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?
Subscribe to:
Posts (Atom)