Another epistle to the Romans

I started this blog post ages ago but couldn't finish it. Why? Because I simply couldn't write anything else. The strain of having to write it, both physically and mentally took a huge toll. I received my award letter a couple of days ago so it seems as good a time as any to finish it.

I have finally finished writing the epistle to the Romans that is completing a Disability Living Allowance (DLA) form. Some 40 pages long with some 63 different sections to complete, it is sadly a necessary evil to receive DLA and at which level. They can also call you in for a medical and request further information from your GP or consultant. There are two tiers for mobility and three for care.  It is an extremely stressful and tiring process which has caused a massive flare in my arms, particularly the left. lt took me a month to complete it, doing as much as I could each day. It's hung over me constantly, a weight round my neck. Why you might ask? It's simple. The money I receive is vital to our existence, it helps pay the bills and feed us. If I'm turned down I have absolutely no way of replacing that income. How could I get a job when I need help to do the simplest of things like get out of a chair?

The final word count was circa 17,000 words. Of course none of the boxes were large enough for me to explain properly so there were something like 18 overflow pages. I also included some 16 other documents ranging from medical reports, sharing agreements (Occupational Therapy trying to help you by putting in aids which mostly don't help as my needs don't fit into their boxes) ill health retirement award letters . There is so much repetition from section to section because some actions (such as being helped out of my chair) form the starting point for so many other things. To ensure the decision maker at the DWP gets a full picture the only way that you can show just what's involved is to spell it out in detail. Going out for example involves so many different actions we have to complete before I can even get to the car (help with dressing, help with getting up, help to get to and use the commode to name but a few). Everything down to the minutae is included, leaving no room for any doubt of how I live. In all it's degrading glory. Don't get me started on why I have to fill in another form (albeit for a different benefit) a year after I filled in the ESA form. It seems too much to ask that these different departments talk to each other. In this day and age it beggars belief really!

I'm lucky that I can still write in-depth and articulate reports when I need to, albeit incredibly slowly. There is an obvious difference to the format of the form since the last time I filled one in, back in May 2009.....tick boxes. Lots and lots of them. You could just tick the boxes that apply to you, write the name of your condition in a table together with the medications you take and send it back. But does this approach guarantee that they are getting the full picture? Of course it doesn't and most surely mean that lots of people are not getting the reward they should. This . raises several questions?  What happens to those people who can't write like I can? Those who can only tick boxes because they might have learning difficulties or simply don't know what the form is asking them? Or have mental health issues which make writing about their condition worse? Why is there no longer a specific box where you are asked about the condition you suffer from and how it manifests itself? Is there a hidden agenda, a checkbox doesn't give the full picture after all does it? A person may have problems which would put them in a higher tier but they haven't elaborated, just ticking the box that is the nearest match? After all the Government has cut the welfare budget by £20 billion with more to come. They have to do this somehow or am I just being skeptical? This goes some way to explaining why some 40% of rejections are overturned at appeal. Because the person can describe their situation better picture or have someone with them to speak on their behalf.

I firmly believe that the amount of help Eric has to provide would warrant the higher care component. Just what is expected otherwise tell me, what else would he have to do? I subscribe to the excellent benefitsandwork.co.uk website. They recently sent me an email about Personal Independent Payment (PIP) which is the Government's replacement for DLA. This doesn't work as a form as such but seems to require you to 'tell them about your situation and how it affects you?'. If that isn't a method designed to fail people I don't know what is. And the figures seem to justify my point with only 37% of people being awarded it. Bearing in mind that the fraud on DLA was only 0.5% how can it possibly be so low? Well, I reckon the Government has managed to move the goal posts suitably so that it is nigh on impossible to get it. Easy to do, and they will insist on taking ever more billions from the DWP budget. Easy fodder the sick and disabled. We don't have the energy to fight back do we? Ah, but we can vote and I know it won't be yellow or blue that's for sure....

Back to my application. I recieved a letter Friday before last saying they'd received my form on 20th February. At least they'd got it. I didn't hold my breath as to when I would next hear from them. Imagine my surprise then when I got a phone call last Monday (3rd March) asking me how long it had been since my condition had progressed to how it is now. 'A couple of years' was the best guess I could come up with. 'That's fine' she said. 'We have to check timescale when a change occurs to ensure it's been 3 months'. 'A decision will be made this afternoon and a letter will come out to you in the post'. I asked if she could tell me what the award was which she couldn't. She did say it was 'favourable'. A couple of days later the brown envelope arrived. Higher rate mobility and higher rate care, both for an indefinite time. The relief was enormous and it was great to see that Eric's care has been recognised as the care component has increased from middle to high.

It's a strange feeling when you get the highest level of an award you can get. Initially I was delighted and relieved. That source of income is secure and will be until they migrate me onto PIP whenever that might be. It wasn't long though before I reflected on the speed it took for the decision being made. They include a list of reasons to show why you've been awarded the levels you have. This stretched to 2 pages, listing item after item that I can't do or need help with.  It's really sobering that my condition is so bad that dealing with my application takes such a short time. The same was true for ESA as well. And it will be for PIP migration as well, hopefully! There are so many people out there who have a huge battle in getting the award their illness / disability that they should. From the stress of a medical to the appeal process, it sounds truly awful.

It's good that something hasn't been a battle for once. That said I wish I hadn't had to apply in the first place way back in 2006. Contrary to what the Government would have the public believe, the vast majority of us on sickness related benefits would give anything not to be sick or disabled. Why would anyone choose to live the way I'm forced to because of CRPS? There will always be some who try to fiddle the system. Any system. To tar us all with the same brush simply isn't fair and very wrong. Painting a section of society as 'scroungers' is wrong on so many levels. But to pick on those least able to fight back is cruel and despicable.

Peering into the abyss...

Our worst fears have been realised.... it is CRPS causing the ongoing problems with my arm.

The most recent photo of my arm

I went to see the Physio again on Monday, armed with my pain diary and several photos we had taken during the time since the massive flare caused by the exercises/massage and the appointment.

The photos had been a huge shock to me, because I can't actually see the side of my arm, so had no idea just how bad it was. The symptoms of CRPS were clear to see. Swelling, colour and temperature changes plus a shiny sheen to the skin. Add this to the throbbing pains despite 50mg of morphine flowing round my body 24/7 and it was pretty damning. The Physio confirmed it, saying there was no way the symptoms could be explained by an injury. Especially as this has been going on since March if not earlier. Where we thought he'd found something wrong, the reaction to the treatment was over the top in the extreme.

He is going to write to my Pain Consultant urgently to refer me and hopefully they will get me in quickly. Not holding my breath though after being told I'd have to be referred as a new patient when I contacted the Pain Clinic direct (see previous blog post). I can only hope that I bypass the new patient pre-assessment for which there is a huge waiting time by virtue of the fact that the Physio has already examined, tried to treat and diagnosed CRPS in my arm. I do have the certainty of seeing my Pain Consultant in September/October as I see him every six months. Even this means yet more waiting, time which I can little afford to lose. If you stand any chance of getting CRPS into remission it needs aggressive treatment within the first three months of it starting. Anything after that and you are starting to fight a losing battle. Which is why my legs are as bad as they are. I was nearly six months before we got a diagnosis and it had already moved into the other leg and up to the knees in both.

Of course the difference this time around is that I know my enemy intimately. I am already taking appropriate medication for CRPS because of my legs. OK, they don't do a lot but any help is better than nothing. The critical thing in fighting CRPS though, is to keep the mobility, the range of movement and the use of the affected area. So much of the time before my legs were diagnosed was wasted, I was told to rest as they didn't know what was going on. Totally the wrong thing to do, as I now know to my cost. Every moment of rest let CRPS get a little worse, increasing the pain which in turn made it ever harder to do anything with my legs. I can't push through the pain at all, it is just too bad. Being realistic, the CRPS was so aggressive in my legs I doubt we could have kept it at bay, restricted it to one leg or stopped it moving upwards. But there would have been a chance, however small.

Which brings me back to my arm. Ever since the x-rays came back clear in late April/early May I worked really hard and got back the full range of movement in the shoulder and upper arm. Purely and simply by doing things with the arm regardless of how much it hurt. Pushing through the pain, refusing to let it stop me. Of course the pain never went away, it was and is always there in varying degrees but when I first saw the Physio he was extremely impressed with the 'superb range of movement' I had.

With the benefit of hindsight, trying to treat a problem with the deltoid tendon was the worse possible thing we could have done. After a few days I couldn't do anything at all with the arm, it was horrendous. It felt like I'd lost all the strength. I couldn't stretch it out sideways, forwards, lift it up or anything. The pain was completely off the scale, Oramorph didn't help, I could do absolutely nothing for myself. It was like a massive CRPS flare, which, looking back, is of course what it was. The exercises were stopped and I was told to completely rest it. No archery, no moving the arm above shoulder level. For the next day I could do nothing else but rest it and it settled a little. Me being me, over the next couple of days I had to gently try and move it a little bit. And then a bit more. I started to get the strength back (which of course I'd never lost, I just couldn't use it because it hurt too much), could lift my iPad up for example which is on the table next to me and it was a bit better when Eric helped me out of my chair (I push up whilst he pulls).

Of course I had to do some archery, if only to see whether I could still do it. So a week after stopping the exercises I shot two dozen arrows. Completely pain free! It was a wonderful feeling and seemed to improve the arm if anything. Meanwhile resting it just increased the swelling, the colouring and of course the pain in the arm. Should I do as the Physio advised and continue to rest it completely or do what I felt I should do, namely keep it moving? Of course I did what felt best and so worked on pushing through the pain as I had before. Which is where I am now as I write this. The arm still constantly throbs, becomes worse when it's moved and recently hurts more when exposed to airflow (not very helpful when you have a fan on because it's so hot).

The reality of having CRPS in a third limb has sunk in a bit and I'd be lying if I said I didn't feel a bit fearful of what the future will bring. What if it continues to get worse or moves down the arm? Moves to the other arm? Life is of course going to be harder because I can't support myself as I could, I am ever more dependent on Eric. I am more restricted in what I can do, for example gardening. I used to do loads of stuff in the raised beds, will I still be able to carry on doing that? I worry even more about my weight because I am less active than I was and can't see a way of doing anything about it. Using the Wii to play tennis is out, too much for the arm. I can't believe my luck that archery seems to be the perfect activity but how long will that last? Will archery become impossible at some point? When I eventually get to the pain clinic will they be able to do anything with the arm (nerve blocks etc) bearing in mind everything failed miserably on my legs?

I could go on, but what's the point? It doesn't make my situation any different, so it's a waste of energy. The future will bring what it will. No, I have to concentrate on what I can do now, the positives. Continue to push through the pain, fight to keep the function I have in the arm, the range of movement. It will no doubt flare just like my legs do, but since when has that ever stopped me?  I will do everything I possibly can to keep the CRPS at bay. Continuing archery is a given. Of course!
Come on CRPS, do your damnedest!!!

When you think it can't get any worse....

Today we had the Budget. This Government claims that we're all in this together. I'm sorry but it really doesn't feel like it from where I'm sitting. My last blog post dealt with the Welfare Reform Act, and how genuinely chronically ill and disabled people are being assessed as fit for work when anyone other than ATOS and the DWP can see that it's completely impossible. Today another friend of mine had to attend an interview with the now infamous a4e. She was placed in WRAG and they have been constantly contacting her, demanding what she was doing about getting interviews, doing voluntary work. She is taking her case to tribunal, but the wheels still grind regardless. All under the constant threat of sanctions of course. She has enough to deal with just trying to live with CRPS, plus depression, migraines and anxiety without the additional stress and worry brought about by jumping through the various hoops the DWP have set in place.

As soon as they could see her, talked to her and discuss her medical problems, her interviewer was very sympathetic and made it clear that she shouldn't have been sent and should therefore appeal against being put forward for courses. Commonsense prevails you'd think. Alas no, because my friend's response was 'what is the point when it's mandatory? '. The Job Centre Advisor didn't want to send her but had to because of the rules. So instead of leaving her CV so she could presumably be placed on appropriate courses, she left the medical reports from her GP, Pain Consultant etc.

What's so frightening about all this is that you no longer seem to be treated as a human being. At best you're a scrounger, at worst you are an inconvenience to society, the taxpayer. Someone to be pushed through a system, with the ultimate goal of saving money. Reducing the numbers and hence the amout paid out.

They've already decided that some £18bn too much is being paid for Welfare. Today George Osbourne announced that another £10bn needs to be saved. It was terrifying enough before facing transition fom IB to ESA and DLA to PIP. How can you possibly believe that you will be assessed based on your medical problems and disability when the system they've set up is geared to reducing the numbers claiming and ultimately saving enormous amounts of money? Ironically the same Budget passed on tax savings in the region of £40,000 to millionaires. Oh and froze the tax allowance of people 65 and over so that they will lose money. Funny way of all being in it together?

Sure there are scroungers out there, and they need to be dealt with, got back into work. But what about people like me, who can never hope to do any sort of work ever again. People dependent on that money, and have paid NI contributions under the assumption that when we fall on hard times the State will look after us. If, and God forbid it happens, 'they' decide that I am fit for work, I simply have no idea what we will do. I have no way of replacing the money I would lose. No way of paying for anything, the house, food, fuel and everything else.

I didn't ask to become disabled, nobody does. What sort of society treats people like this?

Frightening times ahead...

Before I go on, let me make it clear that I am not left wing, right wing, or anything in between when it comes to politics. Like most people I read about what's going on, take a mild interest in the laws that are being passed. I always listen to the Budget to see how it affects us. Of course we all have opinions on whether a particular law is good or bad, but as a general rule, it doesn't have a life changing affect on your life. You get on with life as normal. The Welfare Reform Bill currently being forced through (now passed into law) by the Coalition Government completely blows that philosophy out of the water. The more I read the more shocked, appalled and saddened I become. It beggars belief that in the 21st Century some of the most vulnerable members of society, disabled people like myself, are being branded scroungers, the lowest of the low with no place in normal society. They claim we are a drain on resources, like leeches, taking money from the tax payer for no reason other than we can't be bothered to work.

Prior to developing CRPS I had spent many years working full time, paying my taxes, NI and pension contributions. Not for a second did I think I would be struck down, my life turned upside down, changed forever. I never thought I would become disabled, well you don't do you? Never in a million years did I think I would be totally reliant on someone else for everything. I can't get up without help, can't get dressed without help, can't prepare food for myself, can't bathe without help. Can't walk without help, can't leave the house without help, can't get in and out of my wheelchair without help. I could go on but you get the idea. Every facet of my life is now dependent on someone (namely my husband Eric) helping me, accompanying me and/or doing it for me. There is no spontaneity in my life. Life consists of a constant battle against everything that CRPS throws at me. I hate being disabled, no, I detest being disabled with every fibre of my being. I don't want to be and would do anything not to be.

The Coalition Government would have you believe that I am, like every other unemployed person in this country, a scrounger. Too many people are claiming sickness benefits when really they aren't disabled/ill enough to warrant it. They show examples on TV, people who claim they are unable to walk yet manage to run marathons. People getting every benefit under the sun, receiving goodness knows how much. They talk about getting those who can work, back to work. They also talk about providing more for those who have genuine need. Don't get me wrong, I totally agree with the principle of weeding out those people who are playing the system, claiming money they aren't entitled to. In fact I have more of a vested interest than most, because these people give real disabled people like me a bad name. Unfortunately the main cruz of this reform seems to be more about cutting the cost of the welfare bill by however many billions.  Given that fraud for Disability Living Allowance is just 0.5% this surely means that they are going to refuse a large number of genuine claimants using their new criteria with all the fallout that will cause?

I am currently in receipt of Incapacity Benefit and Disability Living Allowance. Both of these have been re-branded as ESA and PIP respectively. I will at some point go through the process of being transferred to these new benefits. The criteria have changed, as have the way they are assessed.  As I said at the start the more I have read about the Welfare Refom Bill, the more concerned I have become. The adage 'scrounger until proven otherwise' seems to be the standard, whilst the process seems geared up to reject people, who are then faced with trying to appeal.

Incapacity benefit is just that, you either qualify for it or you don't. Simple. ESA has two levels, the 'support' group, which I guess is a direct swap for IB. Here you are declared unfit for work and get the higher level of money you can get. Incidentally it's less than you get on IB but that's to be expected. After all this is a money saving exercise. To get IB you had to get 15 points based on how well or not you could carry out various tasks. In other words I filled in a form, sent it off and waited for a decision. The first time round I had a medical as well. When it was due for reassessment I filled in another form, but wasn't called for a medical. I presume this was because the Doctor I saw said that he would state that I shouldn't be called back for a medical because it was inappropriate. Too much of an ordeal. I have looked at the criteria for ESA and I should comfortably get sufficient points to be placed in the Support Group. Nothing to worry about then, simple switchover? The reality seems to be very different, the more I read and talk to other disabled people on Twitter.

There is a second group of ESA, known as the WRAG. It stands for Work Related Activity Group or something like that. If you don't get enough points to go into the Support Group you get dumped into this one. There is also a cutoff below which you don't get ESA at all. In which case you are deemed to be immediately fit for work and have to sign on. The Govt would have you belief that the WRAG group is a really supportive initiative. They will help people who could work, if given sufficient support, back to work. A noble idea surely? Sadly not. Terminally ill people who have more than six months to live are placed in this group. People undergoing chemotherapy and other treatments for cancer are placed in this group. People with progressive and chronic conditions such as mine are put in this group. People with severe mental health problems are placed in this group. We are talking about large numbers of people, like me, who struggle to live, let alone work. Not scroungers, hypochondriacs, those who can't be bothered etc.

Let me give you an example. One of the good friends I have made on Twitter is currently seeing the full horror of this new Act. For obvious reasons I will not divulge personal or extensive details about her condition. Her case though shows everything that is wrong about the WRAG of ESA and the Welfare Reform Act in general. It also shows why there are terrifying times ahead for me and every other genuinely chronically disabled person. A combination of severe psoriasis and psoriatic arthritis (affecting 95% of her joints) has reduced her to being dependent on her husband for 24/7 care. Virtually housebound, her mobility, like mine is totally compromised so she relies on a wheelchair when walking is required. Her hands and feet are particularly badly affected. In other words living day to day is not only a huge challenge but a very painful one. She was working up until she became ill, is a Doctor of Psychology, and had paid all her contributions. ATOS, the new company brought in to carry out asessments for ESA and PIP stated on her report that her condition is progressive and she will never return to work. It would seem a no-brainer that she be put in the Support Group. But no, the DWP put her in WRAG. How can this happen? What happened to the 'we will provide more for those in genuine need' rhetoric? The mind boggles how they define genuine need if she doesn't qualify. She was also told not to bother appealing as it would make no difference.

To cap it all, she was contacted by the DWP a couple of days ago to be told that having been in the WRAG group for the maximum time allowed, her money will stop at the end of April. Miraculously cured and fit for work because the time limit has been reached, nothing to do with her health and completely ignoring the fact that she is now less able to work than she was when it was first awarded. What exactly is she supposed to do now? Reapply? Sign on for Jobseekers' Allowance? Or just do nothing and lose her only source of income? I could talk about PIP, the replacement for Disability Living Allowance but the same horror stories abound, with people being turned down when it is blatantly obvious that they should receive the benefit or at a higher level.  What civilised society treats people like this?

With me facing transfer onto both ESA and PIP at some point, do you now see why I find the future so terrifying?