Healthcare wishes

Today’s WEGO Health Challenge is: ‘Votes are in – you won!
If you got elected [Prime Minister], what are the three changes you would make to healthcare [in the UK]?’ (wording amended to suit the country that I live in. 😉 )

1) In the UK the National Health Service (NHS) has been quietly privatised bit by bit in the background during that last few years. Many NHS sites are run by private companies already and very little is left to do to leave us without the NHS we have known for the past 50+ years. Up until now it’s been a case of private healthcare being available to those who can, and want to, afford it (as is health insurance), but every UK resident has had access to free healthcare since it’s birth in 1948. There are always some medications which aren’t covered by the NHS owing to cost (and they get discussed separately) but most forms of healthcare have been accessible for all. The privatisation of healthcare is going to change that massively over time as a healthcare system which is profit- rather than ethics-driven is a whole different animal. As Prime Minister I would want to ensure that free healthcare continued to be available to all and retain the ethics upon which the NHS was built for a healthier population.

2) I would ensure that doctors have to periodically be brought up to date in different areas of health. Research and knowledge moves forward over time and understandings of health conditions change, it is not acceptable to have doctors working on outdated premises as it can result in incorrect and mis-diagnoses. I do not expect general practitioners to have specialist knowledge of course, but to have a good general understanding of health conditions as they are currently viewed.

3) I would ensure that medical training includes a ‘zebra’ section about the conditions that appear paradoxical in their presentation and how they can be easily misdiagnosed as a common disorder, resulting in either no treatment or incorrect treatment. For example, basic information such as anxiety symptoms can be caused by anxiety, or sometimes by a disruption to the underlying mechanisms – never assume. (Oh and P.S. doctors are not qualified to diagnose psychological conditions such as depression so patients should be referred to a qualified clinical psychologist for appropriate assessment before writing something in their medical notes which is, effectively, merely a non-specialist opinion and may not actually be correct).

An illegal #4) (Ooh, I’m such a rebel! Mwoohaahaaa!) I would also ensure that the list of health conditions referred to by various organisations (such as disability benefits assessments, for example) are routinely updated so that descriptions of conditions are kept up to date and moved to more appropriate umbrella headings as required. (My experience of the benefits assessment recently is that ‘RSD’ is on their list of conditions, but the new name ‘CRPS’ is not – how can it not have been updated since the name change in 1994? Back then it was thought to be a common-or-garden ‘pain condition’ so when I spoke about it affecting the autonomic and central nervous systems they had no info’ on that, or on the auto-immune aspects, or on the neurological re-wiring effects including neuro-psych’ deficits. It is rated on the Department for Welfare and Pensions’ (DWP’s) list as such a simple condition that I was told that there was no need even for me to be assessed by a non-specialist general doctor with no knowledge of the condition, that a non-specialist nurse with no relevant specialist knowledge was sufficient. Only when I mentioned ‘dystonia’ did they realise that I needed to be assessed by a neurology based doctor (I ended up being assessed by a surgeon). And that was pure fluke that dystonia happened to be on their alert list rather than any of the other CNS and neuro’ issues that I have). This has to change. Working from a description of conditions where some have no bearing on the current medical understandings is completely ridiculous.

I am not the Prime Minister, however, and I don’t envisage that job being part of my future! But I still have hope for change, not because I think that the PM is going to suddenly wake up at 2am one day and have these things occur to him, but because people like you and I can help to highlight issues that need addressing. The NHS is so far gone I don’t know if we’re going to get to revert it back to what it once was anytime soon (although that doesn’t mean we shouldn’t try of course). But by raising awareness of our complex conditions we can make a big difference. The key is in using the skills we have rather than trying to do something which is tough for us on top of living with our wonky health day-to-day.

My skills are founded in psychology and research, plus I love helping others and sharing information so that naturally translates for me into research papers and advocacy work. But I am not able to work so I do what I can when I am able to do so.

For many other patients life is filled with things like working and being a parent so in those instances it is easier to look at things like sharing information, taking some papers to the doctor for them to update their knowledge, signing a petition to highlight a particular issue and so on. We each do what we can, and hope is in us, it’s in our hearts.

Brain power

Today’s photo challenge: “a picture of an item that gives you hope”!

My own personal hope is founded in my brain, though (whenever it actually works and for as long as it will do so!) because I spend time reading research papers and collating information that helps me to work with my doctor and local pharmacist to figure out what’s the best path forward for my particular array of health issues. My heart and my determination will undoubtedly continue, it’s ‘just’ the brain fog I need to work around, the brain is my hope! ;-P


Remembrance Day for the UK Disabled Dead

Most of you are probably aware by now that the benefits reform in the UK has resulted in, and is still resulting in, thousands of deaths of disabled people. They were declared ‘fit for work’ and then died soon after either as a direct result of worsening health, a direct result of the true severity of their health or an indirect result of the decision through increased stress levels and suicide.

Averaging 75 deaths per week, the UK is surely a leading light in destroying the vulnerable and getting the general population on board to believe that the chronically sick and disabled are really lazy people who could be consistently active if they could only be bothered. Highlighted from time to time, as it was this evening, by reports on the news about how disabled people are now joyfully getting into sport. (Which is good, but for the fact that what it fails to mention is that many cannot do this, leading people to believe that disabled people are ‘just’ disabled – the chronically ill and severely disabled are never mentioned).

Today the government celebrated this dually significant day, owing to the parliament-requested remembrance day and the existing International Day for Disabled People, by introducing new rules that the disabled should work for free to keep their benefits. With the rather large unmentioned and unaddressed issue of.. what on earth do the chronically sick disabled do when they can’t work? (the link to Mike’s blog below explains more on this issue). But that’s not something the general public are aware of or that the powers-that-be want to hear about. It’s not something that the media are reporting. Although credit to those sparse few journalists who do dare to speak out…. we love you for being strong enough to do so…. thank-you….so much, x

Here are a few good articles I read today that dared to not tow the government’s line…

Owen Jones: Hatred of those on benefits is dangerously out of control …, an Independent Newspaper Columnist writing fo ‘ATOS Victims Group News’

Sick and tired: the coalition’s war on the disabled and destitute, Laurie Penny writing for the New Statesman

Confusion reigns over work programme for the disabled, Mike Sivier writing on his blog Vox Political (a very informed and well researched husband of someone going through this process)

And if you fancy a bit of a tongue-in-cheek, slightly jocular but nevertheless serious… then how about a piece I read the other day by Mark Steel….

Are Tory ministers really so stupid that they think that leaving the blinds down is a crime?, Mark Steel writing for the Independent


2012-12-03, 2 min silence for DWP & ATOS deaths

This picture is shared courtesy of Jim Moore at National Remembrance Day for the DWP/ATOS Dead, it refers to today’s 2 minutes silence for the disabled dead at 11am. I should think that most people didn’t know it happened. It wasn’t reported in the media.

Seeing as it’s the people who are experiencing these appalling brick walls that are left to try to fend for themselves, anyone willing to spread any awareness at aaaall is very much appreciated. Keeping abreast of the real situation is a bit like being in the film Men in Black. You know… they check those small backstreet mag’s that everyone thinks are crazy to find out what’s reeeaally going on. It’s funny in a film, but incredibly sobering in real life when people’s quality of life, basic human rights and even their actual life itself are so utterly disregarded and irrelevant to others. The only stories that seem to cause the odd twitch is when people are told that this treatment includes our disabled soldiers. And so it should cause a twitch, what way is that to treat them, or indeed any disabled being?

Never before have I been so utterly ashamed, horrified and genuinely scared of what those in power in my country are doing. Those of us who are chronically sick and dealing with horrific and disabling issues every day of our lives with no break at all cannot handle this as well.

I sat in silence for the two minutes at 11am this morning. I did nothing but send out love to all those families going through this, all those individuals currently stressed, confused, angry and fearful. You are not alone, your fellow disabled stand by you. Now we need to enable the able-bodied population to see the real stat’s and info’ from those few journalists and freedom-of-information users who care about our plight. Let’s spread the word, share a link or two, anything and everything helps, x

Love and calm wishes to you all, x

If I could accomplish one thing in 2013….

That’s an eeeaaaasy one to answer!

I’ve hardly been able to write for this November’s writing challenge. Initially because my brain falls over anyway, but then it was exacerbated by the two days of hospital tests which required coming off my meds…. eek! More symptoms to deal with, prolonged period of time for recovery and I’m still not back to my wobbly little version of ‘normal’ yet! I’ve fallen way behind in my studies because my brain won’t work and my body thinks it would rather like to pass out from time to time. Occasionally I’ve managed a blog post, but that’s about it. *sigh* Maybe next year…

When it comes to the writing challenge of the day: what the one thing is that I’d like to accomplish next year ….. I obviously have to first survive 2012! I’ve got a mere one month left to do some serious catching up whenever I can. So my yearning for an accomplishment next year is hanging on a thread surrounded by 2012’s dastardly attempts to thwart me!

I have received my disability forms for the changeover of the UK benefits from the old system to the new get-people-off-benefits-and-back-into-work system. Which we’d all adoooore, right? Working and being ‘useful’ again is central in many of our hearts. A real ‘I wish’. I can’t guarantee being able to do anything on any day, as I talked about in my recent post about health variability. And the trouble is that very few people get support to look for work that they might be able to do from home around their health, oh and the completely inapplicable yes/no tickboxes filled in by non-specialist assessors who don’t know about CRPS or Dysautonomia and who have nowhere on their tickbox forms to write anything about the crucial variability. o.O

If I plan in advance so that I can at least function in the assessment, they’ll tick boxes saying that I can function. It doesn’t matter that it took a week or two of preparation and tight activity control to get there in the first place, and it matters not one jot that it could take me weeks to recover from it. It only matters if I can touch my toes, pick up an object, talk coherently in the appointment etc. I know…. bloody stupid, right?

There is an average of 75 disabled deaths per week out of those declared ‘fit for work’. (Around 80% of disabled people are being declared ‘fit for work’, particularly those with complex or variable conditions). (The assessing companies have a financial incentive from the Governments’ Department for Work and Pensions for each individual they find ‘fit..’).

The UK disabled deaths over a period of a mere 6 weeks matches the number of UK armed forces fallen during the last 10 years in Afghanistan. And that’s just during six weeks, right? …..6 weeks of disability assessments vs 10 years of warfare created the same number of deaths. We mourn our lost soldiers, and rightly so. We don’t mourn the continuing deaths of the disabled. The figures are seen as some sort of farce, like it’s just not really the case. And when people who could be answerable are occasionally asked about it, they say that we’re more likely to die anyway. Just shrug those deaths off, why don’t you? We’re not really people anyway. It’s not like we feel or anything. Right???

Bear in mind this assessment process was declared ‘not fit for purpose’ after the original pilot study, but was rolled out anyway. It has now been distressing vulnerable disabled since 2008. Yes. That’s a lot of dead people. And yes, there’s an avoidance in the UK media about it. Only the Guardian seems to dare to speak out from time to time. Otherwise media mention is generally avoiding the issue, and yep, even the BBC is oh-so quiet about it all. Often various media coverage is a blatant misrepresentation or avoidance of the facts. Like when some papers talk about how many disabled have been declared ‘fit for work’ as if it’s some sort of success story. They choose to not mention that a vast number of appeals go through successfully, that the assessments are often found to be impossibly wrong, and they certainly don’t mention deaths other than as if they are anecdotal one-offs. The figures are ignored. Seen as irrelevant. The support for disabled people is missing. We are irrelevant. Not worth saving. Not worth fighting for. Not worth signing a petition for. (There were twice as many signatures petitioning against the UK animal tuberculosis related badgers cull). Despite the new system being fully opposed by the British Medical Association, no-one gets to hear about it as anything of any import.

It’s an incredibly distressing time for every single one of us who has a disability. We face being told we are fit for work’ when we are unable to do so. And there are a lucky few who get some kind of support to find work that might possibly be viable, but if they haven’t found viable work within a year they are also cut loose. No money. No support. Left bereft and penniless, whilst still trying to function with chronic illness and disability.

I fully expect the assessors to not comprehend my very specialist, multi-discipline progressive condition. So I’ve been trying to re-write some of my ‘What is CRPS?’ page from the blog so that they at least have some information to look at, with the references at the bottom so that they can see it’s legitimate medical science rather than my viewpoint.

I’m so very exhausted. I’m out of steam. Out of juice. Out of brain. Damn well out of nearly everything, including time.

Oh yes, and my disabled parking badge just ran out. Great timing, hey?!

The extra work and stress is causing further flare. Which impacts on my ability to do any small thing for a useful moment or two. So everything takes longer. And I fall further behind. And the stress increases.

I am worried about my studies. Genuinely concerned. Yesterday I told one of my besties that I am concerned that I might fail my course as a result of just not being able to study. I can’t think. My brain has simply not been there. For months. Stupid neurological condition. *grumble grumble*

I’m not allowing any attempts at studying at all until I can get the disability stuff sorted. Disability coherence is too important. But I can’t get my brain to work well enough for it to be anything other than painful slow-going. So I fall further and further behind. I used to be a princess of last minute assignments. Back in the day. But now I have no idea if I can think critically enough to do any studying at some point during a week or month, let alone during a day.

I don’t want to lose this. I am studying this course to help others. I am compiling research to add to the ‘state of the art’ – the current knowledge and concepts in my specialist area. I am not ‘just’ doing this for me. Though I would be so proud of myself for getting through it and producing something useful at the end of it.

Please, please, please, please, please let me be aware again. Let the meds kick in so that I might get an hour or so a week, at least. I don’t want to lose this. It is slipping away from me. I cannot grab to catch it until the disability paperwork is complete. And I cannot complete the disability paperwork until I get a bit of brain time. Round and round and round we go!

So… with everything going on a once, with the disability stuff beginning to get underway for me and all of the awful-ness that will follow, I need to do something for me. That makes me feel like I’m worth something. Valued in some way. If I could achieve one thing in 2013 it would be to finish my course. The course that I scrimped and saved for years to study. That I couldn’t do for years anyway because of my health and then I went and enrolled anyway because the qualification would have timed out. I would have always wondered. I had to try. But I want to succeed. Not like anyone else would succeed, I know I am a bear of very little brain compared to the old me, but to succeed by my modern day standards. To pass the course, and ohhhhhh I want the research to be good. Please, please, please! Let me complete the research to share with others, that could help others. And let me have my one little moment walking across that stage at the end of it all, with a photo’ of me looking self-conscious and awkward with the gown on and a silly grin, so I can look back at and say “Egads, I look awwwful”, but be so proud of myself for getting there in the first place.

2013. I’d like to leap into the new year like a ninja ready for action, but I fear I’ll crawl in by my fingertips instead. 2013, pleeeaaase let me be me, just for a while, let me pass this course and make a useful difference in the world.

<screws up eyes and wiiiiiiishes> !


The weirdest thing about my health…

It’s a bit paradoxical really, certainly frustrating and even wearing, but the weirdest thing about my health is also the one of the most fundamental aspects. It is the most obvious part to me, which I have to work around every day but it is very the part that most other people cannot get their heads around.

Even the disability benefit forms don’t allow for it, even though it affects so many disabled people who are chronically sick. The new Atos benefit assessments are just tickboxes for ‘yes’ or ‘no’, and as such blatantly ignore most of the chronically ill population as they leave nowhere in the assessment for the crucial information to be logged.

Yes, the weirdest thing about my condition is the variability.

I have spent many years doing physio’ every day to try to retrain my ANS from flipping out at activity levels. I have built up what I can do, but am still restricted beyond that. However, just because I have two periods of physio’ per day where I get my body to move and use the time to get things done, it does not mean that I can necessarily do that every day. And I certainly can’t do it outside of the physio’ time as I am forced to spends hours recovering.

When I manage to be up and about, I don’t necessarily know just which activities I am capable of that day. If I want to do something more I have to plan it waaaay in advance with lots of resting for days, or even weeks beforehand. And days/weeks of minimal activity set aside afterwards for recovery, too.

Some days, just getting washed, dressed, fed and washing a few dishes is all I can do. I get extra pleased on less near-fainty days when I can cope with the up and down motions of something like hanging the washing out. The simple things please me these days! And after a physio’ my body always has to rest for several hours.

The trouble is that resting isn’t as straight forward as it sounds, either.

Resting involves having to have my legs up to help them to recover from the activity and to avoid the CRPS pain flaring too much. Pain is what I live with all the time of course, and yet you won’t see it on my face when I’m physio’-ing my way through tasks. I’m really good at hiding pain. I have to be, people get uncomfortable if they can see my pain levels, so I am as cheery as I know how. I had yeeeaaars of practice at it! Besides, it’s blummin’ good to be able to get up and do something useful for a change! But the pain is always there, and towards the end of a physio’ it starts to get meaner, then after my physio’ it explores even higher pain levels.

I also have to rest somewhere really comfortable or the CRPS pain in my hip will go through the roof.

And I always have to have warm clothes on and a blanket to keep my leg muscles from tensing or the pain levels will soar even more.

I nearly always have a hot water bottle (covered, of course) for the same reasons.

If I cannot put my legs up, if I am not comfortable, or cannot get warm, then the pain levels will just continue to rise.

At home I can fulfill these requirements and function a little better. But what do I do whilst I am stuck on the sofa trying to get the pain levels down?

This is where I tried to get my body used to sitting. But even with a medical legrest, individually tailored ergonomic and memory foam covered chair, ergonomic moveable arm-rests, a pillow over the footrest, a pillow on the chair, a hot water bottle and a blanket…. I *still* can’t sit here for longer than 30 mins on a good day, and 0 mins on other days. 😦

If the pain isn’t too bad I could read for a while, but pain combined with the neurological issues means that I can’t always understand words properly so I often cannot read. Or if I do read, it tends to be familiar and easy reading. Writing has similar problems. But I try to do a bit of both at different times to keep my brain ticking over without draining it of it’s crucial neurotransmitter resources. Which get used up really quickly, by the way… I lose my brain because when we are chronically sick we make so many small but tough decisions throughout the day about things we would have once done/decided/considered without even noticing, (can I get to the toilet or will the pain flare if I try to get up yet? Is it better to get up to get some fluids and suffer worsening near-faint problems, or will it calm down if I just lie down for a while longer? Oh no, the postman’s at the door, can I get there in time and how many hours will answering the door set me back with my pain and recovery? And so on). So our decision-making and comprehension chemicals get used up on the mundane, leaving our brains in a pretty useless state fairly quickly.

As I suffer from various autonomic issues as well, (part of the CRPS), I don’t ‘just’ have the complications of pain variability. Having to pace how much and how often I use my brain sounds hilariously ridiculous to me, and yet I have to swallow my pride and put up with the reality. Think a bit, rest brain for several hours. Same as with how I can use my legs. And now the CRPS has spread through my body I have trouble using my arms too much as well. *sigh*

The near-fainting is another spanner in the works. When it’s bad, it’s bad. That’s just the way it is. I drink fluids (to top up my blood volume), pace myself (to keep things on a more even keel), keep as calm as possible (to reduce the effect of the ‘fight or flight’ kicking in as that raises my heart rate and drops my blood pressure), I have a little more sodium than the average person (to keep more fluid in my veins), but as my near-fainting is not purely vascular the fluids and salt can only do so much, and it’s tricky trying to keep faulty nervous systems under control when they are not processes we usually have much control over anyway. Keeping calm, moving slowly, lying down etc are the kind of things I can do. But still, when it’s bad, it’s bad. And when it’s bad, my day stops where it is and the horizontal becomes my new position of the day.

Only I can’t stay in one position for long, of course, coz it’ll set off the pain levels. Frustrating, much?!

Everything is related to everything else. Our various body processes are inter-related. They interact with, and affect, each other. A holistic view is the only way to go with a condition like mine.

But ask me if I can touch my toes, the answer is not ‘yes’ or ‘no’, it is ‘sometimes’. This is because I am very flexible (hypermobility issues are common with my patient group) but although I can touch my toes, it might render me on the verge of passing out and throwing up for the rest of the day. This can sometimes happen even if I touch my toes whilst sitting on the floor with my legs out, too.

Ask me if I can walk (or mobilise as they say in the official assessments) for however many meters, my answer is ‘sometimes’, because during a physio’ period I may well do so. On a good day I may look as if I’m able-bodied during my physio’ time only, and if I achieve that I am chuffed because that is a good physio’, it’s exactly what I should be trying to do, but in between physio’s I am rendered immobile and in high pain levels and can’t get up for long periods of time owing to a) existing pain levels, and b) the fact that if I get up too soon the pain levels will rocket and take much longer to calm down again. The way my condition works means that I have to stay put.

Despite having to rest for so long, ask me if I can sit for any length of time and the answer is strangely ‘no’… unless it is a soft comfy sofa or bed, with no draughts, a blanket, a regularly topped up hot water bottle, and a few options for position changes. Anything else and my pain will start an upward rise in flare levels and I will end up incomprehensible with pain.

Ask me if I can understand words, whether written or spoken, and my answer is ‘kinda’. Despite my neurological issues I still have the same level of intelligence, I am even trying to complete the final module in my masters that I’ve waited years to do, and it got to a ‘now or never’ stage But try studying when your brain is never clear any more, when if you type as little as a blog post for a few days in a row your brain just stops comprehending words. Ask me about something really familiar but very complex, like my health condition, and I can usually handle it. It makes me seem oh-so capable. Familiar information that I work with all the time is much much easier to comprehend, although when my brain stops working I can’t do that either. But ask me something I’m not expecting, that my brain has to think about and consider before responding, and you might witness a strained thinking expression on my face, sometimes I will look confused because I don’t always understand first time, and sometimes I will be fighting back the distress at realising that I just don’t understand things like I used to. I don’t function like I used to.

Variability. Built in to every aspect of my very complex conditions. And yet the one thing that most people cannot comprehend….

How can I be walking with Magic Dude looking ‘normal’ and yet then have to rest for hours afterwards because the pain will flare severely otherwise? How can I be studying at post-graduate level when my brain is so faulty these days? Or discuss the complexities of a specialist condition when I struggle to understand what the dentist’s receptionist is saying to me? And how can I be so calm and strong through living with these conditions when I come close to passing out if I realise I’ve doubled booked a friend visiting for a cup of tea with a hospital appointment?

It all makes perfect sense to those of us who live with such conditions because we have had to learn about the mechanisms that cause the problems to try to function the best we can around them. That is why I physio’ each day, because activity is as important as rest in working around my conditions which are just not controllable.

But to others it sounds paradoxical. It does not seem to make sense. Even medical practitioners do not always fully understand it. But then again, let’s face it, even the tertiary level specialists in pain and dysautonomia do not claim to fully understand these conditions which are still coming to light through ongoing research.

So you ask me if you can pop round for tea, and I will ask you exactly which day and what time, and then I will say yes or no. What you won’t hear me say is aaaaall of the working out I’ve got to do in my head about how I can factor that into my day without making the pain flare, or the near-fainting worse, and so on. There are a zillion and one factors to every moment of every day that relates to how I can function during every other moment of that same day, and the next few days, the next few weeks, even.

Everything has to be planned; and yet nothing can be planned…. because you don’t know what state your body will be in each day. The best you can do is to constantly assess where your body is ‘at’ throughout the day and try to respond. Flexibility is the key to survival, and yet so is regimented body physio’s and brain activity down-time. Paradoxical to the last.

Variability is the one thing that others often don’t understand, and it is a massively important aspect left out of disability assessments. Patients with variable diseases often fall through the health and benefits safety nets, because the concept of ‘can you do this.. yes or no?’ Just doesn’t factor in our lives. “Sometimes” is all we can say without going into a long and complicated explanation!

Disability protest barely covered on the news

In case any of you were wondering what is going on in the UK with regard to the removal, sorry ‘reform’, of the disability benefits system…

There are various disability groups attempting to raise the profile of what is happening to the disabled in this country. Focus groups around the UK were asked about how many disabled people they think are fraudulently claiming benefits, and the figure that transpired was 70%. You may remember from my previous post that the actual government figure is merely 0.5%, (less than all other benefits apart from pensions). So the view of the general public is distorted. Okay, so now we know (officially) that this is the case.

So what’s happening now then?

Well, some of the newspapers are beginning to write a bit about some of the more salient points. A bit. Sometimes. It’s an improvement, though.

The ‘ATOS Games’ (mentioned at the end of my previous benefits post) kicked off with a protest outside the ATOS building involving hundreds of people. ATOS are the company running the disability assessments for the government. The company that has the task of removing benefit from a large percentage of the genuinely disabled and declaring them ‘fit for work’.

But ATOS are the ‘middle man’, they are only doing what the government contract asks/tells them to do. I feel that it is more relevant to address the cause, rather than the symptoms. Many others feel the same, and yesterday a peaceful protest occurred outside the DWP (Government Department for Work and Pensions) offices in London. I don’t currently know how many people were there, I can’t find a report of numbers. Even the BBC barely gave it a mention, morphing quickly into a report about the paralympics being great, but how it was terrible that some cash machines did not have voice commands, (Coz that’s soooo much more important than people no longer being able to live, right?) (Yes, I briefly dissolved into sarcasm. Sorry about that. How unprofessional of me).

And that’s why I’m sat here writing this, when I should be winding down and taking care of the pain in my body. But how can I let this pass without commenting on it? Why is this barely being reported at all? Why is the footage of London police pushing, shoving and dragging disabled protesters not priority news? Why did the local news on TV make a point of showing yet another minority bad person who pretended to be disabled but was found out and taken to court? What is going on here? These are not rhetorical questions. Somebody somewhere is making the decision that this is not to be top news. Which makes the current state of affairs even more frightening.

It is truly shocking that the general public are not rising up against the wholesale abuse of some of the most vulnerable people in society. But this lack of clear and comprehensive reporting is keeping wider society from hearing about just how horrific the situation is. So the task of reporting falls instead to those of us who are living it.

I have heard this morning that some of yesterday’s protesters went and asked a BBC reporter why the BBC was not covering this situation in any detail. I have also heard that there may well be a bit of subsequent reporting coming up soon as a result. I hope so. And if there is, credit to the protesters who asked and to the reporter who went away and did something about it. Fingers crossed.

The figures are out there, we know there are less than 1% disability fraudsters, although admittedly the numbers have so far only really been out there for those who can be bothered to look for them. So what is going on?

Seriously Britain, what the flip?

Everyone in this country will know someone with a disability, there are so many disabilities and illnesses that it’s just statistically unlilkely for anyone to not know someone who is disabled in some way. In addition, none of us know when illness or injury may strike. This is relevant to us all.

These protests need to be made. The latest figure I have found for suicides and deaths of those who have been pronounced ‘fit for work’ is over 1,300.

Just in case you missed it….. more than…. one thousand three hundred.

Significant, no?

Likelihood of this number of deaths occurring in those who are truly fit for work…? Yeah. Not very.

So, in case no-one actually ever tells you about it. I am telling you about it…. Yesterday peaceful protesters gathered outside the British government offices for the department of work and pensions. Some of them made their way into the building. That was probably a rather bad idea, better to remain truly peaceful, but understandable considering the level of fear and distress these changes are causing. However, bearing in mind that many of the protesters are disabled, even if they don’t ‘look’ it, this video was a bit bit of a shock to see.

Please support British disabled in asking for nothing more than a fair system. We need your help.

Reeaally need your help.


In case you feel you would like the above clip in a broader context, here is a different, longer video recorded by a protester..

More sharing of my disability article, thank-you again, xx

After writing yesterday’s thank-you I discovered that had also shared my UK disability benefits blog post. Many thanks for sharing the word, xx

Sharing of disability articles and information, thank-you, xx

It was gratifying to see my last post picked up on the 8th August by Jane Young at because it is a post which is important to me with regards to the protection of my fellow vulnerable patients.

Thank-you, Jane Young, x

Most able-bodied people in Britain seem to genuinely not realise what is happening to the disabled population and I was trying to inform and possibly even help to redress that balance a little, xxx

British disability benefits, shockingly shameful behaviour

New petition link added August 19th, 2012 (see first links below post), thank-you, xxx

Currently the London Olympics is on the TV all day every day. It’s on the news. It’s on the morning chat programs. It’s everywhere. The games seem to be going well, even the transport system is coping (admittedly this is largely as a result of us Brits being warned that it will be awful so none of us are going anywhere!). This year we also had a royal wedding and the Queen’s diamond jubilee. It’s a year for celebrations. A year to wave our flags and be proud. And yet I am currently torn between ‘joyful Brit’ and ‘ashamed to be a Brit’.

The force that has torn my attitude into two parts is that of the recent undercover insights into the UK disability benefits system. As this information has been popping up online I have been finding out that even friends from overseas are aware of the changes occurring. One person used the word “barbaric” and to be honest… I agree.

The old system certainly did need to be changed. The previous Labour government (left-ish winged) introduced a new scheme in 2008 which they admitted was lacking but that a pilot scheme would be run so that amendments could be made before rolling it out to the rest of the country. Of course you would expect that the election of a different government could well make that journey more bumpy , (current government is now a coalition: majorly right-wing, minorly left-wing), but an economic downturn took the limelight in the news headlines, and somehow this pilot study just got rolled out as it was in it’s raw form.

“Can you hold a pen?”, was the famous question that initially made us all quake in our boots.

“Yes, even if I don’t know what it is at the time/am in the process of fainting/am in so much pain that I don’t really know what’s going on…” were some of our many varied replies. And the ‘yes’ box would simply be ticked.

Here is a link to the directives in which 11,000 disabled per week have been assessed in the light of.

It doesn’t take many brain cells to spot the consistently massive error continuously sledgehammering into our consciousness as we read those directives. Funnily enough, they have been found to be incredibly inadequate (i.e. a completely irrelevant bunch of arse), particularly for those disabled individuals who have conditions which are inconsistent and thus vary throughout each day. There are no grey areas in the form that the subcontractors have been advised to fill out on our behalves. It is black, or it is white. There are no other options with which to answer. So we are either terminally ill or obviously severely physically limited… or… we are absolutely fine and dandy. Oh skippety hop, apparently lots of genuine disabilities no longer exist. We must all be in remission, right? (Did you spot the sarcasm? Sorry about that!) In the light of these directives CRPS is not a disability, nor is any form of dysautonomia, or ME, or CFS, or mental health issues, or…, or………  Simply because we cannot say  “we cannot pick up and move a 0.5 litre carton full of liquid”, but we also cannot say “we can pick up and move a 0.5 litre carton of full liquid”. It’s not rocket science, it’s just that many many disabilities are not a yay or nay scenario. They are a “yay sometimes but with resulting pain and other condition issues, but nay the rest of the time because our conditions are varied and we permanently have to work around the symptoms as well as biological and neurological payback”. Oh, is there not a tickbox for this option? Grrrr.

A black and white assessment of a many coloured disabled population

This new system is costing government and taxpayers £100 million to roll out to all, and an additional £50 million every year in appeals owing to the level of fault in the system. The fault isn’t minor either, around 38% of appeals are successful, and if a professional is involved to shed light on the health of the individual then the success rate is more like 80-90%. This isn’t just hurting the disabled, it’s costing everyone a vast amount of money. Helping people to get back to work is admirable, the main problem is that they are targeting people who really want to work, but genuinely can’t.

The UK definition of disabled (under the Equality Act 2010) is….

“A person has a disability if:

  • they have a physical or mental impairment
  • the impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities”

And just in case that wasn’t clear enough….

“For the purposes of the Act, these words have the following meanings:

  • ‘substantial’ means more than minor or trivial
  • ‘long-term’ means that the effect of the impairment has lasted or is likely to last for at least twelve months (there are special rules covering recurring or fluctuating conditions)
  • ‘normal day-to-day activities’ include everyday things like eating, washing, walking and going shopping”


“Progressive conditions considered to be a disability:

There are additional provisions relating to people with progressive conditions. People with HIV, cancer or multiple sclerosis are protected by the Act from the point of diagnosis. People with some visual impairments are automatically deemed to be disabled.”

I reckon it’s now probably really easy to spot an ‘invisibly’ disabled person in the UK, coz we’re the ones with the expressions of incredulity and abject terror!

Hilariously (?) the voiced main reason for reform was to get those on benefits back to work, and yet there are reports beginning to surface that the replacement general benefit is going to offer less incentive to get back to work than the old versions being replaced.

For those of you not familiar with British benefits, there are politicians referring to a ‘benefit culture’ over here. They are referring to a percentage of society who were raised by parents on benefits, brought up to live supported by the system, and then themselves progressed into a benefit funded life as adults, thus perpetuating the problem. This is a small percentage of society, but one which gets noticed and which the rest of society is not too chuffed about.

Now…the really important bit… …these are people on a low income benefit, (called Income Support for many years and still referred to as such). It is ‘means tested’ (based on your income) and so it exists to support those on low incomes… carers, single parents, refugees learning english (only for their first year), people on parental (maternity/paternity) leave. So you can see how a fraction of people can continue to exist on this benefit for many years. Particularly carers, who do a sterling job for barely enough money to survive on. Not to do the single parents down, of course, just that as a disabled person I have extra insight into the carers life. A small number of people on low, or no, income, however, may have the opportunity to get off benefits but prefer not to. They are the sub-group to which the politicians are referring.

The disabled are not on Income Support. They are on Incapacity Benefit. Courtesy of their being incapacitated. The clue is in the name, see?

However, for many years I have been told that Incapacity benefit does not exist by all sorts of professional people filling in forms for me. It doesn’t always show up as an option on their forms, it just isn’t known well enough and gets missed off the lists. Everyone has heard of Income Support, though. The incorrect assumption is that disabled people are on this benefit. And thanks to some exceptionally poor media reporting, very unhelpful wording and theme-blurring by politicians, the misunderstanding is that the ‘scroungers’ includes most of the disabled.

Pause for perspective….. It is estimated that there are less than 1% of benefit fraudsters, and there are already teams in place who thoroughly, and secretly, investigate those individuals. Additionally, the government’s own statistics show that there are eligible people out there who do not apply for benefits to which they are entitled, either because they choose not to, or because they do not know that they are eligible.

The reality is that whole benefits system is being re-jigged, but the media/politics focus is on (a) the ‘scroungers’ and ‘fakers’ and (b) disability benefits. Unsurprisingly these badly presented and blurred themes have become one and the same in the minds of the general populous, and attacks on the disabled has risen substantially. As if to underline just how much people don’t understand the paradox they are perpetuating, the type of disabled who are bearing the brunt of these attacks are the ‘obviously’ disabled, adding even more trauma and difficulty to their already complex and difficult days.

There have been two investigative programs televised recently in the UK about this issue. They both uncovered the same issues.

First error: hiring an IT firm to do disability assessments. ATOS is a French company with no experience of working with disabilities. As a researcher myself I am all too aware of the dangers of an assessment like this even when it is undertaken by appropriately qualified professionals in the field. At the very least the assessments should be written by top healthcare experts in conjunction with top health psychologists. With the foundation of the project already throwing away all the crucial knowledge and complex ethics understanding which is required, of course it was going to be useless. No surprise there at all. The question to ask is why was there no effort to have any knowledge involved in this assessment at all?

An undercover primary care doctor found that: of the individuals assessed, allowing any more than 12 to 13% to remain on disability benefit would result in the assessor being assessed themselves because this is considered too many! This means that 87% of all individuals on disability benefit are going to be declared ‘fit for work’. Only a fraction of these will get any support.

This directly contravenes the Equality and Human Rights Commission’s (EHRC) ‘article 27’ which refers to work and employment of the disabled. It states that disabled people have the right to employment and that they should not be discriminated against, (for more information here’s the link), but that they are also to be “protected against forced or compulsory labour”. The British government agreed to this, (their one exclusion was with regard to the armed forces, which was challenged by the EHRC). And yet the British government is now openly contravening this across the board.

As many of you will know, CRPS is known in the USA as the ‘suicide disease’.  (I won’t go into why here as it would be a-whole-nother post, but if you want to know more about CRPS please take a look at this page). It concerns me hugely that seriously ill individuals who struggle daily to cope with their conditions will be put through a stressful process which will negatively impact further upon their health. The 87% (or 86% if you remove the ‘fakers’ percentage) declared fit for work whilst knowing that their conditions cannot cope with it are in a terrifying predicament. Particularly if the suddenly absent monetary support requires a number of working hours that cannot be built up slowly and steadily to reduce the inevitable health impact.

For anyone able-bodied who finds themselves in this situation the negative impact on the body is severe, so for someone with a chronic illness…, well, where do I start? Healthy people understandably experience depression under these circumstances. Chronically ill people experience depression, anxiety, fear, even terror because of the inevitable increase in their already severe symptoms. This is particularly the case for anyone who’s disability involves the nervous systems, autoimmunity, neurological deficits, neural rewiring/chemical imbalance, … in fact.. exactly those disabilities which get disregarded by these unthinkably blinkered directives.

Bearing that in mind, parliamentary figures that have recently come to light show that during the three years ending in October 2011, 31 people declared fit for work died during their appeals. However, The Guardian reported that Panorama’s investigation found that 32 people who were pronounced fit for work have subsequently died, not overall, ..that’s 32 people dying every week from January to August of 2011. There is no breakdown of this figure, so we currently do not know how many of those individuals died owing to stress induced health escalations, how many to more direct effects on physical health and how many committed suicide. But the mere existence of a death toll demographic is horrifying enough. Yet the tick-box assessments continue.

As a CRPS patient, suicide is sadly a familiar theme. Severe conditions which are nonetheless ‘invisible illnesses’, do result in suicide when the distressing day-to-day climb steps over into the impossible. Every human being can only take so much, and in the global online community we hear about fellow patients who have had some recent hiccup in their medical lives, (be it loss of meds, a knowledgeable doctor or financial support), and that they chose to step over that edge. Not because they wanted to die, but simply because they couldn’t continue to live in those worsened circumstances.

Many CRPS patients that I’ve spoken to have stood at the edge. To come back from there takes monstrous effort and huge strength of character. Those patients are not weak, they are strong beyond most people’s imaginings. Many patients live their lives with that edge always in sight.

Today I read a comment on an online post about these benefit changes which recognised the suicide risk involved. In response to that was a further comment from one patient who already knew of two young people in their area who had killed themselves as a result of the benefits changes.

Various individuals have started online petitions on the UK government website. I heard a few days ago that these petitions are repeatedly getting hacked and signatory’s names removed. I would like to post a link to these petitions so that you can have the opportunity to add your voice, and may well do so, but I am cynical about whether your voice would still be there at the end petition date. At this point it’s all beginning to feel a little Orwellian. (Later addition to this post: two petitions had finished recently, there is one still open until 1st November. I’ve included the link below so please please add your name before then, x)

Of course the foreign IT company is doing such a grand job of ripping vulnerable people’s lives apart that they have also been awarded the contract to assess with regards to the other disability benefit (Disability Living Allowance). This benefit does not depend on income as it is for any disabled person to put towards travel to appointments, hospital car park costs etc, which is why the amount awarded varies depending on how the disability affects each individual.

The recent media storm where journalists finally seem to be catching on to the idea that people are suffering as a result of this reform has enabled the word to get out, but is it enough? After so long with the general population getting the horrifically wrong idea that the disabled are scroungers, are they really going to take this enlightenment on board? Or are they going to think it’s some sort of ploy by the alleged disabled scroungers?

The media may well slip into silence again as the ATOS assessors are now being asked to sign the official secrets act. Unnecessary on top of their existing professional ethics, and unrequired for the years so far until the recent media nosiness into the behind-the-scene workings. ATOS claim this is normal procedure that’s been in place with other contracts for years, but the key point to note here is that it was not normal procedure for the Work Capability Assessment for years… but now it suddenly is.

Shockingly there is also a dastardly ‘clause 99’ in the Welfare Reform Act which stipulates that before a disabled person can appeal against a Department of Work and Pensions (DWP: the benefits department) refusal for benefit after assessment…. they must first get the DWP to reconsider it. Yes, that really is exactly as it sounds –if the DWP says no, you can ask nicely, but if they still say no then you are not allowed to appeal. No appeal. End of. If the assessor made an error, if your health condition has been misunderstood… tough…. there is no appeal. This was questioned in 2011 and the answer was clear:

“…to ensure that fewer people end up going to appeal and that there are fewer successful appeals, because long waits for successful appeals serve nobody’s purpose.” 

–          Chris Grayling, Minister of Work and Pensions

(Elle and the Auto Gnome says: “Ahem… serves no purpose? Except, of course, that of the genuinely disabled person….”)

Grayling expanded by saying that the intention was to get it right in the first place….

…Erm….is that why they hired an IT firm to do a tick-box version of a really complex healthcare/psych’ based assessment?

We can scream and shout at ATOS all we want, but they applied for the contract and won it. They are doing as requested. The government refuses to make available the full contract. With the Freedom of Information Act in place, this withholding of requested information is concerning, to say the least, but ATOS is doing what the government has told them to. And that is why it is so particularly terrifying.

But multiple charities and voices for the disabled are now finally getting heard above the white noise of ignorance and disinterestedness. It is notable that the British Medical Association (BMA) is now openly against the Work Capability Assessment. But with the assessments running since 2008 and due to end for 2014, what are our chances of a do-over?

What can we do to help these vulnerable people?

Here’s a letter to quickly download and send to your G.P. to ask for their support in opposing the inappropriate WCA, written by the Social Welfare Union,

Here’s the main official e-petition on the UK government’s website:  This petitioncloses on 1st November 2012. It is already number 11 on the petitions list, can we please get it into the top 10? Please ask your friends and family to sign this. It takes but a moment and they will be glad to help someone they, or someone close to them, cares about, x

Here’s the new petition link (added to this post August 19th, 2012) which asks for a more humane system than the one causing 32 deaths per week

I am aware also that DPAC is planning their own ATOS games to coincide with the Paralympics (Mon 27th – Fri 30th August), they have mega respect for the paralympians it is no slight on them, it’s their way of hounding ATOS.



Baumberg, B. (2012-08-07) ‘In defence of benefit take-up statistics’

Begg, A. (2012-08-03) ‘It’s not the benefits fraudsters who are targeted in the media, it’s the disabled’ in The Independent

Blog post on “Benefit Scrounging Scum: life in a broken bureaucracy with a bendy and borked body” (2012-08-03)(two authors, Sue and Kaliya, one of whom is a professional journalist)

Brennan, S (2012-07-31) ‘Sick and disabled people are being pushed off benefits at any cost’ in The Guardian

“Britain on the Sick” by Channel 4’s ‘Dispatches’,

Cassidy, S (2012-08-03) ‘Half a million disabled people may lose benefits under reforms’ in The Independent

Convention on the Rights of Persons with Disabilities, Office of the United Nations High Commissioner for Human Rights (pdf available via the following link…)

Disability and Equality Act 2010, UK Government website (,

“Disabled or Faking it” by BBC2’s ‘Panorama’,

Dunn, A (2012-08-02) ‘Don’t misuse your disability benefits – the DWP might’ in The Independent

Equality and Human Rights Commission, ‘Article 27: Work and Employment’,

Hundal, S. (2012-04-12) ‘EXCL: ATOS forces doctors into secrets act’

Income Support benefit, UK Government website (,

Malik, S. & Gentleman, A. (2012-04-12) ‘Private sector medical staff assessing benefit claims told to sign Official Secrets Act’ in The Guardian

Pollard, T (2012-08-02) Blog guest post by mental health charity ‘MIND’ who are working with other charities and the UK Government to try to make changes to the malfunctioning  assessment procedure

Poulton, S. (2012-05-25) ‘Oh dear, Dave. Now GPs have turned on you. Time for an exit strategy on the disabled, perhaps?’ in Mail Online

Scope CEO Blog (2012-07-30) ‘Watching the dispatches undercover footage’

Social Welfare Union clarification on the percentage of appeals which are successful, 2012-08-10, thank-you, x

Social Welfare Union (2012-08-05) ‘Old debate sheds further light on the right to appeal benefit decisions’

Social Welfare Union (2012-08-07) ‘Universal credit doesn’t help tenants off benefits and into work’

Social Welfare Union, (2012-08-05) ‘New disability tests will ‘cause suicides’ say disability campainers Disabled People Against Cuts (DPAC)’

Work Capability Assessment (WCA) list of tickbox directives,

Other links:

‘Thousands of disabled people have signed an open letter criticising their portrayal as “benefit scroungers” in the British media’ (2012-05-31)