Government backs down on some retesting for sickness benefits

Government backdown won’t apply to all but is an opening

The Work Capability Assessment (WCA) is highly damaging to those of us who have to go through it. Despite this, both main parties have consistently denied that there is any problem, and claimed that the WCA is necessary to weed out scroungers. That might be about to change.

Firstly, Labour announced at their conference that they would scrap the WCA altogether. This doesn’t mean much right now since they are not in power, but it is a major turnaround for a party that introduced the WCA in the first place and has refused to even oppose most benefit cuts in the last few years. Jeremy Corbyn called the WCA degrading. Debbie Abrahams acknowledged that it makes people feel worthless and dehumanised.

It’s not all good, since they still refuse to oppose benefit sanctions, and used the same old language about work being the goal for everyone, but it is a start.

Secondly, Damian Green, Tory Secretary of Work and Pensions, has told the media that the government will stop repeatedly retesting people who aren’t going to improve.

“If someone has a disease which can only get worse then it doesn’t make sense to ask them to turn up for repeated appointments. If their condition is not going to improve, it is not right to ask them to be tested time after time. So we will stop it.”

This is a huge reversal of policy. Continuous retesting was always the point of Employment Support Allowance (ESA) although there have never been enough resources to apply that to everyone.

Many people are celebrating this. However, there are big questions as the government haven’t specified any details. I’m not sure they even know yet. Reports imply that the exemption from retesting will apply to people with specific illnesses that are known to only deteriorate. If that is the case, then many people who have illnesses that are just as bad as those on the list but are not recognised as such, will miss out. So will people who have not yet been diagnosed, and that can mean people who are sick for years – or decades – before they find out the cause.

The more logical policy would be to apply this exemption to everyone who is in the Support Group, since this category is meant to contain people who have no prospect of improvement. In practice the Support Group doesn’t work like that, and people who will never improve are frequently placed in the Work Related Activity Group instead, thanks to DWP efforts to deny them support in order to keep costs down. If the exemption were to apply to the Support Group only then it would still be unfair to all those improperly placed in the WRAG.

Whether the Government decides who qualifies based on diagnosis, or based on support group, it will still be unfair. However, I do see this announcement as a big win. A Tory government minister said “constant reassessment is pointless” and “does increase their stress and anxiety levels” “causes financial insecurity” to describe repeated work capability assessments. That is a huge admission for the Tories, or even for Labour.

We can use this. We can attack the inconsistencies in the government’s argument. We can point out that the Work Capability Assessment is damaging to everyone. We can show that their descriptions apply to Personal Independence Payments too, even though they’ve spent six years attacking PIP’s predecessor, DLA as “abandoning” people so as to justify welfare reform and repeated reassessments. This isn’t an unqualified victory and won’t necessarily improve things for that many people (perhaps including myself) but this is a major event in the struggle against welfare cuts of the last few years.

What do you do?

“What do you do?”

The question I dread. The question I cannot answer. Not without losing face, anyway.

“What do you do?”

I sit on Twitter.

That’s what I do. All day. Mostly on a tablet. On a laptop or desktop PC when I am well enough. On a phone in bed when I am not. I’m there when I wake up in the morning. I’m there at 2am. I don’t really leave. I watch the stream of tweets flow past. And believe me, when you follow more than 3,000 people they really flow.

It fills the time between hospital appointments. The endless stream brings me news, jokes, struggles, friendship. It fills my browser with tabs to read. So many that I barely have enough time to look away from the stream to read them.

It’s not like I can do much else since I became too sick to work. Mitochondrial myopathy and a whole catalogue of other problems have robbed me of my concentration, my ability to go to my office, to talk, sit, walk or stand when employment demands it. I can’t do the things that employers are willing to pay for anymore, but I can tweet. And I do. A lot.

I still crave usefulness though.

“What do you do?”

I tell people what I think will make them see me as like them. As a productive member of society. I tell them I am an activist. A welfare and disability rights campaigner. I am, too. Twitter has got me involved in campaign groups, put me in touch with people doing anything they can to get the truth in front of media and MPs. Twitter has found me radio and TV interviews and eventually lead to me being part of a Judicial Review over PIP. Through Twitter I have listened to the despair of many sick friends when they try to get the help they are supposed to get. I advise them, tell them where to find the hidden rules, how to get help to get help. Through my own trivial tweets, I am told, I help others to realise they aren’t alone, that their illness isn’t imaginary. They have done the same for me. I have made people aware of injustice, of the fights against that injustice. I have shown them protests and struggles. I have done more than I ever did when I had a nearly functional body and brain.

But all of this takes a toll. I am not well. I am very much not well. Physically and mentally I struggle through every day, and these days, Twitter is an endless bombardment of despair. For me Twitter suffers from having split purpose. It is a space to meet friends, sure, but it is also a public speaking platform. It is a news stream. Since all my friends care about the horror of the world, even when I want to withdraw from that to recover I still see what they are talking about. Twitter is a place for intimate sharing, for larger social circles, for staying aware of what is happening, and for speaking out. The biggest problem comes when a tweet meant only for one of those purposes crosses over to the others. When a minor personal gripe to a close friend becomes an international phenomenon embedded in news stories everywhere.

Over the last few years my tweets have attracted attention. Not huge by media standards but still enough that I will often get 100 retweets on something I said. I am pretty good at accidental anger that people share and amplify. If I am on a roll I can have several tweets like this on the go at once and that makes my notifications… interesting. My tweets about illness attract replies from friends, of course, but also from more distant acquaintances. They often attract unwanted advice that is irrelevant or I have already tried and discarded years before. My political tweets often receive insults or abuse from right-wing people who have come across me being retweeted. The questions, advice, insults and abuse all make me panic and retreat from Twitter. Well, that’s not quite true. I have started retreating to a private locked twitter account which just a few friends are able to see. I don’t think this is uncommon either. Quite a few people have a locked Twitter account alongside their public one, especially people who aren’t straight white cisgender men.

Admitting to having a locked account will make some of my followers sad and for that I am sorry, but this raises another aspect that I am struggling with. I have been very open about physical and mental illness and as a result I have far more people emotionally invested in me than I could ever keep track of. I feel guilty about this every day because I wish I could return the friendship shown to me. Sometimes even the friendly responses are too much for me to deal with and so I have said less about personal things on my public account and only put a few of them on my locked account instead. When I finally managed to admit and talk about my gender dysphoria I did that almost exclusively on my locked account – which is messed up in itself because I have been unashamed of physical and mental illness yet too ashamed of my gender to talk publicly.

I am not sure if there is any solution to the problems I have mentioned. I am bad at segregating my tweets between accounts and in any case I feel useless when something I said could have helped someone else but stayed hidden away. I have thought about deleting my public twitter account but that would be a waste of something that can do a lot of good. I have considered unfollowing everyone and then adding back only a few people so that I see less awfulness but that would upset many people and not address the replies that I cannot deal with.

I am not asking for advice – as should be obvious if you just read this blog post. I guess I will continue with Twitter, continue to raise my voice about the problems that I see, because that is what I do.

“What do you do?”

I shout.

The Migraine Medication Decision Process

My decision making process for taking migraine medicine goes something like this.

I’m in a lousy low mood.

But it’s probably not a migraine.

Coffee hasn’t helped.

But it might not be a migraine.

My vision is blurred.

But it still might not be a migraine.

My head feels pressurised.

I don’t think it’s a migraine.

Computer screen is too bright.

I’m just tired, I doubt it’s a migraine.

Using black text on a dark grey background is still too bright.

It’s not a migraine!

I’m wearing sunglasses.

Migraine? No.

I’m hiding in a darkened room wearing sunglasses trying desperately to think or read.

No no no no no not a migraine.

It hurts.

I feel sick.

Coloured lights are floating across my vision.

I take Imigran.

Oh! It WAS a migraine!

 

Trapped

So many thoughts
So much I want to do

Fight the government
Save welfare and the NHS
Protect privacy and the right to protest
Write blogs about it all
Send a wake up call

I want to leave this bed
Travel to meet friends I’ve made online
Ride my motorbike again
Whizz through the countryside

I want to learn new technology
Go back to work
Make old computers work again
Be master of a server room once more

I want…
But no.
I lie here in bed
Pain
Exhaustion
A shower and some fresh clothes
All I can hope for today
Scream at the world
Silently
Through my smartphone

I am trapped
I am trapped

I hate telephones

DECT phone handsetI have always had a problem with talking on the phone, long before I ever encountered depression or anxiety as long term problems. People who know me might find that funny because I used to sell mobile phones for a living and I have had a smartphone since the days of the Nokia communicator. What they may not realise is that for me a smartphone is a pocket computer with an internet connection. I regard its ability to receive voice calls as an unwanted extra.

Unfortunately society demands that I do actually talk on the phone, so what is the problem?

Interestingly I actually find making calls for business or calls to services much easier than calls to friends or to people who I know outside of their job. When I worked as an IT technician, and before that selling mobile phones, I could quite happily phone someone to answer or ask technical questions, or to organise something related to work. I think this is because such calls have a defined protocol, a script. I know that I will go through certain phrases and steps in order. I can also call people who I talk to a lot such as my parents or my wife. The problem for me comes when I have to call a friend where there is no script or protocol. In such situations I don’t know what will happen or what I should say and my anxiety kicks in. This gets worse when I am unsure how well a person knows me, or if a person will recognise me or remember me, or will want to speak to me. Then my anxiety gets very bad and I am most unlikely to actually make the phone call at all.

I also hate answerphones. My mind tells me that this is silly, because at least answerphones are machines not people and so I should be less anxious about the whole thing. What actually happens is that I prepare myself to talk to a person, go through the script in my head, only to get a message demanding that I explain myself RIGHT NOW. The result is that I panic and say something stupid, or I hang up.

This whole problem is complicated even more right now by the physical health problems that I have and by the anxiety and mental health problems that I have suffered from for the last three years. On days when my fatigue and pain or cognition are very bad I just cannot speak on the phone. I may lack the energy to speak, or be unable to make the connection from thoughts to voice, or unable to complete my thoughts. (Which means I might be happily tweeting or chatting online but unable to talk on the phone.) Holding the phone for too long can cause extra pain in my hands and arms and back, and talking for more than a few minutes is exhausting. On top of all that, now I also get anxious about being anxious, and receiving a phone call can send me into a panic, which is why I often ignore calls from numbers that I don’t know. Unfortunately this can lead to things like me ignoring calls from my wife when her bike has broken down and she has borrowed someone else’s phone!

Cough, cough

It’s been a couple of weeks since my last blog post. That’s because reality decided to reassert itself in my life and I’ve been reminded quite forcibly that I am, in fact, ill. I never seem to notice when my health has been good until afterwards when it goes bad again and then while I am stuck in bed I realise that I’ve been out of bed quite a lot in the preceding few weeks. I’ve acquired a cold and a cough that has now turned into a painful chest infection. The result is that I have spent the majority of my time in bed for the last two weeks and my days are punctuated by fits of coughing that leave me seriously dazed afterwards. I visited the doctor today and started antibiotics so hopefully it will clear up soon.

I haven’t been completely inactive though. I’ve visited my doctor, which is a fairly big effort in itself for me. I have had quite a few phone calls with my solicitor dealing with aspects of my case against the DWP, and been sent mountains of documents to read to do with that. I have been to my first parish council meeting as a councillor, and managed to get drafted onto the planning committee and been to a meeting of that too. (Not actually as much work as it sounds.) I have even managed a few hours of computer gaming recently, something which I haven’t been able to face much while my mental health has been bad. The majority of my time though has been spent trying to stay awake but not really managing to do much more than slump in bed and stare at twitter, too tired to even tweet much compared to a few weeks ago.

And on top of that, I’ve been sent an ESA50 form – Limited capability for work questionnaire. It had to happen eventually, it’s been nearly two years since my last work capability assessment. The form arrived a couple of weeks ago and I think I subconsciously chose to bury it under a mess of paperwork so that I didn’t have to think about it. Unfortunately that means that I haven’t got very long left to go through the soul-destroying process of filling it in. I had better drug myself up and go and get on with it instead of procrastinating through blogging.

Reassessing chronic illness

A thought occurred to me this morning. I know a hell of a lot of people who were labelled with the wrong diagnosis for years before receiving the correct diagnosis. Several people I know were diagnosed with ME before later discovering that they have EDS. Others have been told that their symptoms are somataform disorder (All in the head) and all further symptoms ignored even when life threatening. (Even somataform symptoms can be life threatening.) Plenty of people accumulate conditions and symptoms but never receive a further diagnosis for it, instead having everything attributed to the first illness or ignored. For example I had burning pain for a couple of years before being told that it was diabetic neuropathy rather than being caused by my ME.

The Scream - how chronic illness feels

Given that original diagnoses may be wrong, new symptoms may be missed, new tests and new treatments become available, and new research is undertaken, it makes sense to me that after a long period of chronic illness people should get a chance at uncovering new diagnoses and accessing new treatments. I would like to see patients automatically being offered a chance to start again with a blank slate after a decade of serious illness. A new GP (or perhaps two or three) would assess the patient, new tests would be run based on the latest research, and referrals to new specialists could be made. The latest treatments could then be offered. This could be life-changing for a huge number of people. It would be important for this to happen without referrence to notes except where life-threatening treatment needs to be maintained and without patients pointing the doctors towards their preferred diagnosis. There would also have to be patient choice and other safeguards at the heart of this.

The scheme would be expensive, of course, but it could well also pay for itself in replacing ineffective treatments with treatments that work and in enabling people to restart their lives. And in any case, MPs seem adamant that all articles and disability changes often enough that we have to be reassessed for benefits every year, so I don’t see how they can complain about the cost of this scheme.

What do you think?

Iain Duncan Smith is proud of getting people off benefits

IDS - "We've heard enough of you"
“We’ve heard enough from you.”

Owen Jones confronted Iain Duncan Smith with the names of two people who have died as a result of the work capability assessment. He did not react well. I urge you to watch this video of the last part of Question Time, particularly the last minute if you want to see what IDS is really like.

“Hang on a second, we’ve heard a lot from you. Let me tell you something. I didn’t hear you screaming about two and a half million people who are parked, nobody saw them for over ten years, not working, with no hope, no aspiration, we are changing their lives, I am proud of doing that, getting them off benefit is what we are going to do.”

Iain Duncan Smith is proud of getting people off benefits. Never mind that there is no work for them to go to even if they can, and that the way lives are being changed is by sending people further into poverty and homelessness. Not only that, but he thinks that being “parked on benefits” and left alone is a bad thing. Well those of us on permanent sickness and disability benefits do have hopes and aspirations. We hope to not have too much pain today and we aspire to getting the care that we need so that we can undertake something entertaining that isn’t lying in bed waiting to die. We probably don’t aspire to being a rich Tory, which is probably similar to being dead in the head of Iain Duncan Smith. As for nobody seeing sick people, now they are being reassessed so frequently that they are committing suicide. Winning an appeal at tribunal often leads to an immediate call to another assessment.

https://twitter.com/crazybladeuk/status/271197324594786305

Dead people don't get benefits
Dead people don’t get benefits – cartoon by @dochackenbush

Further Reading

Brian Mcardle: Atos benefits bullies killed my sick dad, says devastated Kieran, 13

Karen Sherlock: How many more disabled people will die frightened that their benefits will be taken away?

Karen’s Story – RIP Karen Sherlock, Disability Rights Campaigner – Died June 8th 2012

Hundreds more: The People’s Review of the Work Capability Assessment

 

Mental illness is more disabling to me than physical illness

I have reached the point where mental illness is more disabling to me than physical illness. Before I became depressed I was physically ill with ME, diabetes and migraines and I was limited by fatigue and pain but I could write, I could repair computers, and I could focus to read or watch TV, as long as I planned around my illness. With regular rests and flexible timing I could engage with the world and get some things done. Now, though, depression and anxiety steal my focus for hours at a time and prevent me from completing even the simplest task. I start writing blog posts and manage one line. I start watching TV and manage 2 minutes of a half hour episode. I start games then give up. I drive to shops or friends and then can’t get out of the car. I look at my forms for help with power wheelchair costs and freeze up. The phone rings and I pull the duvet over my head.

My physical and mental illness seem to feed off each other too. If I reach a point of (even more than normal) exhaustion then I will also become overtaken by despair. Depression and anxiety also make it impossible to work towards improving my physical health. I need to get a routine and start pacing my activity but mental health problems mean that I can’t even think about doing things when I need to.

I’m not sure that I have a point in this blog post other than wanting to rant a bit. I suppose if anything my point is that depression is not some minor inconvenience. It is a real, crippling illness that will destroy a life just as effectively as any physical problem.

Not much going on

It is now over a month since I last wrote anything on this blog. I’m used to writing weekly or even daily but my mind has just not been up to writing anything. I have still had discussions and come across ideas that make me want to write, but actually converting those thoughts into written words has been beyond me. In fact just about every task has been beyond me recently. I have always had a problem with completing tasks but with this depression I haven’t been able to even start most tasks. Asking me to do something is a guarantee that I won’t be able to.

The problem is that at the moment I don’t have any of my illnesses under control. My sleeping pattern is basically nocturnal, and adding on the extra hours that I need to get from waking up to actually moving I have been getting out of bed between about 3 and 5pm each day. My fatigue is generally worse when I’m awake, as is the drowsiness, and hours out of bed are very limited. My blood sugar is out of control whether I eat sensibly or not and most of the time I’m not eating sensibly because the more depressed I am the more rubbish I eat. And the depression. That’s pretty much back to crippling again. Can’t face anything, don’t want to talk to anyone, bouts of despair and thoughts of dying.

I have managed occasional distractions. I went to a party in London a few weeks ago. I visited family to help with their new house. I went out for the day last Saturday and helped buy a laptop.  I have driven to the shops and back. Even so, most of my time has been spent drowsy or asleep and not doing very much.

I know what I need to do. I need to start pacing, plan activity, and control my diet. The problem is, I can’t face doing that.

Back to sleep then.