I am working on a very high profile, very daring campaign. I'm not 100% sure that I will be able to go ahead with it yet, but the planning has been positive and I think it could be the most important thing all of us could do, if we all get behind it and give it everything we've got.
It will cause enormous waves and would open me personally up to scrutiny on a level I've never experienced before. It makes Spartacus Report look like a nice friendly chat.
It's a very specific campaign and I can't share the details with you yet until I've taken legal advice and done some more groundwork. It will require fundraising on a level we haven't attempted yet. This will need trustees etc and a whole new level of organisational accountability.
The Spartacus Network is non-partisan. It has always fought scrupulously to engage with any party who is willing to listen to us. I am not, and I make no secret of the fact that I am a passionate Labour member.
This is a political campaign and will require an enormous degree of message control and strategy. There must very very clear aims that all sign up to. It will need very broad support from all progressives and anti-austerity campaigners. It will not be Spartacus led.
However I look at it, it just can't work unless we work with all parties equally. I can pretty much guarantee that this won't include the Conservatives, they are the major partner in the government inflicting the policies we oppose, but it's vital we win the support of all the other parties. It can only work if it appeals to all. It will need supporters, both physically and virtually, and it will need donors. If we limit that, it will limit the success of the campaign.
The brutal reality of "non-partisan" is that it does exactly what it says on the tin. Tribal politics should be totally irrelevant to a non-partisan campaign and it means we have to be open to working with anyone who is prepared to genuinely engage.
This campaign will need to engage with Labour, Lib Dem, Green and UKIP supporters. It must give each of them equal opportunity to benefit from the campaign. It fundamentally will NOT endorse any Party - quite the opposite, but it will be of benefit to all of these parties, if they choose to engage. How much of a benefit will be up to them. As official parties, they will NOT be able to donate financially, but we might need to share networks, contacts and information. Donations will have a maximum limit to exclude any undue influence from any powerful group.
So the question is, if in one very specific campaign, it is in all of our interests to help UKIP - as we help all other parties - do we stick to the true principle of "non-partisan" and all that entails?
This will NOT help UKIP nationally, or any other party, though the ramifications might. It will NOT endorse them in any way (or any other party) and it will NOT imply that on any issue other than the very narrow and specific issues of the campaign, we endorse policies of ANY party.
In all of my planning, the only concern has been over this. We are a broadly Progressive movement and there is deep anxiety over working with UKIP in any way. If this is to succeed, we will either need a mandate to include UKIP on this, or clear indications that there is no support for working with them in any way and a decision that this must remain a "Progressive" campaign, compromising a claim to be "non-partisan" and undoubtedly excluding a chunk of support we will need.
I should make it clear, that any political campaign will inevitably benefit some parties more than others. That's just mathematics. This campaign is entirely unconcerned with that and the outcome is not the point. I know it's hard to understand that when I can't say more, but the campaign will succeed or fail on meticulous planning and I need space and some more time to do that. I have to ask you to bear with me.
I should also point out that UKIP will play a key role in this whether we include them or not. It will be harder without them.
This is an open comment thread, please, I'm urging all progressives and campaigners of any group or none to share their opinion. Spartacii, I need you to help me make this a consultation and help me get it out to people who need to comment.
Finally, I will not be bullied by any one voice. I don't care how loud anyone might shout this is a decision we all need to make and this thread and this thread alone will decide what we do. If the majority want to stay truly non-partisan, then that is what I will do, putting all personal interests aside. If the majority believe we must never work with UKIP under any circumstances, then I will take that path. I will also not allow any one group to take over the thread or influence it in any way. It's vital all feel they can leave their opinion in an open and confident way, knowing that their opinion will NOT be derided or attacked. Bullies will be moderated immediately. Also remember, there are people who will believe passionately you don't work with Labour/Greens/Libs under any circumstances either. Our personal opinions might be strong, but it's important to remember they're ours and that not everyone shares them.
You are all entitled to leave any comment you wish and to be as robust as you wish, but leave your colleagues and allies alone!
Please help me with this, it might be very, very important.
Thursday, 26 June 2014
Tuesday, 24 June 2014
Come on Dave, we're waiting!
It's not often something Nick Robinson tweets deserves a whole post all of it's own, but I think this tweet might:
@BBCNickRobinson Standby for Cameron apology: "If I have been lied to, that would be the moment for profound apology" July 2011
Over to you then Dave....
BENEFIT PROBLEMS? URGENT ADVICE
Many of you will, I'm sure, have read about the appalling case of Michael Hilton, who was evicted from his home due to the Bedroom Tax :
http://michellekent1.wordpress.com/2014/06/18/bedroomtax-and-michael-hilton/
Whist his individual case is heartbreaking, it seems to be well in hand now with lots of people trying to help him. However, reading through the comments to find out if he was OK, the following from a Brian Powell. I don't know him, so I hope he'll forgive me for sharing his comment here. PLEASE pass this on to anyone you fear might be "burying their head in the sand"
"Although this is a disturbing news article, you ask at the end, ‘where were the welfare advice groups and his local ward councillors’. Well they were there but, unfortunately none of them are mind readers. If they had of been asked by Michael himself, or a family member, or even a friend to look at the situation, I am sure things would have been sorted out easily.
http://michellekent1.wordpress.com/2014/06/18/bedroomtax-and-michael-hilton/
Whist his individual case is heartbreaking, it seems to be well in hand now with lots of people trying to help him. However, reading through the comments to find out if he was OK, the following from a Brian Powell. I don't know him, so I hope he'll forgive me for sharing his comment here. PLEASE pass this on to anyone you fear might be "burying their head in the sand"
"Although this is a disturbing news article, you ask at the end, ‘where were the welfare advice groups and his local ward councillors’. Well they were there but, unfortunately none of them are mind readers. If they had of been asked by Michael himself, or a family member, or even a friend to look at the situation, I am sure things would have been sorted out easily.
I worked as a welfare rights advisor for about 15 years and, in that time, I had literally thousands of cases that could have been straightened out in two minutes but, because people left things until the last possible moment before saying something, those cases took as long as six months to get sorted, with all of the added stress that people went through needlessly.
It would help enormously if someone would run a national campaign to get people to seek help immediately they were notified of a problem with anything to do with their welfare or housing benefits."
It would help enormously if someone would run a national campaign to get people to seek help immediately they were notified of a problem with anything to do with their welfare or housing benefits."
Saturday, 21 June 2014
Open letter to the BBC
Dear BBC,
In a list of my favorite public bodies, I value you second only to the NHS. For me, you have always been a shining beacon of truth and balance in an increasingly owned and cynical world.
But you see, I've followed your fortunes long before the coalition took power.
I remember the James Murdoch speech of 2009, where he threatened your very existence as an irritating stumbling block standing in the way of his family's domination of our collective global opinions. And I remember that he was a regular dinner party guest of David Cameron, Rebecca Brooks and others at the time.
http://image.guardian.co.uk/sys-files/Media/documents/2009/08/28/JamesMurdochMacTaggartLecture.pdf
And I remember that one of the first things the coalition did was to inflict huge cuts on your budget and that David Cameron described those cuts as "delicious".
http://www.theguardian.com/media/2010/oct/20/bbc-cuts-spending-review
http://www.newstatesman.com/blogs/the-staggers/2010/10/bbc-cuts-cameron-brussels
I remember how they threatened you for providing balanced reporting of their austerity programme, even threatening to stop your funding arrangements if you didn't change your coverage.
http://www.mirror.co.uk/news/uk-news/bbc-grant-shapps-tory-mp-2647207
Since then, I've had my own experiences of the BBC, so I can add anecdote to evidence.
I campaign on government welfare reforms - ESA, DLA, PIP, Universal Credit, the Work Programme, Bedroom Tax. I'm your main cmpaigner contact for those stories, ao I also know that almost every time you've reported these issues at all, Iain Duncan-Smith has fired off furious letters and complaints to you.
http://www.theguardian.com/politics/2012/aug/19/iain-duncan-smith-bias-bbc
I know that he dictates to you how his issues are to be reported or refuses to engage with you at all. I know that he refuses to attend debates of any genuine substance and even refuses to send any of his minions in his place.
I know that countless stories have had to be dropped because of this refusal to engage and that researchers say they have never seen anything like it.
I know that I provide accurate, fact based research to several of your top people, but also know that they ask me not to reveal my involvement or they will be "in trouble".
But most of the country don't know any of this. They see you as I used to see you, as a free voice in a complicated world. They trust you as I trusted you. They believe that you tell them facts, not news. They know that the Mail or the Mirror or Sky might have an axe to grind, might try to mislead or sway them, but they assume that what you tell them is as close to the truth beneath all of that spin as you can reasonably get.
I remember with pride how I watched your coverage on 9/11. I was waiting to see how Tony Blair would handle a roasting from the TUC, but that speech never happened. Within moments, I watched along with the rest of the world, forgetting to breathe. as hijacked airplanes exploded into the gleaming towers of the World Trade Centre, and so watched you coverage from the very 1st minute. Occasionally, I switched to CNN or other US channels for a different perspective and was horrified by their trailer-voice drama and inflammatory soundbites. I watched them fudge the whereabouts of President Bush when you had shown footage of his arrival at the White House hours before.
I learnt in those hours that when horrifying tragedy hits, I want you there with me. I want to be British, I appreciate that you will risk your lives to bring me truth more than almost anything else. I want to know that whatever pressures and temporary challenges you are faced with, you will always be the BBC of my childhood. Never biased, never intimidated and never owned.
Like the NHS, you are owned by all of us, and something deep in your DNA has never forgotten that. Something deep in our society has always appreciated it, always agreed to go on paying for it, somehow knowing it was our best shot at free speech.
However Iain Duncan-Smith might stamp his feet today, his welfare reforms ARE in chaos, they ARE a fiasco and they ARE in meltdown. I have been trying to expose these failures for 4 years now and I need you to tell them too. Because this DWP have overseen the greatest social crisis in a generation and as far as I know, the BBC have never hidden that kind of news from the people who pay its licence fee.
In a list of my favorite public bodies, I value you second only to the NHS. For me, you have always been a shining beacon of truth and balance in an increasingly owned and cynical world.
But you see, I've followed your fortunes long before the coalition took power.
I remember the James Murdoch speech of 2009, where he threatened your very existence as an irritating stumbling block standing in the way of his family's domination of our collective global opinions. And I remember that he was a regular dinner party guest of David Cameron, Rebecca Brooks and others at the time.
http://image.guardian.co.uk/sys-files/Media/documents/2009/08/28/JamesMurdochMacTaggartLecture.pdf
And I remember that one of the first things the coalition did was to inflict huge cuts on your budget and that David Cameron described those cuts as "delicious".
http://www.theguardian.com/media/2010/oct/20/bbc-cuts-spending-review
http://www.newstatesman.com/blogs/the-staggers/2010/10/bbc-cuts-cameron-brussels
I remember how they threatened you for providing balanced reporting of their austerity programme, even threatening to stop your funding arrangements if you didn't change your coverage.
http://www.mirror.co.uk/news/uk-news/bbc-grant-shapps-tory-mp-2647207
Since then, I've had my own experiences of the BBC, so I can add anecdote to evidence.
I campaign on government welfare reforms - ESA, DLA, PIP, Universal Credit, the Work Programme, Bedroom Tax. I'm your main cmpaigner contact for those stories, ao I also know that almost every time you've reported these issues at all, Iain Duncan-Smith has fired off furious letters and complaints to you.
http://www.theguardian.com/politics/2012/aug/19/iain-duncan-smith-bias-bbc
I know that he dictates to you how his issues are to be reported or refuses to engage with you at all. I know that he refuses to attend debates of any genuine substance and even refuses to send any of his minions in his place.
I know that countless stories have had to be dropped because of this refusal to engage and that researchers say they have never seen anything like it.
I know that I provide accurate, fact based research to several of your top people, but also know that they ask me not to reveal my involvement or they will be "in trouble".
But most of the country don't know any of this. They see you as I used to see you, as a free voice in a complicated world. They trust you as I trusted you. They believe that you tell them facts, not news. They know that the Mail or the Mirror or Sky might have an axe to grind, might try to mislead or sway them, but they assume that what you tell them is as close to the truth beneath all of that spin as you can reasonably get.
I remember with pride how I watched your coverage on 9/11. I was waiting to see how Tony Blair would handle a roasting from the TUC, but that speech never happened. Within moments, I watched along with the rest of the world, forgetting to breathe. as hijacked airplanes exploded into the gleaming towers of the World Trade Centre, and so watched you coverage from the very 1st minute. Occasionally, I switched to CNN or other US channels for a different perspective and was horrified by their trailer-voice drama and inflammatory soundbites. I watched them fudge the whereabouts of President Bush when you had shown footage of his arrival at the White House hours before.
I learnt in those hours that when horrifying tragedy hits, I want you there with me. I want to be British, I appreciate that you will risk your lives to bring me truth more than almost anything else. I want to know that whatever pressures and temporary challenges you are faced with, you will always be the BBC of my childhood. Never biased, never intimidated and never owned.
Like the NHS, you are owned by all of us, and something deep in your DNA has never forgotten that. Something deep in our society has always appreciated it, always agreed to go on paying for it, somehow knowing it was our best shot at free speech.
However Iain Duncan-Smith might stamp his feet today, his welfare reforms ARE in chaos, they ARE a fiasco and they ARE in meltdown. I have been trying to expose these failures for 4 years now and I need you to tell them too. Because this DWP have overseen the greatest social crisis in a generation and as far as I know, the BBC have never hidden that kind of news from the people who pay its licence fee.
Thursday, 19 June 2014
Government keep around £1 BILLION PER YEAR meant for disabled people
There has finally been national news coverage on the appalling failures of IDS welfare reforms.
We are now informed that a staggering 700,000 sick or disabled people are stuck in sickness benefit limbo waiting a year or more with no ESA decision.
With around 265,000 stuck with no PIP decision, leaving many without disability support they will qualify for and are entitled to.
Now, I could lay out very detailed figures for what those people are likely to be receiving while they wait, (if anything) what they will be likely to be awarded based on past performance and will do at the end of this post.
But the most conservative estimate, assuming all 965,000 people get the lowest awards possible is £15 Million per week. The highest is £26 Million per week.
That's between £780 Million and £1.35 BILLION per year.
So let's assume an even £1 Billion?
A BILLION POUNDS PER YEAR!!!
Money that people with cancer and Parkinsons and bowel disease and heart failure and cerebral palsy and muscular dystrophy and any other condition you can barely imagine are entitled to. Money they desperately need to live in dignity. Money the public want them to have - no-one wants genuine people to suffer.
And every last penny is the result of the multiple failures of Iain Duncan-Smith, Lord Freud and their hopelessly out of touch teams.
Yet I'm sure you're barely aware of it. Whilst 30,000 people risk missing out on a nice holiday through passport delays blanket the front covers of our newspapers, a MILLION people denied support they need to live is barely even mentioned.
Remember, these are only estimates for claims that will end up with a POSITIVE decision. Forget the "scroungers and the skivers" politicians are so determined to convince you are the only ones affected.
These are the ordinary people living extremely challenging lives caught up in the monstrous failures of IDS welfare reforms.
Note :
At March 2014 712,000 ESA and 266,000 PIP claimants were awaiting assessments and decisions.
We can assume that more than half of the ESA claimants will get an award of ESA based on past figures. Even on the lowest WRAG award, that is 8.75m a week
Early PIP stats suggest that 45% of all PIP claimants get an award first time. This is only likely to increase with appeals as with DLA
So depending on final award PIP claimants are losing between £6.85 Million and £17.5 Million per week. (And they are getting NOTHING all the while they are stuck in assessment though positive awards will be backdated)
Some PIP claims will already receive an award as are transfers of existing claims and this bass been factored in.
*As the equally brilliant @Mr_ceebs pointed out, that is about £50 million in interest payments the DWP should not have received. Enough to keep 1,000 of those stuck in ESA limbo full ESA for a whole year.
**Huge thanks for the facts and figures behind this article to @Ephemerid213 and for the kind permission to reproduce them here. **
We are now informed that a staggering 700,000 sick or disabled people are stuck in sickness benefit limbo waiting a year or more with no ESA decision.
With around 265,000 stuck with no PIP decision, leaving many without disability support they will qualify for and are entitled to.
Now, I could lay out very detailed figures for what those people are likely to be receiving while they wait, (if anything) what they will be likely to be awarded based on past performance and will do at the end of this post.
But the most conservative estimate, assuming all 965,000 people get the lowest awards possible is £15 Million per week. The highest is £26 Million per week.
That's between £780 Million and £1.35 BILLION per year.
So let's assume an even £1 Billion?
A BILLION POUNDS PER YEAR!!!
Money that people with cancer and Parkinsons and bowel disease and heart failure and cerebral palsy and muscular dystrophy and any other condition you can barely imagine are entitled to. Money they desperately need to live in dignity. Money the public want them to have - no-one wants genuine people to suffer.
And every last penny is the result of the multiple failures of Iain Duncan-Smith, Lord Freud and their hopelessly out of touch teams.
Yet I'm sure you're barely aware of it. Whilst 30,000 people risk missing out on a nice holiday through passport delays blanket the front covers of our newspapers, a MILLION people denied support they need to live is barely even mentioned.
Remember, these are only estimates for claims that will end up with a POSITIVE decision. Forget the "scroungers and the skivers" politicians are so determined to convince you are the only ones affected.
These are the ordinary people living extremely challenging lives caught up in the monstrous failures of IDS welfare reforms.
Note :
At March 2014 712,000 ESA and 266,000 PIP claimants were awaiting assessments and decisions.
We can assume that more than half of the ESA claimants will get an award of ESA based on past figures. Even on the lowest WRAG award, that is 8.75m a week
Early PIP stats suggest that 45% of all PIP claimants get an award first time. This is only likely to increase with appeals as with DLA
So depending on final award PIP claimants are losing between £6.85 Million and £17.5 Million per week. (And they are getting NOTHING all the while they are stuck in assessment though positive awards will be backdated)
Some PIP claims will already receive an award as are transfers of existing claims and this bass been factored in.
*As the equally brilliant @Mr_ceebs pointed out, that is about £50 million in interest payments the DWP should not have received. Enough to keep 1,000 of those stuck in ESA limbo full ESA for a whole year.
**Huge thanks for the facts and figures behind this article to @Ephemerid213 and for the kind permission to reproduce them here. **
Sunday, 15 June 2014
The Scientific Deity
My earlier post today about patient doctor relationship has sparked a wide ranging and welcome debate from patients and health professionals across social media.
It led us to discussing whether the emphasis is too much on scientific care and not enough on the patient experience of the condition. Do we trust science too much, put too much emphasis on what science and medicine can achieve.
Years ago, as a teenager trying to navigate and make sense of a medical approach that often hurt or damaged me, that I often found fallible, yet omnipotent and unquestionable. Science as the new God.
I wrote a poem about it but have never published it - many of us would cringe at the thought of sharing anguished teenage thoughts.
But reading it today, I wonder if I hadn't learnt more than I knew already.
The Scientific Deity
Our Father, who art in Heaven, who recalls thy name?
What authority must sinners bow to now?
***
We used to have an absolute; a safe, sorbent net,
That saved our souls from all the wrath of Bishops and their Hell.
Repent! Confess! For all shall be absolved
when God, the Almighty, meets us at the gates.
Go Murder! Steal! Abuse and Lie!
Then, in the silence of the sacred shrine spill all
for He will see and He will judge and every act is stored away.
Hide your Lust beneath the Guilt of incense and of prayer.
Deny, Restrict, Repress, Confine and He will guide the way.
But Hail! The new Almighty power, slowly won the day like cancer, Creeping, spreading, silent - all the world agrees :
The Scientific Deity has truly set us free.
And all is proved and tested
No shadow of a doubt.
All the pain and suffering injected quite away.
Cut out the rotten debris of misery and sickness
We're sterile now, so clean and pure.
Vacuum sealed at every edge.
Aided and abetted by the New Messiahs, bacteria with penicillin potions dealt a sweeping genocide.
Not Priests or rusty Cardinals with arbitrary zeal
But Science and her ever spreading roots will Heal us all.
And if a few are mutilated, mangled by her wheels,
Well, Democratic rules apply : "We cater to Majority"
(And most agree to compensate the victims of success
if proof be linked and Scapegoat can be found)
It led us to discussing whether the emphasis is too much on scientific care and not enough on the patient experience of the condition. Do we trust science too much, put too much emphasis on what science and medicine can achieve.
Years ago, as a teenager trying to navigate and make sense of a medical approach that often hurt or damaged me, that I often found fallible, yet omnipotent and unquestionable. Science as the new God.
I wrote a poem about it but have never published it - many of us would cringe at the thought of sharing anguished teenage thoughts.
But reading it today, I wonder if I hadn't learnt more than I knew already.
The Scientific Deity
Our Father, who art in Heaven, who recalls thy name?
What authority must sinners bow to now?
***
We used to have an absolute; a safe, sorbent net,
That saved our souls from all the wrath of Bishops and their Hell.
Repent! Confess! For all shall be absolved
when God, the Almighty, meets us at the gates.
Go Murder! Steal! Abuse and Lie!
Then, in the silence of the sacred shrine spill all
for He will see and He will judge and every act is stored away.
Hide your Lust beneath the Guilt of incense and of prayer.
Deny, Restrict, Repress, Confine and He will guide the way.
But Hail! The new Almighty power, slowly won the day like cancer, Creeping, spreading, silent - all the world agrees :
The Scientific Deity has truly set us free.
And all is proved and tested
No shadow of a doubt.
All the pain and suffering injected quite away.
Cut out the rotten debris of misery and sickness
We're sterile now, so clean and pure.
Vacuum sealed at every edge.
Aided and abetted by the New Messiahs, bacteria with penicillin potions dealt a sweeping genocide.
Not Priests or rusty Cardinals with arbitrary zeal
But Science and her ever spreading roots will Heal us all.
And if a few are mutilated, mangled by her wheels,
Well, Democratic rules apply : "We cater to Majority"
(And most agree to compensate the victims of success
if proof be linked and Scapegoat can be found)
How do you really practice patient centered care?
One of the great disconnects between doctor and patient is the difference between "learning" and "knowing".
A competent doctor can learn their specialist area well. They might conduct research or design new treatments. They might spend years on PhDs or medical papers that further our understanding of a condition. But that's all they can do. They can only learn about it.
They rarely actually experience the disease or condition as the patient does. Clearly.
It can lead to a strange and frustrating relationship. If the Dr has learnt in a textbook that something is true, then it must be true. If a certain symptom or reaction is not part of their understanding of the condition, they might dismiss it. I clearly remember a doctor telling me that humans can't feel pain in their bowels as there are no pain receptors. I looked at him in utter astonishment. How could he ever possibly believe this? He saw patients every day in agony, writhing around, pleading for relief, yet he didn't believe in that pain as he'd been told it didn't exist.
For years I explained that my Crohn's disease would be worse just before a period and was assured that it was just period pains. Again, I had no idea how to respond as I couldn't even begin to imagine how a Dr might think I wouldn't know the difference between pain in my womb and pain in my bowel. It would be like turning up to see your GP with a broken finger and being told not to worry, its just all part of your depression. The disconnect was so great, it was almost impossible to bridge.
Years later research showed that the hormones of a period did indeed seem to stir up the actual Crohn's, separate from any symptoms of the period itself. I remember my consultant telling me wryly. Now that it was written, it could be.
I couldn't be allergic to vitamin B12 injections because people just weren't. It turned out I was.
I couldn't have blood results that defied the actual picture raging inside me, people just didn't. I did.
If I didn't blow up to the size of a football, I couldn't be obstructing. But I could. Regularly.
And on and on. I would claim something to be so, they would say it couldn't be right up until we found that it was.
But the serious point behind this truth is that these were the times in my life when I found the NHS set against me, not with me, They were the times I felt most desperate, unheard, frightened. They put insurmountable brick walls in the way of care I often urgently needed.
Nurses too could spend decades caring for and treating similar symptoms, yet have no real concept of what that care really offered. Bandages were changed because it was the third day they had been in place, drips of liquid feed were changed because calorie levels had been reached for the day. Beds were changed because that's what you do when you first come in in the morning. That's not to say staff didn't empathise with their patients or care about their lives, just that any job is a job first, with tasks that need to be done and it's rare to stop and think about the effect that job or task has on your patients.
Most of us can understand the pleasure of a clean crisp set of sheets after 24 hour of sweating or vomiting or bleeding through the last set. I think we can imagine the bliss of a cup of tea after a long 24 hours nil by mouth. But could we understand how marvelous it feels to get outside for an hour when we've been shut away for weeks, how that can be just as important for recovery as any pill? Can we really know how it feels to experience pain every minute of every day unremittingly? What that might do to your life or the person you are in the long months when a healthcare professional never sees us? Can they know how scary it is to have someone stick needles or tubes into you and dig about a bit, not alleviated one jot by the fact that it's "for your own good"?
Of course we can't. We might think that we can, that we try to understand, but we can't. If a human has been broken by the incredible challenges of living with a long term serious illness, it's easy to judge. To believe we would have been stronger, coped better. It's easy to separate patients into deserving and underserving based on their responses to what we sometimes forget can be extreme suffering. It's easy to judge their lives as we judge our own, forgetting the million tiny challenges the patient faces every day that we don't ever need to even consider. We might treat the pain, or clean the wound or prescribe the treatments, but we may never know how hard it is just to make a cup of tea or hold your own children when they cry.
If someone has dedicated years of their life to alleviate the suffering of a specific group, it seems a little churlish to suggest we might make the process more arduous. However, it seems to me that we should evolve our medical system to give as much weight to really trying to understand how it feels to experience the condition you hope to treat.
Staff on a bowel ward might have to try the liquid feeds they administer. Trying them is very different to living on them, and no-one would be any the worse for volunteering to do 48 hours with nothing but litres of synthetic goop. Sitting still for hours on end would drive most doctors I know into complete fury. I think I would like to see doctors spending 24 hours in a bed with no ability to do a single thing for themselves. Unless you experience the true length of a day, until you know what it is to be confined, totally dependent, to a bed, you may never even notice what it can do to a patient.
Did most doctors or nurses have to sit down with a patient during their training and ask them about how it feels to live with their conditions? Not the symptoms but the actual reality of tolerating or navigating the challenges it brings? What it does to their life day to day, how it has shaped their lives and why they might have modified their behavior to survive the onslaught.
Because 30 years of treatment have given me the wry knowledge that science is only science until it isn't any more. Endless battles trying to explain that a particular approach doesn't work are often vindicated years later. Care changes, procedures are updated and the only constant is that whatever the opinion du jour might demand, a human is lying in the bed.
That patient sometimes needs you to just sit and hear them. It isn't a waste of your time, far from it, it will give you vital clues about what might work best for the person behind the hospital number.
How does being ill hurt them? In which ways is it putting pressure on their families? What do they want you to do for them? Their goals may not be what you imagine at all. What are their priorities, how can their lives be improved so that the condition has less impact? None of that might involve a pill or operation, it might be that they need some social care support or a car modified to their needs or a better pain consultant. If you can truly imagine what a lifeline that car is to them or how the constant pain drains them or how they miss their children when they have to spend long periods in hospital, it might change your approach completely.
An illness is only a fraction about it's treatment and 99% about living the best life you can through it. Yet we devote 99% of our resources to providing the best medical outcome we can, devoting just a fraction of our time to understanding why we're doing it, why it matters to the individual lives we aim to improve.
I think a shift in this balance might go a very long way to providing the patient centered care we say we want without necessarily spending further mountains of cash on expensive drugs and equipment alone. Patients might in fact need and desire entirely different solutions to those we assume. If we start to ask the questions, we might just be amazed by the answers. If we aim to experience as many of the challenges our patients do as we reasonably can, we must certainly be better at our jobs for it?
A competent doctor can learn their specialist area well. They might conduct research or design new treatments. They might spend years on PhDs or medical papers that further our understanding of a condition. But that's all they can do. They can only learn about it.
They rarely actually experience the disease or condition as the patient does. Clearly.
It can lead to a strange and frustrating relationship. If the Dr has learnt in a textbook that something is true, then it must be true. If a certain symptom or reaction is not part of their understanding of the condition, they might dismiss it. I clearly remember a doctor telling me that humans can't feel pain in their bowels as there are no pain receptors. I looked at him in utter astonishment. How could he ever possibly believe this? He saw patients every day in agony, writhing around, pleading for relief, yet he didn't believe in that pain as he'd been told it didn't exist.
For years I explained that my Crohn's disease would be worse just before a period and was assured that it was just period pains. Again, I had no idea how to respond as I couldn't even begin to imagine how a Dr might think I wouldn't know the difference between pain in my womb and pain in my bowel. It would be like turning up to see your GP with a broken finger and being told not to worry, its just all part of your depression. The disconnect was so great, it was almost impossible to bridge.
Years later research showed that the hormones of a period did indeed seem to stir up the actual Crohn's, separate from any symptoms of the period itself. I remember my consultant telling me wryly. Now that it was written, it could be.
I couldn't be allergic to vitamin B12 injections because people just weren't. It turned out I was.
I couldn't have blood results that defied the actual picture raging inside me, people just didn't. I did.
If I didn't blow up to the size of a football, I couldn't be obstructing. But I could. Regularly.
And on and on. I would claim something to be so, they would say it couldn't be right up until we found that it was.
But the serious point behind this truth is that these were the times in my life when I found the NHS set against me, not with me, They were the times I felt most desperate, unheard, frightened. They put insurmountable brick walls in the way of care I often urgently needed.
Nurses too could spend decades caring for and treating similar symptoms, yet have no real concept of what that care really offered. Bandages were changed because it was the third day they had been in place, drips of liquid feed were changed because calorie levels had been reached for the day. Beds were changed because that's what you do when you first come in in the morning. That's not to say staff didn't empathise with their patients or care about their lives, just that any job is a job first, with tasks that need to be done and it's rare to stop and think about the effect that job or task has on your patients.
Most of us can understand the pleasure of a clean crisp set of sheets after 24 hour of sweating or vomiting or bleeding through the last set. I think we can imagine the bliss of a cup of tea after a long 24 hours nil by mouth. But could we understand how marvelous it feels to get outside for an hour when we've been shut away for weeks, how that can be just as important for recovery as any pill? Can we really know how it feels to experience pain every minute of every day unremittingly? What that might do to your life or the person you are in the long months when a healthcare professional never sees us? Can they know how scary it is to have someone stick needles or tubes into you and dig about a bit, not alleviated one jot by the fact that it's "for your own good"?
Of course we can't. We might think that we can, that we try to understand, but we can't. If a human has been broken by the incredible challenges of living with a long term serious illness, it's easy to judge. To believe we would have been stronger, coped better. It's easy to separate patients into deserving and underserving based on their responses to what we sometimes forget can be extreme suffering. It's easy to judge their lives as we judge our own, forgetting the million tiny challenges the patient faces every day that we don't ever need to even consider. We might treat the pain, or clean the wound or prescribe the treatments, but we may never know how hard it is just to make a cup of tea or hold your own children when they cry.
If someone has dedicated years of their life to alleviate the suffering of a specific group, it seems a little churlish to suggest we might make the process more arduous. However, it seems to me that we should evolve our medical system to give as much weight to really trying to understand how it feels to experience the condition you hope to treat.
Staff on a bowel ward might have to try the liquid feeds they administer. Trying them is very different to living on them, and no-one would be any the worse for volunteering to do 48 hours with nothing but litres of synthetic goop. Sitting still for hours on end would drive most doctors I know into complete fury. I think I would like to see doctors spending 24 hours in a bed with no ability to do a single thing for themselves. Unless you experience the true length of a day, until you know what it is to be confined, totally dependent, to a bed, you may never even notice what it can do to a patient.
Did most doctors or nurses have to sit down with a patient during their training and ask them about how it feels to live with their conditions? Not the symptoms but the actual reality of tolerating or navigating the challenges it brings? What it does to their life day to day, how it has shaped their lives and why they might have modified their behavior to survive the onslaught.
Because 30 years of treatment have given me the wry knowledge that science is only science until it isn't any more. Endless battles trying to explain that a particular approach doesn't work are often vindicated years later. Care changes, procedures are updated and the only constant is that whatever the opinion du jour might demand, a human is lying in the bed.
That patient sometimes needs you to just sit and hear them. It isn't a waste of your time, far from it, it will give you vital clues about what might work best for the person behind the hospital number.
How does being ill hurt them? In which ways is it putting pressure on their families? What do they want you to do for them? Their goals may not be what you imagine at all. What are their priorities, how can their lives be improved so that the condition has less impact? None of that might involve a pill or operation, it might be that they need some social care support or a car modified to their needs or a better pain consultant. If you can truly imagine what a lifeline that car is to them or how the constant pain drains them or how they miss their children when they have to spend long periods in hospital, it might change your approach completely.
An illness is only a fraction about it's treatment and 99% about living the best life you can through it. Yet we devote 99% of our resources to providing the best medical outcome we can, devoting just a fraction of our time to understanding why we're doing it, why it matters to the individual lives we aim to improve.
I think a shift in this balance might go a very long way to providing the patient centered care we say we want without necessarily spending further mountains of cash on expensive drugs and equipment alone. Patients might in fact need and desire entirely different solutions to those we assume. If we start to ask the questions, we might just be amazed by the answers. If we aim to experience as many of the challenges our patients do as we reasonably can, we must certainly be better at our jobs for it?
Saturday, 14 June 2014
IDS the untouchable
The fascination of IDS rages on social media like no other.
Iain Duncan-Smith. Failed ex-Tory leader. The "Quiet Man".
Dubious CV and mediocre in every way, somehow this man has risen to the very highest positions of power we can bestow. Despite a few wobbles along the way, he has had a lengthy career at the highest levels of right-wing politics, influencing the way all of us live our lives in some way.
If ever the marmite definition applied to anyone, it applies to Mr Smith.
You either believe he is the only real Tory left in government. You admire him and believe that he is Christian, compassionate, and following a genuinely righteous course. You might wish he was leader instead of the odious Cameron and respect his conservative, ideological "British Values."
You don't have to be a Conservative to feel that way. His welfare reforms have been trailed as one of the only successful strands of this government's programme. "At least they're getting tough on scroungers."
This is the commonly held view, and a popular one. There are over 900 other articles on this blog that will explain in detail why this is fundamentally untrue. But the question I hear people ask more and more is "How?"
Because millions of other people in the UK believe that he is the most dangerous, incompetent, ignorant man of modern times. They believe this with a horror, a kind of silent-scream that somehow can't be heard.
They know that he has failed in every way at every last attempt he has made to "reform" our welfare system. He has spent £18 billion MORE than he saved, costing the taxpayer in endless failed projects and abandoned lives.
So how has this man managed to maintain the myth? Why do most of the country think he's doing a good job, when everyone involved in his reforms - from DWP staff themselves to recipients, social workers, charities and government advisors know that we are witnessing the greatest departmental chaos in living memory?
It's no coincidence, believe me. Mr Duncan-Smith has found himself in a position so fortunate, he can literally do anything he chooses with complete impunity. He is a politician who simply cannot be challenged. Combined with a natural belief that he is fulfilling a great and necessary social vision and an irritable tendency to dismiss all opposition, that storm threatens all of us more than we even begin to imagine.
Firstly, he is the staunch right-hand flank of the scattered and frayed remains of the grassroots Conservative party. They detest Cameron, as do most of the right wing press. Without IDS, to them, Cameron is just a metropolitan liberal and they're already leaving the party in droves or flirting dangerously with UKIP because of it.
So the first rule is that IDS cannot be reshuffled. No matter what. There are considerable rumors that Cameron's cabal are just as unhappy about this as we are. Osborne allegedly tried to move him in the first reshuffle, but he argued that he would not do any other job than welfare reform. He threatened to go so they kept him on. Since then, Cameron's position has only got weaker and therefore, IDS' more indispensable.
Secondly, the Conservatives plan to fight the next election on their welfare record. They've made it very clear that they believe Labour are weak on "welfare" and all of the polling shows that it is one of their strongest policy areas with the public. If it was revealed for what it is, their vote would collapse.
So no matter that Universal Credit, IDS great idea for benefit reform has utterly failed in every way and almost certainly will not happen at all. No matter that hundreds of millions had to be written off on failed IT or that only 6,000 people have been transferred against a projected million or so, absolutely no Conservative voices - political or media - are allowed to acknowledge his failures in any way. Ditto his sickness benefit reforms that have now ground to an almost complete standstill or that his disability reform will take 42 years to rollout at the current pace. These are the truths that dare not speak their name.
Thirdly, everyone expected huge opposition to his social security reforms. They braced themselves for hell and I imagine, think they got off quite lightly on the whole. The people complaining are the people affected or those with vested interests in supporting them - who expected that they wouldn't? It's for the greater good. Of course there will be unfortunate "collateral damage" - some wrong decisions, bedding in problems, but most in the country believe that it is necessary and that most people affected can actually man-up and get on with their lives. If we just throw them in the deep end, we believe that most of them could actually swim all along.
So no matter how good or varied the evidence, no matter how influential the charity or think tank, no matter how desperate the individual stories, IDS can simply dismiss them all. No matter if the courts find against him, that's just namby-pamby health and safety stuff. No matter how devastating the report or explosive the whistle blower, IDS can sneer patronisingly that they are just trying to stay on their easy-ticket. Why wouldn't they?
So no matter how genuine the claim or how desperate the need, you can easily be put in that pile of "people over there"
And finally, he has a few tricks up his sleeve to make sure that the whole construct doesn't get blown apart.
He refuses point blank to engage. He will not take part in any public appearance with anyone that opposes him. Nor will any of his department. Opposition ministers, campaigners, charities, he simply refuses to do it or to send even the lowliest SpAd from the DWP. This is much cleverer than it might seem. If they don't debate, there is usually no debate. Interviews are cancelled, stories get bumped and the public never ever have to hear him put on the spot. Ever. Or any of his ministers or anyone involved in the contracts (who are bound by gagging clauses).
You simply never get to hear him defend himself as other politicians do. Interviewers are either 100% signed up to his aims anyway or so woefully short on detail and understanding of the monstrously complicated welfare system that he can easily duck away.
He has politicised the DWP Press office in a way forbidden by parliamentary procedure. They share his misleading statistics, or push his failures as successes, hold back evidence and spin stories in his favour. They have been repeatedly pulled up on this by the NSA and other agencies.
He regularly writes threatening letters to the BBC or other outlets complaining if they put any opposition balance to his policies at all. His department instruct how they must refer to policies and on what terms they will appear.
He uses prominent right wing media - predominantly the Express, Mail and Telegraph to parade misleading articles and claims. They are often so similar, that it's clear they were written by IDS' department and they repeat the same inaccurate claims. If he wishes to announce literally anything he cares to, those 3 outlets will all make sure that it is front page that day, they won't question the information and most of it will be written by whoever wrote the DWP spin. The BBC will usually then carry the stories too, leading unsuspecting members of the public to have no reason whatsoever to question them as anything other than fact.
So it's not amazing, or surprising at all. His job is utterly secure as long as Cameron is leader, he cannot be questioned in any way in case it jeopardises the election strategy and the public are shielded from the full impact of his failures. Sure, there is a story here or there, but the main message is "Great guy, doing a difficult job"
Is it any wonder the debate is so farcically biased? Is it any wonder campaigners and opponents have failed to make even the tiniest dent in his armour? What he actually does is irrelevant. Whether he reforms social security or not is irrelevant. He simply has to stay put.
Fooling the public is the easy bit, they have loads of people who can take care of that.
Iain Duncan-Smith. Failed ex-Tory leader. The "Quiet Man".
Dubious CV and mediocre in every way, somehow this man has risen to the very highest positions of power we can bestow. Despite a few wobbles along the way, he has had a lengthy career at the highest levels of right-wing politics, influencing the way all of us live our lives in some way.
If ever the marmite definition applied to anyone, it applies to Mr Smith.
You either believe he is the only real Tory left in government. You admire him and believe that he is Christian, compassionate, and following a genuinely righteous course. You might wish he was leader instead of the odious Cameron and respect his conservative, ideological "British Values."
You don't have to be a Conservative to feel that way. His welfare reforms have been trailed as one of the only successful strands of this government's programme. "At least they're getting tough on scroungers."
This is the commonly held view, and a popular one. There are over 900 other articles on this blog that will explain in detail why this is fundamentally untrue. But the question I hear people ask more and more is "How?"
Because millions of other people in the UK believe that he is the most dangerous, incompetent, ignorant man of modern times. They believe this with a horror, a kind of silent-scream that somehow can't be heard.
They know that he has failed in every way at every last attempt he has made to "reform" our welfare system. He has spent £18 billion MORE than he saved, costing the taxpayer in endless failed projects and abandoned lives.
So how has this man managed to maintain the myth? Why do most of the country think he's doing a good job, when everyone involved in his reforms - from DWP staff themselves to recipients, social workers, charities and government advisors know that we are witnessing the greatest departmental chaos in living memory?
It's no coincidence, believe me. Mr Duncan-Smith has found himself in a position so fortunate, he can literally do anything he chooses with complete impunity. He is a politician who simply cannot be challenged. Combined with a natural belief that he is fulfilling a great and necessary social vision and an irritable tendency to dismiss all opposition, that storm threatens all of us more than we even begin to imagine.
Firstly, he is the staunch right-hand flank of the scattered and frayed remains of the grassroots Conservative party. They detest Cameron, as do most of the right wing press. Without IDS, to them, Cameron is just a metropolitan liberal and they're already leaving the party in droves or flirting dangerously with UKIP because of it.
So the first rule is that IDS cannot be reshuffled. No matter what. There are considerable rumors that Cameron's cabal are just as unhappy about this as we are. Osborne allegedly tried to move him in the first reshuffle, but he argued that he would not do any other job than welfare reform. He threatened to go so they kept him on. Since then, Cameron's position has only got weaker and therefore, IDS' more indispensable.
Secondly, the Conservatives plan to fight the next election on their welfare record. They've made it very clear that they believe Labour are weak on "welfare" and all of the polling shows that it is one of their strongest policy areas with the public. If it was revealed for what it is, their vote would collapse.
So no matter that Universal Credit, IDS great idea for benefit reform has utterly failed in every way and almost certainly will not happen at all. No matter that hundreds of millions had to be written off on failed IT or that only 6,000 people have been transferred against a projected million or so, absolutely no Conservative voices - political or media - are allowed to acknowledge his failures in any way. Ditto his sickness benefit reforms that have now ground to an almost complete standstill or that his disability reform will take 42 years to rollout at the current pace. These are the truths that dare not speak their name.
Thirdly, everyone expected huge opposition to his social security reforms. They braced themselves for hell and I imagine, think they got off quite lightly on the whole. The people complaining are the people affected or those with vested interests in supporting them - who expected that they wouldn't? It's for the greater good. Of course there will be unfortunate "collateral damage" - some wrong decisions, bedding in problems, but most in the country believe that it is necessary and that most people affected can actually man-up and get on with their lives. If we just throw them in the deep end, we believe that most of them could actually swim all along.
So no matter how good or varied the evidence, no matter how influential the charity or think tank, no matter how desperate the individual stories, IDS can simply dismiss them all. No matter if the courts find against him, that's just namby-pamby health and safety stuff. No matter how devastating the report or explosive the whistle blower, IDS can sneer patronisingly that they are just trying to stay on their easy-ticket. Why wouldn't they?
So no matter how genuine the claim or how desperate the need, you can easily be put in that pile of "people over there"
And finally, he has a few tricks up his sleeve to make sure that the whole construct doesn't get blown apart.
He refuses point blank to engage. He will not take part in any public appearance with anyone that opposes him. Nor will any of his department. Opposition ministers, campaigners, charities, he simply refuses to do it or to send even the lowliest SpAd from the DWP. This is much cleverer than it might seem. If they don't debate, there is usually no debate. Interviews are cancelled, stories get bumped and the public never ever have to hear him put on the spot. Ever. Or any of his ministers or anyone involved in the contracts (who are bound by gagging clauses).
You simply never get to hear him defend himself as other politicians do. Interviewers are either 100% signed up to his aims anyway or so woefully short on detail and understanding of the monstrously complicated welfare system that he can easily duck away.
He has politicised the DWP Press office in a way forbidden by parliamentary procedure. They share his misleading statistics, or push his failures as successes, hold back evidence and spin stories in his favour. They have been repeatedly pulled up on this by the NSA and other agencies.
He regularly writes threatening letters to the BBC or other outlets complaining if they put any opposition balance to his policies at all. His department instruct how they must refer to policies and on what terms they will appear.
He uses prominent right wing media - predominantly the Express, Mail and Telegraph to parade misleading articles and claims. They are often so similar, that it's clear they were written by IDS' department and they repeat the same inaccurate claims. If he wishes to announce literally anything he cares to, those 3 outlets will all make sure that it is front page that day, they won't question the information and most of it will be written by whoever wrote the DWP spin. The BBC will usually then carry the stories too, leading unsuspecting members of the public to have no reason whatsoever to question them as anything other than fact.
So it's not amazing, or surprising at all. His job is utterly secure as long as Cameron is leader, he cannot be questioned in any way in case it jeopardises the election strategy and the public are shielded from the full impact of his failures. Sure, there is a story here or there, but the main message is "Great guy, doing a difficult job"
Is it any wonder the debate is so farcically biased? Is it any wonder campaigners and opponents have failed to make even the tiniest dent in his armour? What he actually does is irrelevant. Whether he reforms social security or not is irrelevant. He simply has to stay put.
Fooling the public is the easy bit, they have loads of people who can take care of that.
Thursday, 12 June 2014
Quiet Man? Gentleman? You decide
Iain Duncan-Smith is on Question Time tonight. I don't think I can bear to watch his smug, arrogant lies. We see the true nature of the man all the time in parliament - he's rude, irritable and nasty.
Yet still they call him the quiet man, the gentleman.
Here's your gentleman : (from Hansard last November) May all the universe conspire to show the whole country this IDS we know so well.
"Rachel Reeves (Leeds West) (Lab): This weekend it was reported that Atos had pulled out of a DWP contract providing specialist disability advice. What was the Department’s response? An internal memo instructing staff deciding whether people are disabled enough to receive disability living allowance to “google it”. Is this not the biggest indication yet of the sheer contempt in which the Department for Work and Pensions holds disabled people?
Yet still they call him the quiet man, the gentleman.
Here's your gentleman : (from Hansard last November) May all the universe conspire to show the whole country this IDS we know so well.
"Rachel Reeves (Leeds West) (Lab): This weekend it was reported that Atos had pulled out of a DWP contract providing specialist disability advice. What was the Department’s response? An internal memo instructing staff deciding whether people are disabled enough to receive disability living allowance to “google it”. Is this not the biggest indication yet of the sheer contempt in which the Department for Work and Pensions holds disabled people?
Mr Duncan Smith: The hon. Lady is completely wrong. First of all, it was not an internal memo; it was guidance that goes out to the Department in the normal way. [Interruption.] The hon. Member for Rhondda (Chris Bryant) needs to keep quiet for a while and listen a bit more. This man has travelled so far in his political career that we never know what he is talking about. He has gone from being a Tory to being a Blairite and then a Brownite, and now he is a socialist on his website, so I wonder whether he needs to keep quiet and listen a little more.
The answer to the hon. Member for Leeds West (Rachel Reeves) is that Atos Healthcare has not withdrawn from the contract. Normal procedures to update guidance in the process of DLA reform are going through. Under DLA, only 6% had face-to-face assessments; the majority have face-to-face assessments now, under the personal independence payment. Therefore, decision makers have much more objective information than they ever had before, so there is no change to the quality of the service. This is a simple contract adjustment to reflect and meet the corresponding business needs. The hon. Lady should really not listen to jobbing journalists who come to her to tell her they have an issue.
Rachel Reeves: I am not sure whether the Secretary of State has even bothered to read the memo from his own Department. As the right hon. Gentleman knows, because of the failure of his Department to deliver the reform, the personal independence payment is going out only to a third of country. After the chaos of the universal credit, the work capability assessment, the PIP, the Work programme and the Youth Contract, DLA is now in chaos as well. Is there any part of the Department for Work and Pensions that is actually working?
Mr Duncan Smith: The thing that is wonderful about the hon. Lady is that she never listens; she just reads what is on her script that she prepared before, and it does not matter what question was answered. I have already told her—[Interruption.]The hon. Member for Rhondda should keep quiet; otherwise he will jump out of his underpants if he carries on like that—
Mr Speaker: Order. These occasions are becoming deeply disorderly. A question has been put, and the Secretary of State is answering it. The House must hear the answer with all due courtesy and orderliness."
He's on with Iain Hislop, editor of Private Eye which has fiercely criticized IDS and Atos from the start when no-one else would. Chris Bryant represents the Lab shadow team and he's nobody's yes man, totally up for bit of argey bargey.
If you have nerves stronger than me, it might be quite a dust up.
What do you call a government who....
If this article makes you think, please don't close it without using the buttons at the end to tweet it, share it and send it to your friends. This has been a scream inside my head for months now.
What do you call a government who's first act is to make it virtually impossible to remove them from power, no matter how badly they perform?
What do you call a government who use the media and their own departmental outlets to run a partisan propaganda campaign against vulnerable groups? Who ensure that lies are printed, policies are not criticised, information requests are not granted and statistics are misrepresented?
What do you call a government who overturn laws retrospectively to make court rulings against them obsolete?
What do you call a government who erodes justice by ensuring the least able to defend themselves can no longer access it? Or who remove the right for ordinary people or organisations to take them to court? Or who limit the right to appeal decisions?
What do you call a government who introduce a gagging bill making it virtually impossible for third parties to oppose them through democratic channels? Who threaten charities and our independent national news service for covering important stories in the national interest?
What do you call a government that ignores the advice of it's second chamber entirely, effectively neutering it from providing the checks and balances true democracies demand?
What do you call a government who ignores court rulings not once but repeatedly that find their policies discriminate but ignore that ruling? Or who whitewash consultations and entirely falsify their results - or ignore them completely?
What do you call a government who tries to scrap the human rights act and buy your employment rights from you?
What do you call a government who send misleading and partial reports to our world partners on what effects their policies are having on its citizens?
What do you call a government who restrict education for disabled people and books for those in prisons? Who design our children's education based on personal whims and construct a syllabus that matches their own world view?
Reports today show that Trussell Trust, the charity responsible for the largest network of food banks in the UK modified their campaigning after threats that the government might get them shut down if they continued to make links between government policies such as welfare reform and the rise in food banks. http://www.civilsociety.co.uk/governance/news/content/17632/trussell_trust_chair_told_the_government_might_try_to_shut_you_down#.U5llhF5H1FJ
This following a week that saw Oxfam criticised by a Conservative MP for highlighting growing poverty not abroad, but here in the UK.
I have proof from FOI requests that Chris Grayling, that the then Work and Pensions Secretary asked civil servants repeatedly about closing down my own blog. https://www.whatdotheyknow.com/request/correspondence_regarding_tribuna#incoming-316228
If you read this today, RT it, share it and ask everyone you send it to to ask themselves exactly what the actual definition is of a government who behaves like this? And I only scratched the surface.
What do you call a government who's first act is to make it virtually impossible to remove them from power, no matter how badly they perform?
What do you call a government who use the media and their own departmental outlets to run a partisan propaganda campaign against vulnerable groups? Who ensure that lies are printed, policies are not criticised, information requests are not granted and statistics are misrepresented?
What do you call a government who overturn laws retrospectively to make court rulings against them obsolete?
What do you call a government who erodes justice by ensuring the least able to defend themselves can no longer access it? Or who remove the right for ordinary people or organisations to take them to court? Or who limit the right to appeal decisions?
What do you call a government who introduce a gagging bill making it virtually impossible for third parties to oppose them through democratic channels? Who threaten charities and our independent national news service for covering important stories in the national interest?
What do you call a government that ignores the advice of it's second chamber entirely, effectively neutering it from providing the checks and balances true democracies demand?
What do you call a government who ignores court rulings not once but repeatedly that find their policies discriminate but ignore that ruling? Or who whitewash consultations and entirely falsify their results - or ignore them completely?
What do you call a government who tries to scrap the human rights act and buy your employment rights from you?
What do you call a government who send misleading and partial reports to our world partners on what effects their policies are having on its citizens?
What do you call a government who restrict education for disabled people and books for those in prisons? Who design our children's education based on personal whims and construct a syllabus that matches their own world view?
Reports today show that Trussell Trust, the charity responsible for the largest network of food banks in the UK modified their campaigning after threats that the government might get them shut down if they continued to make links between government policies such as welfare reform and the rise in food banks. http://www.civilsociety.co.uk/governance/news/content/17632/trussell_trust_chair_told_the_government_might_try_to_shut_you_down#.U5llhF5H1FJ
This following a week that saw Oxfam criticised by a Conservative MP for highlighting growing poverty not abroad, but here in the UK.
I have proof from FOI requests that Chris Grayling, that the then Work and Pensions Secretary asked civil servants repeatedly about closing down my own blog. https://www.whatdotheyknow.com/request/correspondence_regarding_tribuna#incoming-316228
If you read this today, RT it, share it and ask everyone you send it to to ask themselves exactly what the actual definition is of a government who behaves like this? And I only scratched the surface.
Tuesday, 10 June 2014
At last, Atos turn whistle-blower!!!!
We knew this day would come. We've known for a while that it was coming, but finally it's happened, as it always had to.
The gloves have come off between Atos and the DWP!
To be honest, I couldn't believe it had gone this long. For months we've known that the contract with Atos had failed, long before we heard officially in March that they would be walking away from the detested "work capability assessments" or WCAs. I'd been hearing of wranglings and arguments, deadlocks and very unhappy bunnies in general. On both sides.
To keep that quiet for so long has been quite an achievement in itself.
But today, Atos start the long journey of rehabilitating their decimated public reputation, by finally telling their side of the story on - wait for it - BBC news no less! Now that the contract is broken, for the first time, they get to defend themselves and point out the failures that were never anything to do with them but all set in stone at the DWP. Let's hope that at the same time they acknowledge their own very considerable failings too.
However, today is the day when absolutely every voice in the Employment and Support Allowance debate are against the DWP. And doesn't that make everything so much tidier ;)
Although please note the almost ludicrously dismissive "Campaigners argue the tests are fundamentally flawed" with no mention whatsoever of why or what these failures in the whole sorry process are. The BBC record on covering this issue with any kind of balance, has been unforgivable and becomes more so by the day.
On a serious note, whilst the article does say that claimants and campaigners made doing the job impossible, (YAY FOR US!) but it goes a long way to explaining why claimants were justified in their fierce opposition. This is a slight shift in the Atos line it seems to me, away from blaming claimants to blaming the system design itself and the DWP
CELEBRATE, DO CARTWHEELS, RT AND SHARE!!!!
http://m.bbc.co.uk/news/uk-politics-27767779 …
The gloves have come off between Atos and the DWP!
To be honest, I couldn't believe it had gone this long. For months we've known that the contract with Atos had failed, long before we heard officially in March that they would be walking away from the detested "work capability assessments" or WCAs. I'd been hearing of wranglings and arguments, deadlocks and very unhappy bunnies in general. On both sides.
To keep that quiet for so long has been quite an achievement in itself.
But today, Atos start the long journey of rehabilitating their decimated public reputation, by finally telling their side of the story on - wait for it - BBC news no less! Now that the contract is broken, for the first time, they get to defend themselves and point out the failures that were never anything to do with them but all set in stone at the DWP. Let's hope that at the same time they acknowledge their own very considerable failings too.
However, today is the day when absolutely every voice in the Employment and Support Allowance debate are against the DWP. And doesn't that make everything so much tidier ;)
Although please note the almost ludicrously dismissive "Campaigners argue the tests are fundamentally flawed" with no mention whatsoever of why or what these failures in the whole sorry process are. The BBC record on covering this issue with any kind of balance, has been unforgivable and becomes more so by the day.
On a serious note, whilst the article does say that claimants and campaigners made doing the job impossible, (YAY FOR US!) but it goes a long way to explaining why claimants were justified in their fierce opposition. This is a slight shift in the Atos line it seems to me, away from blaming claimants to blaming the system design itself and the DWP
CELEBRATE, DO CARTWHEELS, RT AND SHARE!!!!
http://m.bbc.co.uk/news/uk-politics-27767779 …
Tuesday, 3 June 2014
Suey's Electrolyte Slammers
Quite accidentally, I discovered a few weeks ago that is not, in fact, just the Tequillas in Tequilla slammers that make you high, it's actually the slammy bit!
It now seems so blindingly obvious, I'm kicking myself, but to be fair, if tequila slammers have ever mamboed into my life I haven't really been thinking about science or electrolytes.
So how did I come to this blinding realisation? Hard though it is to believe, it was actually recommended by a doctor and everything.
Totally paradoxically, I've learnt recently that I actually have to limit the amount of fluids I take in and that drinking too many fluids will actually dehydrate me. I know. Only I could have a body that capricious. I mean, you'd never have taken even the wildest guess that dehydration might be worth a go would you? You feel rough you drink plenty, everyone knows that.
But, yet again, The Duchess du Crohn flicks her fan of whimsy at me.
So just like athletes (oh the irony) I need to replace lost salts and sugars in my blood all the time. And for once in it's verbose life, in NHS speak"salts" really does mean, salt and "sugars" means sugars. It's so cheap it's practically free, so you just make it at home, you don't have to buy expensive sachets or drinks.
Now here's the science bit. Actually it's in no way sciencey, I'm not sure I'm quite on top of that brief yet, but it's sciencey to me :
Add a bit of citrus and the whole concoction *bubbles and fizzes into life-force.
So if you will, from now on imagine me standing in the kitchen literally with salt on the back of my hand, the juice of a grapefruit in a glass and a jar of honey at the ready. I actually do lick the salt off the back of my hand. Then, I slam down the grapefruit juice - let me just say if you've never done this, do it just once, it's intense! - then I shove a spoon of **honey in my mouth.
I just had this feeling many of you lovely readers would get a certain amount of pleasure from imagining me in my kitchen, lining up my electrolyte-shots and squealing with a sort of pleasure-pain combo only salt and grapefruit can give. I literally shudder and whoop in exactly the same stages as you do when Tequilla is involved.
And they make you feel AWESOME! I have absolutely no idea if this should be done at home by averagely well humans or not - I suspect not, nothing fun ever should - but for a few minutes I feel like a bored 1970s suburban housewife on speed.
The fact that it's ***doctor approved is just a bonus really.
*It doesn't actually bubble and fizz, I was being artistic
** I don't really use honey, I use Golden Syrup because it's yummy, but I thought honey made me look better
*** The actual treatment for short bowel syndrome is called St Mark's Formula. It is not the same as the regime I explain above. You find out more here. http://www.gloshospitals.nhs.uk/SharePoint5/Patient%20Information%20Leaflets/GHPI0247.pdf the
**** I just had the peach because they're yummy.
It now seems so blindingly obvious, I'm kicking myself, but to be fair, if tequila slammers have ever mamboed into my life I haven't really been thinking about science or electrolytes.
So how did I come to this blinding realisation? Hard though it is to believe, it was actually recommended by a doctor and everything.
Totally paradoxically, I've learnt recently that I actually have to limit the amount of fluids I take in and that drinking too many fluids will actually dehydrate me. I know. Only I could have a body that capricious. I mean, you'd never have taken even the wildest guess that dehydration might be worth a go would you? You feel rough you drink plenty, everyone knows that.
But, yet again, The Duchess du Crohn flicks her fan of whimsy at me.
So just like athletes (oh the irony) I need to replace lost salts and sugars in my blood all the time. And for once in it's verbose life, in NHS speak"salts" really does mean, salt and "sugars" means sugars. It's so cheap it's practically free, so you just make it at home, you don't have to buy expensive sachets or drinks.
Now here's the science bit. Actually it's in no way sciencey, I'm not sure I'm quite on top of that brief yet, but it's sciencey to me :
Add a bit of citrus and the whole concoction *bubbles and fizzes into life-force.
So if you will, from now on imagine me standing in the kitchen literally with salt on the back of my hand, the juice of a grapefruit in a glass and a jar of honey at the ready. I actually do lick the salt off the back of my hand. Then, I slam down the grapefruit juice - let me just say if you've never done this, do it just once, it's intense! - then I shove a spoon of **honey in my mouth.
I just had this feeling many of you lovely readers would get a certain amount of pleasure from imagining me in my kitchen, lining up my electrolyte-shots and squealing with a sort of pleasure-pain combo only salt and grapefruit can give. I literally shudder and whoop in exactly the same stages as you do when Tequilla is involved.
And they make you feel AWESOME! I have absolutely no idea if this should be done at home by averagely well humans or not - I suspect not, nothing fun ever should - but for a few minutes I feel like a bored 1970s suburban housewife on speed.
The fact that it's ***doctor approved is just a bonus really.
*It doesn't actually bubble and fizz, I was being artistic
** I don't really use honey, I use Golden Syrup because it's yummy, but I thought honey made me look better
*** The actual treatment for short bowel syndrome is called St Mark's Formula. It is not the same as the regime I explain above. You find out more here. http://www.gloshospitals.nhs.uk/SharePoint5/Patient%20Information%20Leaflets/GHPI0247.pdf the
**** I just had the peach because they're yummy.
Sunday, 1 June 2014
Happy Little Sick Girl
This piece by Tom Shakespeare is so good, I have to write a whole blog post in response
http://www.bbc.co.uk/news/magazine-27554754?ocid=socialflow_twitter
How can it be that on the whole, sick and disabled people are happier than people living without impairments? Doesn't that seem counter-intuitive? "Poor" disabled people are surely those we pity, however kindly? How can you possibly live in constant and terrible pain, or perhaps restricted by physical bonds that seem insurmountable and enjoy a better quality of life than those who don't?
I've thought long and hard about this for many, many years. As Tom points out, it is indeed a paradox. Whilst anecdote is not evidence, my own experience of life confirms the theory. Roller-coaster-like, my life-lows have been very, very low, but where else does that leave you to go?
The most powerful illustration I have is of those first precious few hours after leaving hospital after a long stay. Life in hospital gets greyer by the day, emptier, less stimulated. Days are marked only by the grindingly repetitive appearance of the tea trolley, food is bland, light is neon and flickering. Sound is muffled and amplified all at once, like the echoes of chlorine-heavy municipal swimming pools. Loneliness bites sharper than any scalpel, fear hovers as surely as the ubiquitous drip stand. And it goes on. And on. And on. And on. Until sunlight occasionally streaming through blinds hurts your eyes, phone calls seem an intrusion and life seems something other people do.
Staying in hospital for weeks or even months on end has nearly always stretched me to the limit of my tolerances, punished me, isolated me, distorted my sense of reality and self.
And here is the paradox. It's only when you're the most tested you find out exactly what you can do. Only true loneliness can teach you the value of love and friendship. Only indifference can show you how important it is to care. Only pain can show you vitality and freedom.
Until we've been really hungry, we can't know the full abundant wonder of food, until we've faced fear full in the face, we can never truly be brave. Until our senses are dampened, we take for granted the heights they soar to every day, un-noticed through the piles of gas bills and rent demands.
That moment when they say you can go home is more magical, more wonderful, than any moment most people will experience even once in a lifetime.
Those plate glass doors slide back for the last time and the very first thing you notice is the breeze on your skin. How had you never noticed it before??? Birdsong explodes like bombshells in a vast-sky-stillness you'd forgotten. The light is bright, almost miraculous, like shards of gold falling through stained glass windows.
You get into the car and feel the warm leather on your skin. As the door clunks satisfyingly shut, the sense of freedom is so overwhelming that you realise with dazzling clarity that this moment - every moment - is the first moment of the rest of your life. You could just drive and drive and drive, chasing the horizon. Any horizon, you imagine the million world-horizons you could choose and know in that moment that any one of them is open to you.
The joy on the faces of your children when you finally walk through the door threatens to dissolve you. Pudgy arms rush to cling on and never let go, heads crushed to you in relief. The words "Mum!" and "Babyyyyyy!" sound like a symphony.
Beautiful things you've spent a lifetime collecting dazzle your eyes with memories. Home. Vividly you realise that home is the only place in the world that you ever really want to be. No-one to tell you when to sleep or eat, no-one keeping you chained to one place, music that reminds you of warm summer festivals, a glass of ice cold wine shimmering with crystal-beaded bubbles.
I always stand at the door, blinking in shock, fixed with joy so overwhelming I gulp to breathe. Were colors always this vivid? Did music always sound this magical?
This headlong rush from utter despair to infinite opportunity defines happiness for me so powerfully, it's never really left me since. On a grey day, I notice the thunderous power of the clouds. At a fairground, the tinny happiness of the carousel infects me. I look beyond my small life every day towards those infinite horizons.
But this discharge-fever is an extreme example. If you become paralysed in an accident and have to learn to walk all over again, that first step you take will equal any Olympic gold. If you live with the fear of cancer for endless grueling months, the day they give you the all clear is the most powerful happiness drug known to man. But just making a cup of tea after a week unable to get out of bed or making a phone call when depression has left you spiraling in lonely misery since breakfast is an achievement.
And achievements make us happy, however small. Overcoming challenges is satisfying, finding courage is empowering.
My disability has meant that I've lived my life in glorious technicolour. Never dull, never predictable, never half a life. However painful or successful, however terrifying or miraculous, happiness is always defined by the constant challenges it inevitably follows.
Above the door to my old hospital was a plaque that read 'Whatever it is, it will pass." Over the years, I hated that sign. As I found myself endlessly repeating the horrors of an in-patient stay, I would wonder exactly when it would pass.
But as I came to trust that such powerful joy in simple things would always mirror the depths of my hard times, I realised that whatever it is, it does always pass. Maybe not forever, but for a few fleeting hours, happiness will be so tangible that I will taste it again.
http://www.bbc.co.uk/news/magazine-27554754?ocid=socialflow_twitter
How can it be that on the whole, sick and disabled people are happier than people living without impairments? Doesn't that seem counter-intuitive? "Poor" disabled people are surely those we pity, however kindly? How can you possibly live in constant and terrible pain, or perhaps restricted by physical bonds that seem insurmountable and enjoy a better quality of life than those who don't?
I've thought long and hard about this for many, many years. As Tom points out, it is indeed a paradox. Whilst anecdote is not evidence, my own experience of life confirms the theory. Roller-coaster-like, my life-lows have been very, very low, but where else does that leave you to go?
The most powerful illustration I have is of those first precious few hours after leaving hospital after a long stay. Life in hospital gets greyer by the day, emptier, less stimulated. Days are marked only by the grindingly repetitive appearance of the tea trolley, food is bland, light is neon and flickering. Sound is muffled and amplified all at once, like the echoes of chlorine-heavy municipal swimming pools. Loneliness bites sharper than any scalpel, fear hovers as surely as the ubiquitous drip stand. And it goes on. And on. And on. And on. Until sunlight occasionally streaming through blinds hurts your eyes, phone calls seem an intrusion and life seems something other people do.
Staying in hospital for weeks or even months on end has nearly always stretched me to the limit of my tolerances, punished me, isolated me, distorted my sense of reality and self.
And here is the paradox. It's only when you're the most tested you find out exactly what you can do. Only true loneliness can teach you the value of love and friendship. Only indifference can show you how important it is to care. Only pain can show you vitality and freedom.
Until we've been really hungry, we can't know the full abundant wonder of food, until we've faced fear full in the face, we can never truly be brave. Until our senses are dampened, we take for granted the heights they soar to every day, un-noticed through the piles of gas bills and rent demands.
That moment when they say you can go home is more magical, more wonderful, than any moment most people will experience even once in a lifetime.
Those plate glass doors slide back for the last time and the very first thing you notice is the breeze on your skin. How had you never noticed it before??? Birdsong explodes like bombshells in a vast-sky-stillness you'd forgotten. The light is bright, almost miraculous, like shards of gold falling through stained glass windows.
You get into the car and feel the warm leather on your skin. As the door clunks satisfyingly shut, the sense of freedom is so overwhelming that you realise with dazzling clarity that this moment - every moment - is the first moment of the rest of your life. You could just drive and drive and drive, chasing the horizon. Any horizon, you imagine the million world-horizons you could choose and know in that moment that any one of them is open to you.
The joy on the faces of your children when you finally walk through the door threatens to dissolve you. Pudgy arms rush to cling on and never let go, heads crushed to you in relief. The words "Mum!" and "Babyyyyyy!" sound like a symphony.
Beautiful things you've spent a lifetime collecting dazzle your eyes with memories. Home. Vividly you realise that home is the only place in the world that you ever really want to be. No-one to tell you when to sleep or eat, no-one keeping you chained to one place, music that reminds you of warm summer festivals, a glass of ice cold wine shimmering with crystal-beaded bubbles.
I always stand at the door, blinking in shock, fixed with joy so overwhelming I gulp to breathe. Were colors always this vivid? Did music always sound this magical?
This headlong rush from utter despair to infinite opportunity defines happiness for me so powerfully, it's never really left me since. On a grey day, I notice the thunderous power of the clouds. At a fairground, the tinny happiness of the carousel infects me. I look beyond my small life every day towards those infinite horizons.
But this discharge-fever is an extreme example. If you become paralysed in an accident and have to learn to walk all over again, that first step you take will equal any Olympic gold. If you live with the fear of cancer for endless grueling months, the day they give you the all clear is the most powerful happiness drug known to man. But just making a cup of tea after a week unable to get out of bed or making a phone call when depression has left you spiraling in lonely misery since breakfast is an achievement.
And achievements make us happy, however small. Overcoming challenges is satisfying, finding courage is empowering.
My disability has meant that I've lived my life in glorious technicolour. Never dull, never predictable, never half a life. However painful or successful, however terrifying or miraculous, happiness is always defined by the constant challenges it inevitably follows.
Above the door to my old hospital was a plaque that read 'Whatever it is, it will pass." Over the years, I hated that sign. As I found myself endlessly repeating the horrors of an in-patient stay, I would wonder exactly when it would pass.
But as I came to trust that such powerful joy in simple things would always mirror the depths of my hard times, I realised that whatever it is, it does always pass. Maybe not forever, but for a few fleeting hours, happiness will be so tangible that I will taste it again.
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