And RIP Rhydian Fon James

How very sad to be writing two obituaries in a row. Two faces smiling out from this page together, the full stops to this blog.  The full stops to the work we did together. They are obituaries I always knew I would write. Both lived short, uncomfortable lives and both always knew they would.

Those of you who remember Broken of Britain, may not remember Rhydian. He was an economist, writer and political activist for Plaid Cymru http://www.theguardian.com/profile/rhydian-f-n-james
That's why I wanted to use the proof image above. Politics made Rhydian's heart race as it makes mine. I think he would have wanted me to use this picture.

In this picture, he looks capable, as he most certainly was. He looks passionate, which he was. And he looks political. Which he was. That he also looks disabled is incidental. I think he'd like that.

It was Rhydian who engaged the first politician to support sick and disabled people through the welfare reform bill 2010. He drafted the first early day motions (EDM) for Hywel Williams. I didn't know what an EDM was. He wrote clear, yet forensic pieces of journalism when the rest of us were still reeling at the headlines. He analysed the detail, picked at the flaws and fed constant ammunition to those banging drums and rallying troops online.

You might notice that none of Rhydian's articles mention that he had Friedreich's Ataxia. So perhaps I won't dwell on it here. Enough to say that following a life that made his heart race may not have been the most self-preserving choice. It is a degenerative nervous condition that slowly chips your life away. Rhydian knew that every day counted and chose to spend some of them as a warrior.

And maybe that's why Rhydian chose to campaign for others. Online, his condition was totally irrelvant. Online, his words spoke for themselves. Online, his unquestionable genius just was. There were many times over the years I found out what someone's condition was after months or years of knowing them and was utterly shocked. It taught me so much about the perceptions of disability and capability and how very wrong they usually were.

The people I met were hysterically funny, sharply cynical, searingly clever and focused on something more than the everyday. Their disabilities were irrelevant beyond the limitations they placed on their ability to produce the work they wanted to. Online, the world can be a level playing field, and I hope that gave Rhydian a sense of liberation for a while as it did me and so many others.

RIP Lucy Glennon (@lucytweeting)

I've just found out that Lucy Glennon (@lucytweeting) has passed away.

Those of you who knew Lucy will know that she was tireless in everything she did. Even when she was very, very tired. She always somehow found that last spoon to defend a friend or fight a wrong.

She was one of the first people I got to know on social media and she would often get in touch to see if anyone was writing about a particular disability story of the day or if we were "live-tweeting" a parliament debate.

I've met just a handful of people campaigning who simply march on, resolutely, no matter what obstacles are put in their way. "Over there, in the distance" is a condition so painful or cruel, they simply force themselves to look away. It is always there, yet never there. It controls everything they want to do, yet controls nothing they need to do.

That for me was Lucy. She couldn't bear injustice and fought it however tired she was that day. If it was no-one else's "job" it would be hers to speak for those she worried were voiceless.

I suppose because of her remarkable resolve, I thought of her condition, Recessive Dystrophic Epidermolysis Bullosa as something "over there" as well. We made each other laugh on dark days, shared recipes on Twitter and discussed  our dysfunctional bodies online in the hope it might inform others. But I didn't think of her as sick or vulnerable. I thought of her as a lion in a cute hat.

You can read more about Lucy's life here : http://benefitscroungingscum.blogspot.co.uk

You can donate to the Sohanna fund for EB fund here sohanaresearchfund.org
 

New Job

"I've agonised about how to write this post, but as with everything, honest and from the heart is always best. 

Those of you who love and trust me I hope, will be pleased. 

Those who doubt my intentions and goals and those with different goals to mine will almost certainly be critical, and, in a sense, I understand that response. If I didn't know me I might  be sceptical too.

I've devoted the last 6 years of my life to doing anything and everything I could to improve WCAs (Work Capability Assessments for ESA, Employment and Support Allowance)

I've negotiated with people I did and didn't want to, I've worked with any group or individual with a genuine concern for those experiencing the assessments. I've worked with media and politicians of all parties. My only concern has ever been for the people - like myself and some of you - going through the process of assessment. 

My own work assessment for sickness benefits (you can read about it here : http://diaryofabenefitscrounger.blogspot.co.uk/2010/10/how-sick-is-sick-enough.html was a ludicrous and unpleasant process from start to finish. The initial letter was threatening and scary, and the centre was totally inaccessible in the middle of a red no-stop route. The waiting room carpet was stained and smelled of urine. When I did get asked to go through, after a lengthy and nervous wait, it was into a small empty room, with a camera, grills on the windows and just a table with two chairs facing one another in an interrogational confrontation. 

Though my application was successful, the letter to confirm my "success" - being written off to a lifetime of £108 per week - was almost unintelligible even to my admittedly illness addled, but nonetheless, degree-educated brain. 

I didn't hear a thing from anyone throughout the process, which in total took me about 8 weeks - I was lucky, average waits have been 26 weeks. Half a year. The letter didn't even tell me how long the award was for. 

None of this is acceptable, none of it will ever tell us much about the capability of the person being assessed. With a toxic reputation amongst those who must claim it, those who administer it and those who report on it, none of the many Harrington/Litchfield recommendations appear to have led to the kind of change necessary for a fair and valid test. 

It is not inherently a good thing for Support Group numbers to be high. If some of those people who qualify would actually rather like to work, but are terrified of an intimidating and farcical system of support that actually leads to a life of fear of change. Being terrified of an assessment letter or experiencing actual anxiety and distress every time a brown envelope from the DWP falls through the door is never going to lead people to engage. I know, I wouldn't have dreamt of it. I was terrified of the brown envelopes myself and I hoped a sensible system could be in place before I ever had to go near another ESA assessment. However, it's a brave company that attempts to make reasonable adjustments for my kind of impairment and any that does will face many new challenges.

We are coming up to an election period. There will be a hiatus and a time to breathe and take stock. There is a new provider, MAXIMUS and the new contract to provide WCAs as well as a wider range of disability benefit assessments.  It is considerably more costly than the old Atos contract. Simply put, there will be more money, and they always say "follow the money". I'm not overly concerned with the stuff for myself, but it can be the difference between success and failure in the "real world".

If there was ever a time to get significant and valuable changes to what now seems universally accepted to be a system that is in serious need of better delivery, it is now. And delivery does matter. It does matter that people are treated with respect, it does matter that people with already often difficult and challenging regimes are not put through any more stress or anxiety than they need to be.

Is it enough to achieve procedural change? Many think not and both Harrington and Litchfield have asked that change comes more quickly and thoroughly. Many are abolitionists - - the latest Work and Pensions Committee report recommends fundamental root and branch reform of the whole process and Litchfield seems to believe that further change will inevitably come too. 

But it does matter that there are accessible formats in order that everyone can   more readily and easily understand the various requirements for support – including documents, forms and letters. It does matter that the assessments feel collaborative, rather than intimidating and that people get a chance to engage properly in the process. It matters that people who want to work, who can work and need support to do so, are assessed in a way that such support can materialise, whatever the impairment. But that signposting and joined up approach simply doesn't exist at present. The two are still entirely separate.

And so to the point. From today, I will be responsible for making sure that as many of those improvements are made during this period of change and pause as possible. MAXIMUS have asked me to be their Head of Customer Experience, and it seems, have given me fairly free reign to devise a strategy to bring about a wide range of improvements to the service from a customer perspective.

The job covers all aspects of customer experience and the easiest thing I can do is copy the job description below.  I hope anyone I've already lost to explosions of horror might at least take a look at it and imagine me doing the job. It is not insignificant in scope. 

Of course there are considerable benefits to both myself and MAXIMUS in this development. I will be giving the same 300% passion and commitment to them that I have been giving to campaigning. I won't be writing about them, I'll be working with them. 

Crucially, it's a campaigner's job  to change things, not just to make a lot of noise. That noise is supposed to lead society, stakeholders and commentators to the point where real change can be achieved. 

In the last 6 years, I never felt that was the case, but at this moment in time, finding myself in this exceptionally unexpected situation, I simply believe that I can do more good now, here, by doing this, than I can do with all of my other interests. 

Whilst I have to make an enormous - almost cosmic - mindset shift to take this direction, MAXIMUS also have to bring me into their trust and with very little to go on, accept that I will attempt to do the job as skilfully and imaginatively as I can. My past opinions have hardly been filtered. Everyone knows that I'm obsessive about changing this, Giving me a job to keep me quiet would be to not know me at all. 

I've had just 3 weeks to think about all of this and come to terms with it. I've already done my worrying and wondering and weighing up. I've already had to decide to change absolutely every last thing about my life and take this step. My husband will give up work - he's already resigned to support me and care for us all, amazing man. I will be working full time, I will lose almost every bit of support I currently get from the social system, I will face criticism, I might hurt people who are disappointed. These are all huge considerations.

But I have to try to finish what I started. MAXIMUS have the contract. Things are being re-thought now. The election period is coming now. The job was available now. 

Someone is going to do it. I can do it, with all of my knowledge and personal experience of what is wrong with the system at the moment and a rich research background to draw on from the Spartacus Network reports and all of the other amazing research done by DPOs, charities, individuals, groups and academics over the last few years. 

If everything continues as before, if change is achingly slow and the reputation of ESA remains as toxic as it ever was, then by me taking on this job, it won't be because no-one cared. It won't be because no-one knew what needed to be done. I believe that I know what to do and there's no doubt that I care. Harrington and Litchfield have recommended what to do, the Work and Pensions Committee have recommended what to do. My own Spartacus Network and many others have recommended what to do. 

Now it just needs to be done. Positive change will take time, but I believe I can help effect that change.  Whatever becomes of ESA and WCAs and whatever party wins power and however public opinion waxes and wanes, whatever assessment may or may not exist now and in the future, it has to be as good as it can be. 

Whoever administers the contract - and now it will be MAXIMUS - if they can make it caring, dignified and clear to understand, whilst making it very clear that decisions are ultimately not taken by them, but by the DWP, then there is no reason for this to be a toxic contract. Clearly, I hope it won't be. I hope I can make a difference, and I'm confident that if I can't, then no-one could have. 

My life will change completely, as will the lives of my family. Yet again, they will throw every last card up into the air and support me to do what I need to do. And I do need to at least try to do it. I need to see if WCAs can become something people don't dread or disdain. But the thing that won't change is my commitment to trying to get it right. That will never change whoever I work for and whatever I do."

Job Description 

JOB DESCRIPTION

Job Title:                   Head of Customer Experience
Reporting to:            Service Management and Improvement Director

Purpose of the role

Reporting to the Service Management and Improvement Director, the Head of Customer Experience will continuously appraise the various aspects of our service to deliver and focus improvements from the perspective of the customer going through the experience.

Key Accountabilities

Define and communicate the new Customer Experience vision by fully engaging with internal colleagues as well external parties including the Customer Reference Group, and other interested stakeholders.
Outline “the journey” to achieve the customer experience vision including key landmarks and measures of success.
Undertake research and analysis activities to build a first-hand understanding of the current customer experience as seen through the claimants’ eyes, across all touch points.  Establish an improvement cycle by formalising regular inputs from stakeholders, claimant complaints received, quality assurance findings, and other sources.
In collaboration with the leadership team, managers, IT and other relevant departments identify potential service improvements that would enhance the experience of customers. This will require the Head of Customer Experience to work collaboratively with all business leads and stakeholders and contribute to the development of business cases for improvements.
Play an ambassadorial role in developing a stronger “customer experience” mind-set and culture within the business, ensuring that all employees are absolutely consistent in their understanding of what their contribution is to the customer experience.
Report on the activities conducted, summary of findings and recommendations made on a monthly basis.
Continue to develop practices and build a collaborative network of internal and external stakeholders with the goal of establishing a strong reputation for customer focus and improvement.

CANDIDATE PROFILE

Essential Experience

• Able to demonstrate experience in a leadership role with an established relevant network in the sector and a reputation for delivering exceptional “customer experience.”
• Strategic planning & delivery leadership.
• Experience of operational management
• Project leadership on a multi-site, multi-stakeholder level

Competencies

• Creativity to innovate
• Analytical, research orientated
• Commercial acumen – justifying investment
• Customer engagement/focus
• Project management – delivery focussed
• Change orientated
• Influencing skills
• Attention to detail
• Communication & presentation skills
• Decisive leadership
• Inspirational
• Results orientated

Just because I'm a Hypocrite, doesn't make Me Wrong

I know I'm an inverse snob. I doubt the ability of aristocrats to run the country for the common good. Actually, that's not true. I doubt the ability of Tories to run the country for the common good. I doubt their will to and their motives too.

I think in my heart that Osborne and Cameron are privileged and arrogant and incapable of empathising with about 99.8% of their own public.

If it placates my critics at all, I know that I do this, I know that it's unreasonable and I know that it will never quite be kicked from my council estate and heavily chipped shoulder.

I also know that a long line of Labour politicians have come up through very similar backgrounds and I didn't doubt their ability to understand my life. Three of the most aristocratic of all were my very favourites.

So I'm a hypocrite.

But come on! They do absolutely nothing to confound my prejudices.

It's like they actually attempt to be as aristocratic as they possibly can.

It seems champagne quaffing has doubled since Cameron came to No. 10 B40sNCnCIAE5m6f.jpg

It's perfectly possible to google pictures of our Prime Minister, Chancellor of the Exchequer and Mayor of London in Auber-elite Bullingdon shirt and tails.  http://diaryofabenefitscrounger.blogspot.co.uk/2014/11/viva-la-geek.html

Osborne discussed the Autumn Statement in which he wanted to return spending levels to those of 1930, from a Bentley factory.

Something that sounded like quite a good idea - the Character Innovation Fund - ended up being apparently about "instilling a military ethos" in young people. All very Dad's army.
http://www.quaker.org.uk/news/quakers-object-millions-funding-developing-military-ethos-classrooms

Our Prime Minister has averaged 5 holidays a year. Whilst not even attempting to look like running the country taxes him even a little bit. (Pun intended) David-Cameron.jpg

It's just all so very depressing. I feel like I've inadvertently wandered into an Edwardian Novel. The poor laws are alive and kicking utterly trumped by about 7 of IDS favourite cruelties. We're blaming immigrants just like they do in Tressell's Ragged Trousered Philanthropist 100 years ago.

Can't we just do the 60s again instead and pretend this was just all one awful LSD trip?

I Know My Trending Hashtags

I don't know much about tech - several of my friends will splutter at this understatement.

I also don't know much about social media, despite popular opinion.

But I do know about trending hashtags. I've used them to my advantage many, many times and have had many top trending tags, including one global one.

I've noticed the anti-leftie rapid response unit are claiming that #CameronMustGo has only trended for 5 days solidly because a small, dedicated group of lefties have been tweeting it non-stop, even creating multiple accounts to do so.

THIS ISN'T POSSIBLE.

It's true that a tag can initially trend with relatively few accounts, but the only way it can continue to trend is if new accounts tweet consistently. Volume does NOT create a trend, only unique users.

You might want to share this to counter the propaganda.

And if you doubt what I say is true, do you honestly think if hashtags could be faked so easily Amazon and Apple wouldn't be top trending every day? Or similarly, that the Labour Party wouldn't ensure that such a convenient tag was right up there too?

The Unum Paradox

Those of you who saw my article about an invitation to speak at a Unum event may know that the responses in the comment thread were fairly inconclusive. About 50% of the responses said engagement was key and to go, the others said they were just using me and there was a danger my credibility would be compromised.

In the end I decided those worried for me might underestimate my Machiavellian streak and that as long as I read from a carefully written speech and posted it here afterwards, it would probably do more good than harm.

So for those who are interested, a copy of the speech I gave is below. I think on balance it was valuable. There was a good mix of 3rd sector and corporate representatives though I can't share who as the meeting was held under Chatham House rules. Nonetheless I insisted on sharing my speech with you all and the Unum representatives readily agreed.

I hope you think that what I said was valuable.

"It's was a very, very, difficult decision for me to come here today. Not physically, but ethically. Rightly or wrongly, the sick and disabled people and their organisations I usually speak to, believe that the corporate world is a cruel and callous one. One concerned only with profit and tax receipts. Can we really blame them after the many mistakes of the last decade or so? There are few companies that know this better than Unum.

But we can't stay in that place of mutual mistrust and justifiable fear forever. At some point, both worlds have to be prepared to listen to each other and find a better way forward. People will only suffer until we do.

That’s why, after much deliberation, I decided to accept the invitation to come here and speak today. 2 hours ago I was in a hospital bed, hooked up to an IV feed pumping calories directly to my heart. I didn’t look like this either. I've spent 8 weeks of the previous 12 in hospital, I've had major surgery to remove yet another 50cms of my bowel. I have less bowel than I need to sustain myself with food alone and I've had over 36 blockages causing obstruction and terrible symptoms.

However, in those 3 months, I’ve written 28 articles, given 4 media interviews, taken part in one radio show, advised a TV channel on an inequality programme they are making, spoken at 2 events and attended one gala dinner. I have had 3 meetings with politicians and supported countless disability campaigns through social media. All from a hospital bed.

If anything proves that we can enable people with long term illnesses to achieve fulfilling work lives, it's this. There are ways of enabling those who choose (emphasis) to continue to work to do so, no matter how limiting their conditions. I am entirely my own boss, I can choose when I can manage to work and when I can't. I can pace myself, and set my own deadlines. If I can do it, then so can an employer. I know, because I have enabled hundreds of sick and disabled people to do exactly the same. If I can urge you all to do just one thing after today, please read the comments below an article on my blog, (the Diary of a Benefit Scrounger) entitled “I am Spartacus and I….." I believe it will transform the way you see this issue.

But we are the first generation who must deal with it. Just 50 years ago, people like me would have died. But as the briefing to this event pointed out, we can now ensure that people live with serious illnesses indefinitely and up to 50% of 50 year olds will have at least one serious long term condition. However, we can’t yet always do it comfortably.

Employers must learn to address these problems much more creatively than we do at the moment. Work must be totally flexible - often flexitime, part-time or annualised hours are not enough. We must enable home working much more commonly. Those who need to work in “Slivers of time" must retain the protections and rights of employees on permanent contracts. Finally, employers must learn that retaining expertise and experience can be compatible with large chunks of sickness absence or considerable reasonable adjustments. It just doesn’t make any financial sense to lose the best employees, simply because they can no longer commit to everything they did previously.

For politicians, they must ensure that there are no penalties and only incentives to work. Universal Credit would NOT have done this adequately, despite the rhetoric. They must make schemes such as Access to Work available more freely, though sadly we have seen an erosion of A2W rather than an increase. They must allow quick, easy returns to social security support if work fails and they should consider some kind of portable lifelong fund for permanent or degenerative conditions that could iron out some of the roller coaster of sporadic ability.

(Emphasis, key point) MOST IMPORTANTLY, AND I CAN’T STRESS THIS ENOUGH, THEY MUST TOTALLY CHANGE THEIR OPINIONS AND START TO UNDERSTAND THAT PEOPLE WILL IN FACT GENERALLY STAY IN WORK LONGER THAN THEY SHOULD, RETURN TO WORK SOONER THAN THEY SHOULD AND ARE THE BEST JUDGES OF THEIR OWN IMPAIRMENTS. UNTIL THIS IS THE CASE, UNTIL WE STOP TAKING SNEERINGLY OF “ILLNESS BEHAVIOUR” AND MALINGERING NOTHING ELSE WILL MAKE ANY DIFFERENCE AT ALL.
I've learnt that the gulf between academic or political analysis of the employment market and long term illness, and lived experience are very different worlds. As a campaigner and someone living with a serious long term illness myself, I have a virtually unique perspective, as I’ve also attempted to produce academic analysis. I know myself that good intentions sometimes evaporate when crowbarred into words on a page. Conventions can dilute passion until it’s all but lost. Perhaps most of all, lengthy chapters of heart and soul can be misrepresented in a media world concerned only with soundbites.

How does it REALLY feel to be in constant pain? We might think we know, but we don’t. I have effectively had Salmonella for 31 years. But human nature doesn’t allow us to believe that could be possible. Sometimes I struggle to believe it myself. Yet I’ve lost count of the times close friends or family have told me of a recent food poisoning in sheer horror. They will say “I thought I was going to die, I was clammy and shivering, I passed out on the bathroom floor. I must have been to the toilet 15 times and I was sick until my throat bled.” And they simply can’t bring themselves to believe that I feel like that every single day. Even people who have seen me exactly as they describe countless times can’t believe that it’s really that bad all of the time. We’re programmed to forget severe pain - If we weren’t no-one would ever have a second baby!!
But the fact is that no amount of evidence or statistics or research - or even good intentions - can enable someone who has lived a pain free, healthy life to truly understand those who have not.

The single most important thing we could do is let go of our paternalistic and sometimes judgemental attitudes to ill health and embrace the vast experience and creativity of those trying to be the best they can. If an employee has decades of a previously unblemished sickness absence record, it is extremely unlikely that they became a hypochondriac overnight. If they insist they need an adjustment you believe is unnecessary, it’s vital to stop and ask ourselves if we can really understand the need.

The ONLY (emphasis) way to design and implement schemes or policies that will work for people with long term illnesses is to co-produce them, ensuring that the people who really know what is needed have an influential say in development."

Comments were invited and discussed after the speeches and I pointed out that fatigue is the most cited factor preventing people with long term illnesses from taking or continuing with work. I said that pain can sometimes be treated, symptoms sometimes controlled, but there is just no defence against the often paralysing fatigue that is present in so many long term conditions. Simply having a comfortable space or two that staff can use to rest or even sleep in for a while could help many to increase their capabilities. It would also help with the "brain-fog" that so often accompanies fatigue, allowing someone to return fresher and more productive later in the day.

. 

Disability Innocence

Children have no guile whatsoever when they first come across disability. Perhaps a "person with wheels", or a lovely doggy with the "person with funny eyes". They might stare in curiosity at "that man's funny face" or ask an embarrassed parent "Why has that child got no hair?"

And the key point I wanted to make in this article is glaring out in that last example. Embarrassed parent.

Children are totally innocent. They haven't learned to judge, it will be years before they know what discrimination or prejudice are. For those first few precious years, they are simply curious. It's their job, it's how they learn.

So little Tarquin or Kylie stare at me on the days I use a wheelchair or supermarket scooter with no shame at all. Shame is something adults create and in turn, inflict.

"Tarquin!! Come away darling, it's rude to stare! NO darling, the nice lady won't give you a ride"
"Kylie! Get 'ere NOW!!! Sorry darlin'. (To me) FUKSAKE, KYLES, NOWWWW".

And so we teach our children not to speak to anyone "different". We teach them that it's rude to even look at people with disabilities. We teach them not to learn about them by asking the questions that stem from their natural, childlike, curiosity.

Is it any wonder we grow into adults uncomfortable around any kind of "difference"?

This lovely list of children's books from Scope make great gifts for young children, encouraging their innocence and natural acceptance. I'm sure you'll be buying Xmas presents in the next few weeks and I'm sure many of them will be for young children, so do consider getting them one as a stocking filler?

Click here to go straight to the website  :http://bit.ly/1qFgHAz 

Thanks to Scope for sharing it.

Another friend, Virginia Moffat (@aroomofmyown) recommended this book too with a central character with a disability : http://www.amazon.co.uk/Girl-With-A-White-Dog/dp/1846471818 …

But What Would Labour Do?

As we gear up for the general election campaign, I've lost count of how many left leaning voters have told me that Labour are no longer a centre left party/are exactly the same as the Tories/are part of the neoliberal consensus etc etc.

Certainly, there are many things about the modern day Labour party I'm not proud of. If anyone knew just how frustrating I have found my dealings with them, how fiercely I've fought them on social security issues and how cross I am about the things I haven't been able to change, no-one would accuse me of naivety in the comment thread. Sadly, most won't know and will accuse.

But to say Labour would be no better than this coalition is just bizarre. It doesn't matter how we look at it or what justification we use there are only 2 parties in the UK that can win a general election, Labour and the Conservatives. All the while we retain the illogical first-past-the-post system we have no choice but to accept this. If we don't, we allow the Tories another 5 years by default.

I absolutely guarantee that my comment thread will be full of Iraq, trident, 10p tax rates and PFI, but I've just never understood why progressives insist on only seeing the bad yet dismiss all the good.

So for the record, the following list are the policies Labour have announced for 2015 so far. Under absolutely no definition could this list be thought of as right wing. None. Is it perfect? Of course not. Do I wish they would go further? Of course I do. Will they stick to every one if they win in 2015? None of us can possibly know. Sadly, you still can't get crystal balls on Amazon.

But the list represents the progressive Labour party we've had for decades. Doubt them, push them, hold them to account, but if you want the Tories out and you live in a marginal seat, voting for anyone but Labour will get you exactly what you most fear. 5 more years of Cameron.

-An £8 minimum wage

-Fight for a living wage 

-Repeal Health and Social Care act

-Repeal the Gagging law

-Repeal the bedroom tax.

-An end to inaccessible WCA centres

-200,000 new homes pa by 2020

-A mansion tax

-A freeze on energy bills 

-Guaranteed jobs or training for young people out of work for a year or longer

-A clampdown on exploitative landlords & more stable, secure rental contracts

-25 hours of free childcare for 3 & 4 year olds 

-A clampdown on exploitative zero-hours contracts.

-Integration of health and social care

-Maximum 48 hour wait to see a GP

-Mental health training for all NHS staff

-A reformed WCA overseen by sick and disabled people

-Penalties for every mistake Maximus make

-ESA claimants out of the work prog

-Reverse the 45p tax rate back to 50p

-A clampdown on payday lenders and tax avoidance

-Increasing a tax on bankers bonuses

Viva la Geek!

I'll take the geek thanks. When it comes to voting, obviously. 

A young Ed Miliband with a touch of the Harry Potter about him

David Cameron (Top row, 2nd from left) and Boris Johnson (Bottom right)

These 2 images alone ought to see Labour with a 20 point lead in the polls. 

The Unwanted Guests

I try incredibly hard not to air any dirty linen in public, but I am totally sick and tired (no pun intended) of self professed "real disabled people" who insist on patronising, belittling and criticising those disabled through long term illness. Even of those with no disability at all who ruminate and opine on how I should classify myself and what I should be entitled to. So called "experts" covering their enormous prejudice with a fig leaf of academic lexicology.

For decades, thousands of individuals and hundreds of disabled people's organisations (DPOs) have campaigned fiercely and justifiably for the empowerment and inclusion of people with physical impairments. Using the social model of disability that states people are only disabled by the rigidity and stigmas imposed by society rather than the various impairments they live with, this has led to huge improvements in the way people with disabilities live their lives. A focus on independent living and mainstreaming has opened up the world for many who were previously written off.

But in the last few years, those of us most under attack from the current political obsession with "welfare reforms" have found a voice too. We are merely an unwell needle in a haystack of disability, yet it would appear we threaten the old school disproportionately. Concerned laments and wails of outrage ring out each time any of us dare to say anything at all. No matter that our livelihoods are under attack, our homes suddenly insecure, our health threatened still further by ignorant politicians. Should we dare to try to fight for our own survival, we meet a barrage of insults and are told off for "speaking for all disabled people". Which is ironic as that's exactly what those who are most critical  have done for decades.

I've been regularly and insistently assured that the social model of disability applies to me just as it does to those with congenital or physical impairments, yet how does society disabled me? Even if we lived in a utopia of inclusion and acceptance, I'd still vomit on my bosses shoes and spend most of my day in the toilet. An acceptance that there is any medical element at all to any disabilities at all stems from the fierce opposition those with physical disabilities put up to being "medicalised" and dismissed throughout history.

And it is utterly clear that these old schoolers do not want to be associated with us poorly people at all. They will jump up and down in outrage at this, deny it forcefully, but absolutely everything they do and everything they write betrays how they really feel. there have even been discussions about "separating us out" from disabled people and removing entirely the support we rely on if we cannot work in a self-supporting way. They criticise the language we use, the way we perceive ourselves, our symptoms, our fears and our aims. They have called us "fake disabled" "lazy and workshy", some have even accused us of wanting them killed at birth or re-institutionalised. How can there be any kind of sensible debate with accusations like that bouncing around every word we dare to utter?

The simple truth is that we are the first generation to benefit from enormous medical advances that have saved the lives of those who would previously have died young from serious illnesses. But we haven't yet learnt to do it comfortably or adapted to incorporate the skills of those affected. From distancing from us entirely to criticising every word we say, the old schoolers have proved very grudging hosts to this particular party.

But here we are, invited or not and we're here to stay. Over the next few decades, the proportion of those disabled by illness will increase and we will need to find a new discourse to explain our challenges. A post-social model if you will. One that accepts that there is a medical element to some disabilities and it doesn't threaten the whole to acknowledge it. One that faces up to the barely veiled sneering they have approached us with so far and tries to genuinely find ways to move forward. How utterly ironic that those who have fought so hard and so long for inclusion now feel much more comfortable excluding the nasty, untidy impairments that don't quite fit with their view of the world.

If we can't manage to make the transition towards this basic alliance, perhaps the least we could do is stop shooting off on a hair trigger every time someone dares to express their own issues and concerns. Perhaps we can learn that just because one person holds a particular opinion,  they don't speak for anyone else. However, should that opinion become very popular and should many people choose to read those opinions and share them - of their own free will - then all we can do is accept that there really are serious issues that led to them being expressed.

DWP admits investigating 60 deaths since 2012

Enormous credit to John Pring for the unremitting pressure he has put on the DWP through Freedom of Information requests. This one has uncovered that the DWP have investigated SIXTY DWP related deaths since 2012. As a John McCardle from the campaign group Black Triangle points out, if the government had caused an accident in which 60 people had died, there would be a public outcry. The Prime Minister would almost certainly have to resign for being involved in the deaths of 60 of his citizens.

If this story isn't picked up by the mainstream media, they are as complicit in the outrageous cover up of this crisis as Iain Duncan Smith himself.

You can read the full story here : http://disabilitynewsservice.com/2014/11/dwp-admits-investigating-60-benefit-related-deaths-since-2012/ …

14

Nov 2014

DWP admits investigating 60 benefit-related deaths since 2012

By john pring

"The Department for Work and Pensions (DWP) has carried out 60 secret reviews into benefit-related deaths in less than three years, Disability News Service (DNS) can reveal.

DWP released the figures in response to a series of Freedom of Information Act (FoI) requests by DNS........

Who Will Watch the Watchmen? An Open Letter to John Bercow

Dear John Bercow,

I was incredibly naive when I started campaigning for the rights of people with long term health conditions and disabilities. 

I believed passionately in democracy and that here in the UK, we had one of the best political systems in the world. 

I had always believed there were strict rules governing MPs and that they were held to account by customs and conventions that had served us for centuries. Sadly, that naivety is long gone. 

Over the last 4 years, I've learnt that democracy is merely an illusion. I've learnt that a politician can do or say virtually anything he or she likes and no-one will do anything about it at all. 

In the case of Iain Duncan-Smith, we have seen the results of a failure to govern the governors as never before. He has lied - not "misled" or "misdirected" - to parliament repeatedly. He has lied about who is affected by his "reforms". He has lied about who is protected from them. He has lied about how much they have saved the treasury and he has lied about their efficacy. He has lied about the level of support for his changes and lied about the timescales of their delivery. 

The results of his lies are clear for all to see. Vulnerable people he promised to support go hungry or are left without care or security. Nearly a million people have been driven to foodbanks. Homelessness has risen, the benefits bill has risen and the housing bill has risen. Sanctions have soared - over 500% in the case of those too unwell to work - and a fiscal black hole of billions is becoming apparent at the treasury as every one of his major schemes grinds to a halt. Universal credit, Employment and Support Allowance, Personal Independence payments, all have failed, leaving millions stuck in limbo.

Yet still Mr Duncan-Smith lies and still his lies go unchallenged. 

This petition https://you.38degrees.org.uk/petitions/investigate-ids-for-lies calls on parliament to investigate those lies and hold a full and transparent enquiry into his conduct. He has even repeatedly bullied the media not to hold him to account, can he bully you too? Is there no-one prepared to challenge this man and stop his inhumanity? 

Campaigners will never rest until the scale of this man's failures are clearly exposed to the public. Until his dishonesty is fully revealed. He will not be reshuffled or sent quietly away to "spend more time with his family". No matter how long it takes, Iain Duncan-Smith will be shown as the cruel bully he is.

You could choose to make sure that happens sooner rather than later, before more thousands of lives are ruined by his incompetence and lies. You have the power to restore at least some of the democracy we have lost. But make no mistake, now or in the future, it will happen. I and many like me will make sure of it. 

Readers can sign the petition here https://you.38degrees.org.uk/petitions/investigate-ids-for-lies

Opinions Please

Ah, decisions, decisions.

My very first tweet about Maximus last week elicited an almost immediate email from their PR director asking to meet me for a "chat". He spent several paragraphs persuading me that Maximus in the UK was an entirely separate company to the Maximus in the US so roundly exposed by the dedicated disability journalist John Pring.

You all know I believe in engagement whenever it has even a chance of making things better for sick and disabled people. You also all know that I vowed years ago I would never become one of those people who believe their own opinion is more important than the opinions of those they claim to represent. I will never sneak around in secret making deals and suggestions that haven't come from you. I will never take anyone's money or tempting offers of personal gain in order that you can always be sure what I write isn't compromised by anyone or anything else.

A long time ago, the PR boss at Unum got in touch. I met with him despite much personal anxiety and he told me everything the Maximus guy said last week. (Which gave me a wry smile. If I'd known they were all so saintly, I could have given this up years ago ;))

I've stayed in contact with the Unum guy and I do believe it has helped us several times. I've also long been in touch with their counterpart at Atos who has often been able to clarify things or even help me to oppose IDS and the DWP

But my Daddy always said "Watch the tiger when it's licking your ear". Seriously, he must have said it several times a week my entire life. I'm far from silly or gullible when it comes to politics. I'm well
aware that the only reason these men bother with me is to improve their own reputation or counter
some of the toxicity of the disability debate in the UK. I ve always believed that as long as it benefits us, there is no harm and I've always thought very hard before using anything they've told me.

But later this month, Unum have asked me to attend and speak at an event they're organising on the NHS aiming for more focus on prevention and less only on cure. This is something I feel very passionately about, and if me speaking could change the way healthcare is delivered for the better, then it seems pointless to refuse just because I might find the hosts distasteful. I am told that there will be attendees from the corporate world that campaigners like me often struggle to reach.

So as usual when these things crop up, I thought I'd leave the decision to all of you. Of course Unum want more prevention, it would mean fewer claims they have to pay out on, but I very much want more preventative action too, so I can't see why it matters who does the inviting. Of course, they want to be able to say "Ah, but Sue Marsh is coming, see how much we've changed." But I'm not against being used if the using goes both ways.

I will never be corrupted by these men and I will never be less than 100% honest when I discuss them, but if you all think it's a matter of principle, then I'll respect that view. If you think something could be achieved by having our view represented in theses kind of circles for once, then I'll gladly attend and do my best for all of us.

I'd be grateful as ever, if you could leave your views in the comment thread below.

Grazing

I am grazing.

You will think it is the dream life. I am struggling with my rebellious bowels in a kind of crocodile-esque death-thrash. I have to be ingenious with my induction of calories to the point of a masters degree in nutrition.

I have to ingest thousands of calories a day to have a chance that enough will cling to the edges and think fat. Maybe 3 or 4 thousand calories a day gives me some chance of simply maintaining this precarious 38 kilos I'm dicing with.

The TPN (total parenteral nutrition or IV feed, I'll stop explaining it soon honest) looks very likely as clearly this kind of lifestyle isn't sustainable or desirable. However much you much you might think it would be.

So, I have to have a steady and extremely appealing list of delicious high cal treats to convince me to keep munching, cow-like, stuffing my little foie-gras liver. At the same time, these endless banquets of tapas and sugar need to leave so little residue as to pretend they were almost never there at all. I need to sneak the calories in, hidden behind loops and valves and whatnots, trick my guts into not noticing.

But even more ingeniously, I can't just munch on additives and chemicals and false cheese. Nope. Whatever I get has to be the "made-in-someone's-kitchen" variety, ergo the most expensive in almost all cases. If I don't follow this crucial rule or try to fudge it, the whole exercise is pointless anyway as it just makes me more ill. So basically I need a healthy, unhealthy diet with thousands of calories and no residue. I challenge the best dietitians to better mine. When I can bring myself to do it properly.

On the odd quiet month where there might be a little more about for good food I might make sure I get a grazing selection twice in the month. This is nowhere near enough, I need about 2 or 3 a week every week.

So favorite examples would be a rocking cheese plate. Nibbles on high cal cheese and barely-there water biscuits with the odd grape as a treat if I'm feeling rebellious. Homemade fudge, ice creams of enormous cream and sugar content, honeycomb, fruit jellies drenched in sugar, fresh squeezed lemon and honey with hot water (and a pinch of salt for the electrolytes. Add ginger and garlic & chicken stock for a super-food broth.

Marshmallows, jelly babies, jelly beans, bruschetta type crackers, antipasti under oil in jars. mop up the oil too. I have found these tiny hot red chillies stuffed with anchovy paste so salty it makes your eyes water. They're suspended in a chili oil  (I need lots of salt too.) Cured hams like parma or prosciutto. Toast on a light bread like a bloomer. Piled with as much butter and jam/marmalade/honey/chocolate spread as I can balance on. Dipping tea biscuits like Rich Tea in golden syrup because it's yummy. Having tea-dunking biscuits by you at all times so you can dunk a biscuit to dissolvey mush pretty much hourly.

For food, mashed potato or the middle of jacket potatoes with butter and cheese sauce, bacon sandwiches with crappy white bread. In this instance, the crappier the better. Stuffed pasta parcels with butter and fresh sage, tinned fish of all kinds, (quick pause there as 10 year old came into bedroom to give me an olive. We all play this game.) When they go to the fun fair, they wouldn't dream of coming home without a candy floss for Mummy.

Croissants with lots of french butter and as much jam/marmalade/honey/chocolate spread as I can balance on (yep, that's a theme. Balancing). French butter is an even-higher-level treat but if I have some I pretty much put it on everything I eat until it's gone. Smoked salmon, avocado, bananas, yoghurt, custard, rice pudding (you guessed it, with as much extra sugar or cream, preferably both, I can tolerate.)

If energy allows, and this isn't really one of those periods, stuck as I am in bed in a sort of in-hospital-from-home limbo until I can be made a little more stable, I make soup. Pretty much from anything I have combined with chicken stock, onions and some spices or herbs. Whizzed up, most delicious veg are fair game and this is where I get the most nutrients. I can't even eat much in the way of fruit or veg, so this way ensures I get all the nutrients I can from what I can have. Ditto casseroles. I can steer clear of most of the meat in a casserole, eat the very soft veg like parsnips or carrots and get all the goodness from the meat and the vegetables in the gravy.

But now we're in the functioning-relatively-normally-if-able-to-eat-hot meals-stage.

At the moment, if I can't keep it by my bed, or get it in the fewest movements possible from a fridge, cupboard or freezer, it's not really much use to me.

Nothing I need to eat is on most people's necessity list. Every last item is deemed a "treat" or a "luxury". No-one needs to buy peanut butter ice-ream and salted caramel, the idea is so far from what we learn about absolutely everything that resembles a "normal" diet. We're programmed to think of these foods as "bad" or "fattening" or "unhealthy". The stigma is huge.

So imagine if you will you're a work colleague of Dave's or a friend from the school gates and you come round for an evening. You know the wife/new acquaintance is extremely unwell, but not much more than that. You know it's her bowels and she has lots of operations. You go round to visit and she spends most of the night sucking sweets, eating ice ream, nibbling cheese and parbaking croissants. You'd almost certainly conclude any problems she might have were of her own making! That is so far from the idea of "healthy", I usually end up giving dietitians recipes.

You have to eat often! As soon as symptoms allow, you're right back at it. So you can't really ever be far from your grazing stash without planning. It's not just me. I've found a whole world on social media who have to eat like this every day and know exactly what I'm talking about. People who effectively stuck in bed, people with poor mobility, people who are very isolated and have little help at home, all of whom are a little too old or frail or unwell to keep weight on easily.

I always think to myself that if I was rich, it would be fine. I'd potter through farmer's markets and gorgeous little deli's in cobbled high streets buying various beautifully wrapped little mouthfuls of gorgeousness. I'd hover from Rosette to Michelin star eating delicate mouthfuls of perfection that even I can eat 5 courses of and still fancy a kebab. I'd sip high-calorie cocktails and eat Belgian chocolates for breakfast.

But as it is, I generally feel too guilty to do it, even though I need to. It's hard to spend lots of money on rubbish you won't let your kids eat. It's hard for 50% of the budget to go on your capricious whims or fancies of the day. On food you might not even get around to managing or that reappears rather sooner than it needed to.

As a final word to all high end, high cal food manufacturers : Lots of people who literally can't punch their way out of a paper bag for one reason or another buy your products. We can just about manage  folded paper packets and rippable foil, but frankly, anything more complicated or durable than that will effectively bar us from actually eating it at all. If it needs a knife, pair of scissors or brute strength, lots of us won't even be buying it.

So I manage to have a condition where the thing I have to do is sit in bed all day every day, preferably waited on hand and foot with people literally peeling my grapes and braving great quests to get exactly the brand or type of something I desire. Talk about a princess. It's a worry really.

So How Am I Now?

Regular Twitter followers will know that I finally managed to get home on Monday. After all of the tears, meltdowns, loneliness and fear, I finally made it through to the other side.

My operation was last Tuesday and as I explained in a previous post, the worst scenario was that I would wake up with a permanent stoma (many can be reversed in time, but mine would have been forever) and that I would have to be fed into a vein (TPN or total parenteral nutrition) for the rest of my life.

The best scenario was that there would be enough bowel left for the stoma to be reversed and I would only require the TPN a few days a week.

The scenario-that-dares-not-speak-it's-name was that I would never eat again. Somehow my bowel would be so damaged that it couldn't manage anything orally at all.

Surgeon Pimpernell was on call last week, so we knew that was his best chance of fitting me in. Otherwise I would have to wait on what's called the "elective list" for an unthinkable 6 to 8 weeks. I had just 140 cms of small bowel left (most people have 4 metres) and less than 100 cms is "Not viable" Regular readers will know that I always resisted knowing what "not viable: actually meant. Mr Pimpernell said he would have to take 70 cms away, leaving me with just 70 myself.

First Mr Pimpernell tried to fit me in on the Monday. I got to the ward door before the anesthetist decided he couldn't trust when I said I'd last eaten and he wouldn't risk the anesthetic.

I was incredibly frustrated. Us bowel disease patients know very well that we're very likely to be "bumped". Bowel cancer is often such a vicious cancer and in many cases, by the time patients get a diagnosis, it's too late. But being bumped for no reason, being bumped because yet another health care professional decided "he knew best" was almost more than I could bear.

Just as I was coming to terms with my misery, porters arrived again. This time it was about 8pm and I got all the way down to the anaesthetic room before they told me there'd been an emergency. Some poor soul had died in recovery, so was already intubated and unconscious and needed one last shot to save his life. Frustrating though it was, no-one minds being bumped for this.

I was woken up the following morning at 8am by yet more lovely porters. This time, all went well and the next thing I knew, someone was calling my name and telling me it was all over.

If anyone remembers the horrors of post-op pain relief I had at the Other Place, might like to know that my pain pump wasn't quite ready for me to use when I woke up. The loveliest nurse assured me "I'll be your pain pump Sue, you don't have to worry about a thing" He never left my bedside, giving me 10mg boluses until the pump was ready.

After a while, Dave came in looking relieved and happy. He told me to take a look at my tummy. As I peeled back the sheet, eager to meet my new stoma-buddy, I saw there wasn't one there at all! I panicked, asking Dave what had gone wrong. Had they not cleared the blockages after all? Would I have to go back to the pain and vomiting of before? I honestly didn't think I'd be able to bear it if I did.

But no, clever Mr Pimpernell had managed to salvage an extra 20 cms, so in all, I had 90cms left after all. Whilst not quite the metre I need, he thought it was worth giving me a chance to see how I went before I had to face such drastic after care.

So no stoma at all wasn't even an option on my consent form, I felt like an actual miracle had happened. What's more, they wanted me to see how I went with eating before they set up permanent TPN, so I dodged that bullet too.

My recovery has been superb - possibly the best of all the operations I've had. The most remarkable thing seems to be that all the pain and vomiting of before has gone. It's hard to believe, but I already felt better 2 or 3 days after the op, despite all the surgical pain.

So it's early days and I've got a long way to go yet, but things look so much more promising than I dared to hope. I'm convinced that the hundreds of goodwill messages and prayers carried me through, so a million thank yous to all of you.