I wasn't aware that you could appeal the first time I was declined after all. No one actually teaches you how the system works.

I can't help thinking that it would save them money if they didn't faff around like this, playing silly buggers. If they actually processed peoples claims properly when they were first sent in, based upon their form and accompanying evidence, surely there would be less need for appeals.

Unfortunately, my experience with ESA is no better. In fact I think I would go as far as to say it's worse. It's a lot more complicated though, so if you cannot follow what I try to explain now, don't worry too much about it.

Whilst getting divorced in 2010 I applied for ESA over the phone. The DWP friendly telephonist I spoke with checked that I had enough National Insurance Credits to claim Contributions Based ESA. My ex had tried to scare me, telling me that I hadn't paid enough of them, which is why we checked, and why it is so memorable that I did have enough of them. (My ex was trying to scare me regarding money in a lot of ways). So, I applied for CB-ESA, got through the application process, and started receiving ESA basic rate.

At the beginning of November I moved into my own flat (call this location A), so changed my address over the phone with the DWP. A couple of weeks later in November I received my divorce settlement. I phoned the DWP to find out if this had any baring on my claim, as I had heard that it could do. I was told that I would no longer receive ESA payments, but that my National Insurance would still be credited. It's a shame that I did not know the system so thoroughly then, as what he told me was wrong and I would have recognised it.

In December I went to stay elsewhere (call this location B) while problems with my flat were sorted out, so I phoned the DWP and gave them the new address again. At that time I was not informed of any problems with my claim.

I moved again in March due to problems with location B, and location A never got sorted out (so call this location C). I contacted the DWP again to give them the address for location C. I was told that they could not change the address on a closed claim. I asked when the claim had been closed, and was told it had been closed in the November, when I had told them about the divorce settlement. I was astounded, as I had not been told in November that he was closing my claim, nor had I received any paperwork to that affect.

When I had returned to location A to check I'd got everything, I found two letters from the DWP; one summoning me for a medical assessment, and another telling me that because I had not attended the medical assessment my benefit would be revoked. They were dated February, and expected me to be at the medical a few days before I found the letters.

So they had screwed up:

• they should not have discontinued a Contributions Based ESA claim based upon a divorce settlement. Contributions Based ESA is not means tested.
• if my claim was closed in November 2011, and you cannot change the address on a closed claim, then I should not have been able to change my address in December.
• when my claim was closed, I should have received paperwork to inform me.
• if my claim was closed in the November, I should not have been summoned for a medical assessment in February.

So, recently, my GP gave me a fit note to cover me for two months. He wanted me to have some income. I wasn't sure what you do with fit notes, so I phoned the DWP to ask. I spoke to one of their helpful telephonists (as opposed to the unhelpful ones), who tried her best to initiate an ESA claim for me, but just could not do it. My record was screwed. Every time she tried to start a claim the computer gave her an error. She probably should not have told me that really. Anyway, she put a request in for me to be sent an ESA1 in the post so that I could fill it in manually and return it myself.

I received the claim pack for Housing Benefit.

I received the claim pack for Carers Allowance.

I received the claim pack for some Disability thing I've never heard of.

Eventually an ESA1 arrived.

On the ESA1 you have to decide whether you wish to claim for Contributions Based ESA, or Income Related ESA. Being aware that my record was a complete mess I thought I'd better check what state my National Insurance was in, so, again I phoned the DWP. I was given a different number to contact the NI Office. I spoke to a lovely man who told me that I have three years of Class 1 credits, should have no problem placing a claim, and that he was disgusted that I was having to do the DWPs legwork for them. 

So, confident that they'd screwed my record up enough for me to claim Contributions Based ESA, I ticked that box. Surprise surprise; I received notification back that I do not have enough NI to claim Contributions Based. I already know I can't claim Income Related because my other half's earnings are above the threshold, despite the fact that his outgoings don't allow him to support me.

I'm stuck in a rut. I have made my MP aware of the situation. She is trying to get my National Insurance sorted out, but I suspect that when it is sorted out it will still not be the right kind of credits to claim ESA. She has also given me a supporting letter for my DLA reconsideration, as she was already aware of my health before any of this happened. 

Over the last few weeks, working on these claims, I have found out a couple of things that people with M.E. may find interesting:

M.E. claimants, along with claimants who suffer from mental health conditions, are given time limit concessions. That means that they are expected to get their forms back a little late. The DWP telephonists aren't actually aware of this, so if you're phoning the DWP to inform them of lateness, you'll need to explain it to them. It's also a good idea to remind decision makers in a note with your claim. I wouldn't advise returning your form late if you can avoid it, and certainly not weeks late.

M.E. is assessed as CFS by Atos. The Atos guidelines for assessing CFS do not tell the assessor what kind of condition it is, but give them the choice as to whether they assess it as a physical condition, a psychological condition, or a mixture of both. Personally, I don't like this. M.E. is recognised by the WHO and NICE as being a neurological condition, with neurological indicators. The DWP is supposed to use doctor's to assess neurological conditions, but M.E. is exempt from this. I was assessed by a nurse. I know others who have been assessed by physiotherapists, health workers, etc. The reason for this is, apparently, that people with M.E. do not show neurological indicators. Well; I know I do. I also know that they are described in some detail on my form. As such I SHOULD be assessed by a doctor, but can guarantee I will not be. 

Honestly, it probably doesn't make any difference. I just feel indignant that M.E. is degraded in this way.