Employment Support Allowance- A Changeover

About 6 weeks ago Danni got the dreaded Brown Envelope of Doom from the Department for Work and Pensions explaining that because she was on Income Support and this was being phased out in cases of disability she would be expected to claim Employment Support Allowance if she wished to continue to receive state benefits. We had been expecting this- the current Government had announced that everybody would be migrating over this year- so it wasn’t much of a surprise when the letter arrived. Not long after (within about a week or so) the claim form arrived from Atos Healthcare (I am loathe to call them by their full business name, they do not care about your health one bit), along with the usual instructions (when it comes to ESA) that the form must be filled in and sent off within 4 weeks unless you have a very good reason for it not to be completed in this time.

To get some perspective to the size of the challenge that this posed, when we were claiming Disability Living Allowance at the end of 2012 it took us three months to fill in the form for various reasons, and that was with the help of someone who knows how to fill these sorts of forms in. The DLA form asks questions that are relevant to the reasons you would be claiming and has relatively few trick questions, whereas the ESA form has several cases of trick questions (The one related to how far you can mobilise is the example that sticks out in my mind) and you also have much less room to explain the reasons behind any difficulties and the issues that they make you face. The ESA form seems to have been crafted exactly to trick people into giving answers that would lead to a reduction or removal of support, regardless of the actual level of need of the claimant.

So, we had the form and 4 weeks to get it filled in and sent in. A challenge for a severely ill person and someone with attention issues. And then a disaster: My legs decided they didn’t want to be legs and I spent a good week and a half in hospital. Danni spent 2 weeks in a care home and so was unable to help me with the form at all during that time. So that’s half the time gone straight away. Add the days that I was panicking over it and as such totally unable to do any work for that reason.

It ended up that we realistically managed about 3 or 4 days of actual work on the form due to the combined issues caused by my hospital visit and the anxiety caused by having to get it done in such a short period of time. The government offer absolutely no help whatsoever for the practicalities of filling this form in, which only adds to the stress of it. This form is meant to be filled in by the most vulnerable in society, who can, in some cases, be literally dying of whatever it is that has meant they need to claim ESA in the first place. And that isn’t even the end of it.

Once an ESA50 (the claim form) has been sent in a few things happen. First your healthcare professionals are usually asked about your condition. Any supporting evidence is checked and then, perhaps the most terrifying part of the entire process: The Work Capability Assessment. Claimants are generally expected to go to one of Atos’ assessment centres, which can be incredibly awkward to get to, if it is even possible. Once you arrive, there is no guarantee that you will be able to get to the assessment room if you use a wheelchair, as not all of them have lifts. And then the assessment begins. The assessor will be reading off a computer, asking you if you can perform a certain set of tasks that they claim are relevant to your ability to work. These tasks usually line up with what was in the claim form, and there is a great deal of emphasis put on the tickbox nature of it, with certain numbers of points being awarded if you are unable to perform certain tasks. If you get a certain number of points, you get put into certain groups on ESA. If you don’t, you get spat out and told to either get a job or claim JSA until you do.

Now, this wouldn’t be quite as bad as it is if they actually stuck to what the tasks said and assigned points properly. It would still be bad, but not as bad as the reality. The reality has seen people who should be completely exempt from assessments being dragged in for them, and people who should have automatic entitlement to the highest rate, with no assessment and no pressure put on the person to even prepare for work (such as terminal cancer patients) being told that they have scored 0 points and thus will receive no ESA at all. The reality of people with fluctuating conditions getting nothing because the assessor had no idea what a fluctuating condition actually means. The reality of thousands of people having their benefit entitlements removed because the Government made the regulations even more strict than they already were. The reality of people dying because of the stress being placed on their bodies by the process. The reality of veterans coming home injured from military action and being refused benefit because their injuries aren’t exactly what lines up with tickboxes. The reality of the appeals system that is in such disarray because of the sheer number of incorrect decisions that it is totally unable to cope. All these are happening, and despite the insistence of the Government they continue to happen to this day.

The rhetoric that comes out of the Government is that there is nothing to fear from the ESA system, that everything will be fine for those that need the help. The truth is that the rhetoric is just that and that the people who need the help most are often the ones that are having it taken away from them. This is why I have been afraid of the ESA changeover for months, and why I am petrified on behalf of Danni for what will happen over the next few months with regards to it. These words cannot do justice to the fear I have within me, knowing that the support that she needs could be ripped away from her by a computer and an assessor that is there simply to meet a target that the Government refuses to acknowledge the existence of, yet the same Government have already announced how many people are set to lose both ESA and the replacement for DLA, Personal Independence Payment, during the course of the changeovers between the old-style benefits and the newer ones. I am petrified, and if you know anyone that is sick or disabled, you should be too.

It’s Worse Than That; He’s Dead, Jim!

Don’t worry about the title, I’m not really dead or anything. This post is mainly about my current health, so if that stuff bores you, look away now.

So as of my last post I was on Mirtazapine. I came off this, and when I saw the GP she agreed. She also agreed to re-refer me back to the psychiatrist that diagnosed me with Autism a few months ago. Apparently the way my moods work is different and normal methods of just medicating it won’t work as well as having contact with someone that has a clue about how autistic behaviours work. This is an important thing, as (as you may have seen or heard in the past) my mood can be incredibly unstable. When I get depressed I often have a period of relative calm then a sudden drop, sometimes followed by suicidal thoughts. Last March this came to a head and I ended up in the local psychiatric unit. The psychiatrist will also take control of medication for that side of things for a bit. I’m not sure when my first appointment with her will be, but I wouldn’t be surprised if it took a couple of months to get the referral through.

I’ve also been having some breathing issues recently. I had an inhaler when I was much younger and obviously having issues breathing is not good, so I saw the GP about that too. She was really helpful, and I now have an inhaler for when it gets to the point of wheezing and also an appointment with the nurse that does spirometry tests to work out what’s going on. That’s not for a couple of weeks, though, and I’ve been told to just keep using my inhaler when I need it until then – I’ve been given permission to exceed the dose on the label if needed.

As if I needed anything extra to add on top of that, I have an eye test booked for Thursday! I was well overdue, so I figured I’d go in and get a test booked so I can see if they decide I need glasses again. If they try to suggest contact lenses, I’ll kindly point out I have no chance in hell of being able to put them in by myself and there is noone that is really able to help me with them. I don’t mind if I get told I need glasses again, despite refusing to wear them a few years ago.

Other than all of that, I’m feeling relatively fine! My mood seems pretty stable, with a few wobbles caused by anxiety and meltdowns. I’ve come to accept that anxiety is here to stay, but I still need to work on the meltdown side of things. Hopefully when I see the psychiatrist she’ll be able to help with that.

Um, Yes, Stuff Has Happened!

I haven’t written on this blog for a while so I have quite a lot to write about. I’ll split it up into a few paragraphs, one for each major thing.

I was put on Mirtazapine to try and help with my mental health issues a while ago. It seemed to work, my mood became better and I had less…spikiness. However, moving and not being able to register with a GP yet has meant that I’ve since run out. I’m starting to feel the effect of this…I’ll be fine, though!

The first bit of big news is that I finally got diagnosed as being autistic. I’ve not thought much about how to proceed now I have a diagnosis, but I’ll get there. I think applying for DLA may be a good next step, as I have difficulties in several areas of my life. That said, I am not entirely sure how to fill the form in. The psychiatrist I was seeing said she would get me in touch with a charity up here called Pathways, who help people with mental health difficulties with things like filling in forms and general support. So far I haven’t heard from them and it’s been over a month now. It’ll come when it comes, I suppose.

The other major news is that I moved house! Danni needed somewhere more level than where we were, so we looked for a new place to live, despite us loving the old flat. We found somewhere in central Gateshead and moved a couple of months ago. The new place is nice, though I need to finish getting all the boxes unpacked. Writing this blog post isn’t exactly helping that bit!

Danni is starting to do a bit better! We bought her a harness so she doesn’t have to worry quite so much about keeping herself straight in her wheelchair, and it’s meaning that she’s been able to go out much more than was possible before it. We’ve even been out for a meal or two, it has helped that much! Of course, she’s still having major issues with gripping things and the moment the harness is taken off she flops over, but we’ll take what we can get with these things!

And lastly, this weekend I’m off to London! I’m going to be meeting a bunch of new people, which is scary, but also seeing a few people I already know, which should make things easier. I am looking forward to it despite being worried about all the new people. I’ve been assured it’ll be okay. Danni’s brother will apparently be coming over to look after her, so I’ll not have that to panic about!

So, that’s a brief roundup of what’s been going on with me. Hopefully I’ll blog again after the weekend with how it went!

Mentalism & Me: Meds, Crisis, Assessment

On Tuesday me and Danni went to see our GP. He is nice. We told him about the side effects I was getting from the sertraline and the worsening of my mood and he decided to change my meds. He put me on mirtazapine, which has a bit of a reputation of making people crave carbs. In my case, I am craving…Chinese. Yeah. Ah well.
Wednesday the crisis team saw me. They didn’t feel there was a specific role for them but said they would liaise with Danni’s social worker to see if he could help. I may be getting some help with organising things, which would be good.
Finally, on Monday next week I have the psych appointment I have mentioned before. I found out it may be about my autism assessment, which is brilliant news. I just need to contact the parentals about that ;)

As for now? I’m feeling rather isolated. I want to go out and do things, but I can’t because I have responsibilities that I need to fulfill. Danni is asleep and I have no idea what time she will wake up at. Another issue is not knowing how to get rid of the feeling of isolation. My friends are all too far away to be easily reached :(

Mentalism & Me: Doctors

So I went to see my GP today. We discussed anxiety and the CBT not working. Even he doesn’t know what my appointment with the psych is about. He put me on different meds (sirtrazine, I think) and gave me some diazepam for when I am particularly bad. I like my gP. He listens to me and accepts what I have to say.

Proper blog post to follow, I’m with Danni in her Slimming World meeting at the moment.

Edumacation

So, I have been thinking about my education lately. As you may be aware I did a Foundation Year at Hull University in Computer Science, but things got in the way of that (my mentalism, moving in with Danni, etc). That was 3 academic years ago now and I haven’t done anything at all in the way of education since. This is also for a variety of reasons, but mainly due to two: the amount of care Danni needs and the fact that I require too much support to be able to do it alone.

Danni has been the worst she has been for a while. She lost control of her limbs totally last night and needed to be carried up the stairs and into the flat. I had to do this alone as there was no-one else to do it. My role as a carer is taking more and more responsibility, and of course this means I need to spend more and more time doing it. This means I would have even less time to pursue education. This is an issue, since the caring has led to me missing 2 years already and is about to make me miss a third.

The support thing is still something I am coming to terms with. I was described as bright (if a little lazy with homework and lacking in organisation) at school. When I was in Year 7 the school management was saying how I was a sure University student down the line. Yet here I am, stagnating and needing a push to get back onto the education ladder. How did this happen? Just how did I come to be so behind my peers, who have now completed their degrees and in some cases Masters.

The answer is actually remarkably simple: I didn’t realise how much support I actually need. I attempted to go it alone, as I always have. It served me well up until my GCSEs, then my grades started slipping. I was warned it would happen if I didn’t get homework and coursework in, yet I thought I was just being a bit lazy and not doing it because I couldn’t be bothered. Those thoughts are still there, but I am sure that if I had someone there to support me I wouldn’t have had as many issues with school and Sixth Form.

So I came out of Sixth Form with 2 full A Levels, one of them in General Studies which doesn’t really count. What did I do when I applied to Uni? Claimed it was stress. I didn’t have a damn clue why I didn’t do my work at Sixth Form, but I had to fob off the interviewer somehow. So, stress it was. No support was asked for, and I barely passed the foundation year in a subject which is, by far, my strongest.

Oops, I’m rambling off topic. Where was I? Yes, support. So, given support I reckon I could have a fair crack at Uni again once I’ve eased back into education. So, how do I ease back in? Step back a level. Easier said than done. I inquired about doing A Level Maths. The response was that I was too old. The college obviously doesn’t want the business…

So I’m stuck again. I am left with one choice, really: Open University. This would, obviously, require support (which I don’t have) and more structure than I can reasonably ask for in a day. Looking after Danni is hard work, yanno? One hurdle after another, I just can’t win.

The reason for the requiring support was alien to me until Danni explained it. She told me that she has noticed I seem to have issues with Executive Functioning. It doesn’t just affect education in my case, but seemingly all parts of my life. Housework, education, going to the shops…you name it, I have trouble motivating myself to do it. And then comes the anxiety that I get around doing things that I cannot see a logical process for. These things that I should find easy, like tidying the living room or deciding what I want to eat are incredibly difficult. This, of course, applies to education too, so starting on work is difficult. I get sidetracked and find it hard to start. However, when I get into it, there is no stopping me.

So, a couple of things need to happen for me to seriously consider going back into education. I will need proper support, whether it be from a mentor from the place of education or a support worker from outside it. I will need help for my caring role with Danni being the worst she has been in a while (more help than I am getting now, yeah, good luck with that). I will need time. Time to get myself back into gear and into an education mindset, so maybe a part time course would be better than a full time one. And, most of all, really, I need to get my autism assessment sorted (still no word on that, by the way) so I can more reliably explain what my needs are to people who do not believe that someone without a diagnosis can have the issues I do.

So, a rambly post on education. I hope you could make more sense of it than I could. Sheesh, my writing is getting worse and worse these days.

Mentalism & Me: I Admit It…

Danni and I have been discussing my difficulties over the past few days. She has informed me that because of the nature and severity of some of these difficulties that it would be a good idea for me to apply for Disability Living Allowance. This has been a bit of a difficult one to accept. It’s that word. Disability. I do not consider myself to be disabled, but at the same time I am coming to accept that I do have issues with day to day life that I need help with. When I was in Hull I struggled. I had nobody to support me so half the time I didn’t manage to eat, when I did it was either a ready meal or pasta with a jar of sauce and that would be it for the day. It got to the point where when I moved in with Danni I was about 6 and a half stone. I wasn’t taking care of myself at all and there I was, thinking I was okay. Plainly, I wasn’t. As I mentioned in my previous (private) post, I have had mental health issues of some description for a number of years now. I’m finally coming to the point where I am admitting I need help. The good news is I have an appointment with a psychiatrist coming up next month and a GP appoinment in a couple of weeks. Hopefully the combination of te two will help me deal with things a little bit better.
On a negative note, the CBT I was meant to be doing was a bit of a non-starter. I didn’t like the woman that I was meant to be seeing for it, she was patronising and treated me as though I was a child. I did not like that one bit. That said, I am getting help now, I hope it works :)

Protected: Mentalism & Me: Ups and Downs and Emotions

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Look, I Made A Blog!

So, it’s August now and a fair bit has gone on since I last posted anything here. I’ll split it into sections to make it easier for me to write.

Mental Stuff
As far as mental health things go, they are steadily improving. That said,I had my first 2 CBT sessions and, well, I cannot stand the worker that is meant to be helping me. I was anxious as hell when I went to the first appointment, which meant that I struggled with speech. She seemed to latch onto this and treated me like I was a 2 year old child. The only good thing that has come from it is that she has sent a letter trying to push for an autism assessment. Every cloud, yeah?
Also anxiety related, it is nowhere near as bad as it was last month. I can actually leave the flat on my own and am loving the freedom it gives me. Funny how things work in my head, I do wish I could just be stable for a bit and not have anxiety levels going up and down in a 3 month or so cycle.
Also, my mood is stable, which is of course awesome. I’m still having issues with my indecisiveness and getting started on things, but that’s something completely different.

Danni Stuff
Danni’s carers are erratic at best. On the days where we get “Favourite Carer” (Can you tell we like her?) it is not a big problem, but it’s the days where we have no idea who is coming or when because we don’t have a schedule and I’m struggling with the phone (yes, I still have that, I need to get over it) that are pushing Danni to the edge at the moment and causing her stress that she does not need. Even when we do get the schedule, sometimes the carers that arrive do not match and often arrive at totally different times to what has been said on the schedule. As you can guess, this is not good.
Danni also started Slimming World last week, so we are having a lot less takeaways and rubbish food. I’ve started cooking more exciting things! I’m also having to do a little bit of extra pushing so she can get to the meetings, but that is not a problem at all.

Other Stuff
I’m starting to look at new phones for when my upgrade is up in November. So far there’s a good choice of Android phones but I think I want to wait until then to actually  choose since there’ll be more, newer, faster ones released in that time.All said, though, I’m happy with the speed of my Desire now I have CyanogenMod on it and it is nicely slimmed down from the Sense rubbish.
I’m going to Manchester next week, for the TT-Forums meetup! We have arranged for Danni’s brother to look after her while I’m away, so I won’t have to worry about her all that much. Should be fun!
It was my dad’s 70th birthday on the 3rd, so we went down to Leeds in order to celebrate with him. We had a great time, though Danni overdid it loads.
It was our first wedding anniversary on the 13th! And where were we to celebrate, you ask? BarCamp! Unfortunately I got a 24 hour bug so couldn’t make the second day, but the first day was excellent – Powerpoint Karaoke and a Dr Horrible singalong in the evening, after a fantastic set of sessions from all involved. It was brilliant and I wish I could have made the second day.

All in All
So this past month has been a mixed bag – good in that my anxiety is better than it was and going to fun stuff is always good, but bad in that Danni’s carers are still not being reliable enough and me having a couple of really bad appointments with a woman I never want to see again. Oh well, I’ll take what I can get!

Mentalism & Me: Public Edition Part 2

I know, I know, I’m getting boring with the post titles. It’s relevant, though. That’s what matters!

So, as I mentioned in the previous post I’ve been having a few issues with my head over the past months. Well, it seems as though the depression has indeed left the building, only to be replaced by rather nasty anxiety. The pregabalin I am prescribed is having less and less of an effect on it and I’m getting – well, got to – the point where it’s making my life a lot more difficult than it would otherwise be. It’s making me less able to deal with emotions (I’ve basically lost it several times over the past month), Leaving the flat is difficult at best, impossible at worst and it’s putting a strain on things between me and Danni. All this and I’m petrified of seeing the doctor to discuss anything, since that involves talking to someone with no script.

That said, it’s not the first time my anxiety has been this bad. It’s the first time that I can’t identify a trigger, but it’s not the first time I’ve been this bad. I have had a telephone assessment with the community mental health team to see what they can do to help. They decided that CBT would be a good idea in order to tackle the causes of the anxiety. Unfortunately, I’ve been through several referrals for various things (Depression, anxiety, autism assessment) but as of yet none of them have actually come through and offered any sort of real assessment or help. It’s now at the point where if I were to get an appointment I may not actually be able to make it, since my anxiety is making it harder and harder to leave the flat. I am able to, but it takes a lot out of me.

So I’m in a quandry at the moment, Anxiety is leaving me as unable to function as the depression was and as unlikely to reach out for help as the depression was. The difference is I want to get out of it.  This time, I feel like there’s a way out, I just need to wait for it. Waiting…Ugh, I don’t like that.