Thursday, 30 June 2011

To Strike or Not to Strike? That is the Question.

When Labour released the winner of it's public poster campaign during the 2010 election I had a massive facepalm moment.

Of all the messages they could have chosen, making David Cameron look like the anti-hero of a popular cop-drama did not strike me as well thought through.

David Cameron as Gene Hunt on poster

Today, I'm wondering just which crystal ball the designer had at his disposal. We've had month after month of Thatcherite policy announcements and now we get the Tory Holy Grail of a Strike.

Without strikes, the Tories flounder like fresh caught ells, thrashing around with no-one to blame for their disasters. The divide and conquer of setting the "deserving poor" against the "undeserving" the "immigrants" against the natives, the strong against the weak, the rich against the poor, gain little traction without the great, evil sceptre of picket lines to scare us with.

They don't negotiate seriously, because they need to set us against each other. From the first day lost to strikes, George Osborne will start to blame his economic disasters on ordinary people. The "wrong kind of snow" will become the "wrong kind of public" and positions harden around the country. "Do you support the strikers?" "Did you see those scabs?" "Bloody Unions" etc etc until battle lines are drawn in every working-men's or country club in the country.

Well, it's really not difficult. My 6 year old asked me about the schools closing a few days ago. He asked me why. I took off my rose tinted specs and tried to explain as fairly as I could.

I explained that teachers believe they're being asked to work longer for less money but to pay more. He thought for a minute, then asked me if David Cameron was doing it too. I said no. He said that wasn't fair. I told him life wasn't fair and people were getting older and living longer and we just had to find more money for people's pensions.

He, however, was fixated on MPs and the Prime Minister. "Does everyone have to pay more, work longer and get less Mummy?" I said that no, this strike was about teachers and other people who work for us. He didn't think that was fair either. "Well, they should make everyone do it or no-one at all" was his confident reply.

"But why are they striking Mummy? How does that help?" I said that they felt the government weren't listening to them and going on strike meant that people came together to show the government how important the jobs they do are, just in case they've forgotten. I tried to explain that strikes were the very, very last resort.

He pottered off and came back a moment or two later frowning. "Are my teachers striking Mummy?"
I replied, no dear, I didn't think so. He frowned more. "Why?" "I don't know dear, people don't like to close schools, they think children are too important."

In childlike innocence he told me that "teachers are important too though aren't they Mummy?"

(Hubby was loitering in the background to make sure there wasn't a trace of partisan reply...)

"Can you make me one of those badges Mummy?"

"What badges dear?"

"The one with a J and a 30 on it that you've made for your Labour people?"


" I want to wear it to school on Thursday."

"You do? But what will you say if a teacher asks why you're wearing it? You're 6 dear, they'll just think Mummy made you wear it. If you want one you have to understand why you're wearing it!!"

(Said with the breezy assurance of one who still takes a teddy to bed.....)

"Oh, I'll just say I'm wearing it because I wish they were striking too. Well, until David Cameron gets the same pension as them, anyway, then it'd be fair wouldn't it Mummy?"

What could I say? It's so easy without the nonsense of Westminster and politics isn't it?

I still don't know if I'll let him wear his badge today. He won't remember what day it is, he's 6. But I'm tempted. Because our children shame us with their simplicity. Perhaps it wouldn't do any harm to remind teachers that even a child of 6 can see that their situation is unfair and is willing to take one tiny step to support them.

Monday, 27 June 2011

Time to Choose. Will YOU fight with me?

I started to write about the Compass conference at the weekend which, frankly, was an unmitigated disaster from start to finish. If it could go wrong, it went wrong and I was just so sick I barely knew my own name. The one silver lining was the actual seminar on welfare itself which was triumphant. The "most interesting welfare debate ever, surely?" seemed to be the consensus.

I was interrupted this morning by a doctor's appointment, where, yet again, I have been sent home to bed, my laptop is to be confiscated and I have to rest on pain of a hospital admission on Thursday if I don't improve.

I've had 7 weeks now of a crohn's flare that screwed up my immune system, which led to a virus, which turned into a chest infection. If I don't get better, pneumonia is just a blink away.

And all I really wanted to say before I am exiled to a world without even my cyber friends, is that this is why politicians do what they do. And they do it because we let them.

The last few months have taught me that welfare is the murkiest department of all. Crammed with hard-liners, right-wingers, hang-em-an-whip-em, scrounger-crushing, hawks. There has only been one narrative for about 30 years - "How do we stop paying people who are sick?" This has been based on just one assumption - that we're all the man Ed Miliband met with a gammy leg who could be doing something else. Or we're dying of cancer. There's nothing in between.

I don't exist in their ignorant model of disability - or many other people's, Compass taught me that - and should any of us get beyond our station and dare to fight them, dare to speak out and try to make people see, they can be pretty confident that the fight will kill us before anyone's really noticed. Lets not forget the thousands who are so profoundly disabled they don't even know what is being done in their name - they can't argue back can they? An easy target for welfare-psycopaths. (definition : "the inability to form human attachment[3] and an abnormal lack of empathy, masked by an ability to appear outwardly normal.")

I am disgusted by my country - that's the truth of it. Disgusted at what passes for parliamentary research, disgusted that lives can be sacrificed on "assumptions", disgusted with the Machiavellian power struggles that dull even the brightest political stars, disgusted with the arrogance of politicians who never bother to respond, disgusted with a media who choose to look the other way. 

But most of all I'm disgusted with myself. Because however hard I try, however determined I am, however much I want to do this, it's killing me. My stupid, useless body just can't keep up with my perfectly capable brain. However I try to coerce it, or pamper it or persuade it, it just won't play the game. Those politicians who are so convinced that we can all just pick up our beds and walk might want to spend a week with me for living proof of someone trying to do just that. They might want to see what it's doing to my life, to my family and friends who get more frightened for me by the day. 

But daily I become more convinced that there isn't a scrap of evidence in the world that will make these politicians think again. No statistics, no facts and figures, nothing. It doesn't matter how damning the studies, how wrong we can prove that they are, they just plough on regardless, supremely confident that hurting us is  a price worth paying. They know what they want to do and they're just going to do it regardless. It's OK, sick and disabled people have no union, they can't strike, they have no powerful friends or glamorous celebrities. They're too tired or sick or disabled to fight, so don't lose any sleep over them. 

Don't want to put disabled access into your 4 star central London, newly refurbished hotel? That's OK, we won't complain. Don't want to actually find us work we could do? That's OK, no-one will ask where you fell through the cracks. 

And I'll leave you with this. Anyone reading this who thinks I'm just being a bit dramatic might want to think about the bits I don't write about. The real stories behind all of this that would just make me sound like a screaming conspiracist. The "just between me and you" conversations about politicians or spin doctors that I can't repeat or share. Frankly, my ears are bleeding and I wish I didn't know about any of the sordid, astonishing mess. 

As Kaliya concluded in her session at the conference. "We have a choice. We can do this. We can push these reforms through and change the very nature of how we treat the most vulnerable in our society. We can follow the path of 1930s work programmes, institutions and eugenics once deemed acceptable both here and in the US, Canada, Japan and elsewhere and we can turn our backs. We can decide that the sick and disabled have little rights to basic dignity. 

Or, we can open our eyes, start to listen, and think NOW, together about the kind of society we want to live in." 

But we do have to think now. Because very soon it will be too late. And I think I can assure you that politicians of all parties are going to go for the first option. As a society, we have to start to look behind the scrounger wall they are building around us and decide if abandoning us is a price worth paying. 

**I'm told it is bad form to be too pushy, to ask for your support too often, but screw pushy. Before I go off to bed, will you just RT this please? Post it on your Facebook walls, send it to your friends, or your MP. Tell people. Tell them we need their help. Thanks. 

Sunday, 26 June 2011

There's No such word as "Can't"

Growing up, my Dad had a few choice phrases that he must have used daily :

There's no such word as can't
Life's not fair
Watch the tiger when it's licking your ear.
Never sign anything

Thank God for Dad really. I'm not sure I'd ever get out of bed feeling this rubbish, but every time I want to say "I can't" I remember there's no such word as can't. And I get up. And I go on.

When I get sick again and watch another dream flushed down the toilet by my stupid failing body, I briefly think about a moan, then I remember life isn't fair. Don't expect it to be.

When I lobby politicians or chat with strategists I never ever forget that tiger. He can only be licking my ear because he's hungry.

OK, I've adapted No4 for a cyber-world, but I never, ever, put anything in writing on twitter or my blog or facebook that I think I might regret. I never bite.

Good old Dad eh? Prepared me for the murky, self-serving, Machiavellian world of politics without even realising. Prepared me to drag my crappy body on and on through a very, very, difficult life and somehow keep a semblance of still being human.

Funny how things work out isn't it?

Friday, 24 June 2011

Carry on Compass!

I'm literally giggling so much, I can hardly type now.

Kaliya Franklin (AKA @BendyGirl) and I are supposed to be terrible sharp, focused, competent and organised today. Campaigners, (apparently) welfare warriors (accidentally), the voice of a lunchbreak. (possibly)

We are to make our debut dontchya know? Like "nice gels" in the 50s but without the demure dresses. We will give a "big talk" on welfare reform at the Compass conference tomorrow at the Left Foot Forward seminar.

We haven't actually worried much about that bit yet, focused as we are on the much more daunting task of actually getting to London. After 6 weeks of crohn's-flare-which-smashed-my-immunity-which-led-to-flu-which-turned-into-a-chest-infection I am down to my very last teaspoon of ability. As late as Wednesday, we had no idea if I'd be able to make it at all. Our "Plan B" was that my ever-amazing Dave would just drive me to London on Saturday morning, wait while I gave my bit of the seminar, and drive me straight home to bed again. He knows how much this means to me.

Like some kind of miracle, I woke up on Thursday morning thinking that maybe, just maybe, I wasn't actually going to die and that I might be able to get downstairs. London was still some way off....

This morning, I gingerly ran through my body parts checking off symptoms and finding them just about functioning, got out of bed and saw that Kali had been being sick all night! Vomiting here, gagging there, the last time we spoke she was still going strong!!

We have to pack, get to our respective stations, (Sussex and Liverpool) she must face all the navigation hell of public transport in a wheelchair, I must hope like hell I get a train seat near a toilet.

When I get to London, I have to make my fluey legs walk onto the tube and cross London to meet Kali at Euston. I wonder if they actually can? (It's a work in progress.)

Our plan is to then fall gratefully into a taxi, check into the hotel, put on our PJs and try to stay out of A&E long enough to get through the weekend. To be fair, we spend lots of weekends trying to stay out of A&E so it's not Compass's fault.

At least there'll be room service!! Imagine the heaven of a world where unwell people can just pick up the phone and say in a pathetic voice "Can we have a honey and lemon pleeease? And some Toblerone. And do you do Haribos? Egg on toast? Or maybe it doesn't work that way. Kali and I don't stay in posh hotels much, so we fear they might make us stick to a menu or something. I am going to gaffer-tape over the prices.

Have you noticed that I haven't really mentioned the seminar itself? That's because we aimed to plan it all this evening. *gulp* We know what we're going to say obviously, and vaguely how we want to say it, but despite becoming bessi-phone-mates over the last few months, we've never actually met!! We wanted to work it out together.

At this rate we'll be working out bathroom shifts!!

But whatever happens, come hell or high water, we'll be at the Compass event. We'll paint on some glam, dust off our mothballed we-used-to-work clothes and talk from the heart. If that's all we can manage, I reckon it'll be enough.

**This is Kali's take on it. We're like #spoonie twins....

Wednesday, 22 June 2011

Welfare Reform; The Human Cost

I wrote a piece for the Guardian today pointing out that whilst 7,000 cancer patients will indeed be affected by time limiting ESA, a further 700,000 people with long term or serious illnesses or disabilities will also lose their benefits.

It was posted late last night, and when I woke up, it had already had 160 comments!

One commenter in particular asked lots of questions which I tried to answer with facts, but ended up saying that he had "lost all respect for my argument when I pointed out that my husband earns £19k a year. He claims.

"I have to say that since Suey2y has revealed upthread that her household has an annual income of £ 19K AND SHE STILL WANTS BENEFITS ON TOP OF THAT, then she is the selfish one..... Frankly, she is rich, not poor"

I wrote this for him. And every man or woman like him up and down the country. I didn't write it in anger - I know lots of people feel the way he does. I certainly didn't write it for sympathy because I hate the bloody stuff. I wrote it because he makes the most important point of all : Can we afford to pay people like me?

This is my response :

"I really don't mind laying my life bare for you. It's an important point

19k is what my husband earns. He pays tax and NI on it. He pays VAT, just like you.

After tax, he takes home £1,280 per month.

We live in Sussex and our rent and council tax are £1025 per month
Our heating bills are £90 per month.
That leaves £165 per month to:

- Feed and clothe a family of four, buy cleaning products and loo roll,
- Keep a car on the road (without which I would be totally housebound).
- We consider a telephone line a necessity too in case I need an ambulance or emergency doctor.
- My hospital is 130 miles away, costing £60 in petrol every month for a round trip.
- We have to pay for my prescriptions which is another £42 per month. I have to eat special foods or I will die - not out of a whim or desire - and they are expensive.
- I have to pay 13.45 a week in childcare which is recompensed through tax credits.
- I get £135 per month in child benefit which I pay to the school for the meal some families get for free because I can't make them sandwiches in the morning. What is left goes in a fund to pay for their school uniforms and trips. They are not sick and suffer enough because Mummy is. It is their money.

Because my husband works, we get none of those things for free and no help with them. We don't want it. My husband has continued to work for 10 years when I could have claimed DLA and he could have claimed Carers Allowance and the state would have paid my rent and council tax.

The state would also have paid for my children's meals at school and free milk every day. Then there would have been the free prescriptions and help with travel costs to get to and from hospital. Crisis loans when I'm stuck in hospital for months at a time and my husband has to visit with the children. We would have got Income support too. And full child tax credits. There's probably more, but we just weren't interested.

My husband always said "If I stop working, we lose everything don't we? What does it say to the kids? We'll never get out of it." And we carried on, getting by as best we could.

We don't take holidays, we never go out we had to sell our house we loved so much to avoid spiralling debt, and still I am not complaining. We did it gladly, for ourselves and for our pride. (Oh, and I have the most fantastic husband & children in the world, so have little to complain about)

ESA meant we survived. Just. In poverty and because of the goodwill of a strong, supportive, achingly generous family and friend network.

It also meant I had some value in my own right. After studying for a degree, working hard through terrible illness for 10 years and raising two children, it acknowledged that I had some value in society of my own. Time Limiting ESA will mean that I am worth nothing. I must rely 100% on the charity of my husband.

My real heartbreak is that my condition is doing this to my family. We can't change it, there is no miracle cure (nor for those other 700,000 either remember) and I would give anything in the world to earn a wage. To use my considerable brain to get us out of this grinding, endless poverty trap, but my useless body won't let me. The 700,000 of us ARE reliant on the "goodwill of the state" and I'm fairly sure we wish with all our hearts it wasn't the case. "

**As ever please click on "Twitter" and "Facebook" buttons below to help me tell as many people as possible, thanks. 

Tuesday, 21 June 2011


Hey!! We started a wheelchair conga on twitter. Thought it was time to be a bit fun.

Hasn't it all been gloomy lately? if you use twitter, do the #wheelieconga with us using the hashtag at the end of any tweets and let's see how long our conga gets on twitter today!! Invite your friends ;)

**Update - Well THAT was a surprise success. We ended up with literally thousands and thousands joining in the wheelie conga. The Papworth Trust, WhizzKidz, Aspire and TargetMD all joined in. Big thanks to Jules Clarke on twitter for the virtual Lambrinis and hotdogs. It was such a good party, people without wheelies wanted to join in, so we adapted their office chairs!! One even dug out their roller skates. 

Dame Tanni Grey Thompson even joined us for a virtual Lambrini and this morning I got this lovely picture from Oz! 
It seems our jokey bit of fun made it all around the world! 

There was a brief moment, where we were laughing and joking on twitter, people were offering about virtual food and more people were arriving all the time. Just for a second I remembered all those naff office parties I sat though when I could work. The day we played office-chair-relay, the curled up sandwiches and warm, cheap, wine and I felt part of something again. Part of the water-cooler generation, lol. 

I hope everyone felt the same. If a silly joke in the morning can lead to 10s of thousands of "wheelies" congaing their way around the world, then surely, no-one needs to feel isolated or lonely again?

Why do we have a Minister for Disabilities?

Here's a quote about the first ever Minister for Disabled People. It sounds to me like he saw a great need for his role.

"Affected by his father's experience, Morris [Alfred Morris, Baron Morris of Manchester] campaigned on behalf of the disabled; his father had suffered a long decline in health and eventual death arising from gassing during World War I.[2] After his father's death, Morris's mother was not entitled to a war widow's pension.[3] Forty years later, Morris himself put the matter right by changing the law affecting armed forces pensions when he became Minister for the Disabled.
In 1970 he successfully introduced the Chronically Sick & Disabled Persons Act which was the first in the world to recognise and give rights to people with disabilities.[4] In 1974 he became the first Minister for the Disabled anywhere in the world.[3][5] In 1991 he introduced a Civil Rights (Disabled Persons) Bill and he has led campaigns on Gulf War Syndrome.[1]" (Wikipedia)"
Today, the position is filled by Maria Miller.

At this point in history, all of the main sickness and disability benefits are being abolished and replaced with new, more limited, schemes. Sick and disabled people have shown considerable opposition to these plans.

There has been a vote of no confidence in Maria Miller, carried at the Hardest Hit march on 11th May. This was the largest ever protest of sick and disabled people in UK history. Now, there are calls all over the internet for a vote of no confidence in Ms Miller in Parliament.

Sick and disabled people are about to lose 9.2 Billion in support from a 16 billion budget.

Maria Miller has not supported us, she has not consulted us, she has not replied to us and she does not speak for us. 

Not only that, but she misrepresents us! The very people she is elected and salaried to represent.  She uses false statistics and claims that we support her government's plans. Recently she claimed that more people claim higher rate DLA for alcoholism than blindness. Not only was she wrong, but the implications of "worthy" and "unworthy" disability from a minister who's job should be to do just the opposite is shocking.

But this article really makes clear just how unworthy of her job Maria Miller is.;twitter

The part that made me write this blog post is this :

"Disabilities Minister Maria Miller, pictured, said a consultation on the proposed changes, which attracted more that 5,000 responses, had shown support for reform of DLA.
She said: “There’s now a growing view that reform is needed, whether it’s from the Government or from the opposition or from leading disability groups."

The minister claims that this was "one of the most successful consultations of its kind". Yes it was. Because groups like the Broken of Britain asked thousands of sick and disabled people what they thought and spent months running campaigns to involve people in the consultation. Over 5000 people did indeed respond and they were overwhelmingly opposed to the proposals or elements within them. A typical consultation might have 50 or 60 responses. This brilliant summary by Rhydian Fon-James from the Broken of Britain shows clearly that the government response to the "consultations" was a complete and utter whitewash.
None of the legitimate concerns were addressed. 

This woman is not a Minister for Disabled People and does nothing to speak for us in Parliament. She appears to be no more than a Minister for Propaganda and I'd like to know why we pay her a salary at all?
Mr Cameron I can save you a little deficit. Cut the Minister for Disabled People. I can assure you that none of us will notice at all.

Actually that's not true. Our lives would improve without her constant ignorance displayed in both the press and in Parliament. 

Monday, 20 June 2011

M'Luds Won't you help me with welfare reform?

As the Welfare Reform Bill moves from Parliament to The Lords, I sing (yes sing!!) Janis Joplin-With-Flu version of "Oh Lord, won't you buy me a Mercedez Benz"
Did you ever see a singing rights campaigner with hair this bad?


M'luds won't you help me, with Welfare Reform?
The sick need protection, their facing a storm,
Worked Hard all our lifetimes,
Paid tax since we're born
M'luds won't you help me with Welfare Reform?

M'luds won't you help me, to make people see?
The wall built around us by distant MPs?
We're tryin to help them, but will they help me
M'luds won't you help me to make people see?

M'luds won't you help me to keep people safe?
To live home and free with means to escape
The four walls that bind them
May keep them in chains.
M'luds won't you help me to keep people safe?

M'luds would you see them pushed onto the streets?
No hope of redemption, No way to compete?
No more hope of working
With nothing to eat.
M'luds would you see them pushed onto the streets?

M'luds are we worthy of all you hold dear?
Free speech, human rights and a voice you can hear?
The sick and the poor Lords,
Are living in fear.
M'luds are we worthy, of all you hold dear?

Written, sung and produced by Sue Marsh,

Sunday, 19 June 2011

The NHS WAS reforming for patients. That is now under Threat.

Look, this is a Sunday read. A make-a-cuppa-Sunday-supplement-stylee... (OK, look, it's long. But please don't be put off :)  

"Saving the NHS" has to be more than just words and at the end, there's an easy way to get involved. Let's just take politics out of this and offer achievable solutions to the people who have to run our hospitals and who are being forced to do a pretty awful job at the moment.

A while ago, I wrote this :  
"For the last 15 years, my hospital has run a brilliant service for sufferers of bowel disease.

A team of two specialist nurses ran a helpline, offering over-the-phone advice to patients.

Rather than going to see you GP (who invariably knew little of your condition), waiting for a referral to see your consultant, waiting for the appointment to see your consultant and taking up valuable clinic time, you could just ring the super-brilliant nurses, talk through your query, maybe get a prescription or recommendation sent directly to your GP and save the NHS hundreds of thousands of pounds.

If you found yourself at death's door, dangerously in need of an admission, the bowel nurses, who got to know you well, would arrange things almost instantly and save vital hours or days waiting for the slow wheels of the NHS to grind into action.

If you needed strong, chemo-style drugs, they would arrange things, contact the drug company, arrange for the drugs to be delivered to your home, train you in how to inject the medicine and oversee the monitoring with your GP. Blood tests could all be arranged to make sure the drug wasn't causing damage and sent immediately to the consultant. Treatments like these would otherwise require an in-patient stay every two weeks, costing the NHS.....hundreds of thousands.

This wasn't their only job. they were also both research nurses in one of the world's leading bowel disease centres at the hospital. Working with just three or four consultants, they made huge discoveries in their field, developing diet management that is widely used all over the world. Diet management in IBD now saves the NHS millions, up and down the country. They ran the studies that helped to discovered that ulcers could be treated with simple antibiotics. They have pioneered genetic research in bowel disease that has led to the treatments now being used as a gold standard throughout the world. The department discovered some of the genes so far linked to bowel disease.

Today I rang up to hear this message:

"We're sorry to announce that due to circumstances beyond our control, we are no longer able to run this service. In the first instance, please contact your GP who will make a referral....We hope to be able to re-introduce this service in the future."

Can you even begin to imagine the chaos this will cause to my life and thousands like me?

Addenbrookes is a specialist centre for bowel disease. We are very much the "most vulnerable" of bowel disease sufferers. We are referred from all over the country - I very rarely meet anyone on a ward who is local.  (I travel 280 mile round trips myself to be treated there.) We have the most severe cases, the worst complications, need the most intricate and pioneering surgery and basically, we take bowel disease to a whole new level.

Addenbrookes also deals with the patients who have lost so much bowel, they will never eat or drink again. They are fed with Total Parenteral Nutrition, a liquid feed that is fed through a central IV line directly to the heart. (I've had it many times). The IV must be set up under sterile conditions and it takes 6 weeks of in-patient training to be ready to do the task yourself at home. Can you even begin to imagine the support these patients need from nurses like those on the end of that phone line? You are at constant risk from infection from bacteria with a direct entry to your heart. You need someone at the end of a phone!

And this is the best example of why efficiency savings need to actually be efficient! Just look at how much this is going to cost. Think of all those extra admissions!! For thousands of things those 2 nurses dealt with on a daily basis!! The extra referrals and appointments, the extra stress and uncertainty that patients will suffer, worsening their conditions.

No more brilliant discoveries or time-consuming research that might lead to them either.

So How am I today?

Bloody mystified."

Well today, after some careful investigations (NHS staff are rightly, fiercely loyal to their colleagues and trusts) I can explain what's going on. I think it's vital to remember that this will be going on up and down the country as the NHS tries to find "efficiency savings" never attempted before. Vital cancer services and emergency surgeries must be maintained. Wards must be run - at least on a skeleton staff - babies must be delivered and deaths must be dignified. Everything else must be up for discussion. We, as patients and the public need to be aware of this. 

Helplines do not immediately spring to mind as vital services. A Trust forced into finding cuts of up to 37% has to make heartbreaking decisions. We need to be aware of that too. The public seem to oppose the reforms of the NHS but this has obscured much of the  debate over the eye-watering level of the cuts services will inevitably have to face. If we accept these "efficiency savings," then maternity units and hospitals and clinics will close. Wards will be understaffed and patient care will suffer - it already is. 

The pressure on the NHS will be inconceivable - as Consultants and GPs are warning on a daily basis. The NHS faces a crisis and the government want to break up its entire structure in he middle of this crisis. That's one of the main reasons NHS staff oppose these changes so strongly. 

But in the carnage of panic-cuts imposed so quickly it's impossible to make rational decisions. what should the NHS do? Well many are trying to focus on reducing the need for clinic time, reducing admissions, and reducing costly or avoidable surgeries 

Chronic illness is one of the biggest costs to the NHS. We take expensive drugs, often for life. We need multiple admissions and surgeries. We must have regular diagnostic procedures and exploratory surgery. We use much of the physio or community services. We require the specialist mental health teams and hospitals. 

By making our care more streamlined, more integrated and easier to access (just as the nurses at Addenbrookes do) it saves the NHS millions every day. Need an ambulance at 3am? Call the bowel team as well - the special number will get you directly through to the on call registrar who'll get you seen quicker by the exact specialist you need. Need TPN? The bowel nurses will arrange it, saving the NHS a six week admission - minimum. This method of care trusts and empowers the patient to make the right decisions for their care too. 

Need to see the consultant every month? No, the bowel nurses can usually help you, meaning the consultant can take on thousands of patients rather than hundreds. Need to see the consultant quick, bumping someone else off the list? No, the bowel nurse holds a clinic and seeing her is just as good - often better - than seeing the consultant. 

Far from starving this vital service, the PCT responsible for Cambridge should extend it. The helpline has been struggling on with a 1000% increase in users over 15 years but has never been properly included as separate spending, just a part of the overall gastroenterology budget. Today, just 1.5 Consultant Nurses can be paid for and the service has finally and spectacularly crashed. They simply can't run it alone any more in any meaningful way. 

So here's my urgent proposal to NHS trusts up and down the country : If you don't do so already, set up services like this in your specialist departments and double their funding to give them twice the staff. Do it now, as soon as you possibly can. 

Empower and trust your patients, just as they do at Addenbrookes, to be in charge of their care in as full a way as they feel able. When a patient with a chronic condition has a good support team they trust, the rate of contact often drops. Just knowing they're there is often enough. Patients get better at managing their conditions and better access to specialist care. We often know more about our conditions than many medical professionals anyway, so this simple act of empowerment and support raises the standard of chronic care enormously. 

These are Consultant Nurses and it's time we recognised this vital layer of NHS care as amongst the most specialist and cost effective there is. 

If you do this, you will not only improve chronic care overnight, reducing the enormous burden it places on the NHS, but you will reduce the need for clinic time enormously, reduce acute admissions, reduce long term "crisis management" stays, reduce admissions for TNF-Alpha treatments and reduce the need for the repeated surgeries that are so costly both to he NHS and the lives of patients. 


If you think patients can have a say in the future of our NHS too, then perhaps you will send this article to NHS Cambridgeshire and maybe the Chief Exec  asking that they think about running the service properly, with 4 fully trained Consultant Nurses. 

I ask just that they follow the project closely and send someone to monitor the savings these nurses make all day, every day. For a month, just cost out all the admissions they avoided and the care plans they modified and improved, and the clinic appointments they saved. 

Then roll it out to every specialist department across the country. 

You might also want to send this to your PCT or Hospital Trust and that's fine too. 

This could ease a tremendous burden on the NHS at just the right time. It's relatively cheap and largely self run and managed. 

A final plea to those who have to decide where the money is spent : Do something sensible for long-term patients. Up and down the country, it will find you billions of those "efficiency savings" you need to find and improve long term care for fluctuating conditions. 

Last but not least, if you think this could help the NHS, do use the Twitter and Facebook buttons below to share this article, Thanks.

Saturday, 18 June 2011

Weekly Roundup

Every now and then I write a weekly roundup when the week gets a bit frantic.

This must have been the most frantic week since I started writing! When I wrote my notebook on Wednesday it looked like I'd started writing a screenplay for some political drama - either that or I'd tipped over into total self delusion and some form of personality disorder.

The big news of course, is that the Welfare Reform Bill passed it's third reading in parliament by 288 to 238 votes. It was always going to pass, but I think it's worth stopping to think about how successfully we raised our issues and made sure that they were fully scrutinised. Removing the mobility component from care homes & time limiting ESA were "technicalities" buried deep in the bill, but we found them early and made them vital issues. Abolishing DLA in favour of the new PIPs was discussed in terms of the objections that sick and disabled people raised, not politicians. ATOS and the form of assessments the carry out is now mainstream news and I have much more faith that in the end, government will be forced into changing them properly to make them fairer.

It's hard to see these things as achievements when the bill passed, but they are. During the third reading, Margaret Curran pointed out to parliament that "sick and disabled people and their campaign groups are watching us today" whilst later Dame Anne Begg MP praised the campaign groups who "have come together in solidarity as never before to oppose this bill, often leading the way over important issues."

Now, as the bill goes to the Lords and our main issues are clearly defined, well debated and achieving large degrees of public sympathy, we start from a very strong position.

The sadness for me, was that I didn't oppose all of the Welfare Reform Bill. I largely support a Universal Credit. If our very reasonable amendments had been taken seriously and allowed a free vote, we might be in a very different place today. Myself and the other members of Broken of Britain would be sleeping for at least a month, content with a job well done and the coalition could move forward without us buzzing in their ears all day every day.

Of course on Monday, we were dismayed by Ed Miliband's speech on "responsibility". Whilst the blogosphere debated endlessly whether or not Ed should be making speeches about "cheats" and "scroungers" at all, sick and disabled people were devastated to see that the very example of irresponsibility Ed used was a man in Incapacity Benefit. It's hard to see how this can be anything but a clear warning that Ed is not ready to admit what a mess ESA is. I find it hard to see at this stage how Labour could ever gain the trust of sick and disabled people in the future. They are furious and totally disillusioned.

Liam Byrne spoke at the Progress event on welfare reform, which as your intrepid welfare-warrior, I felt it my duty to attend. Some tiny chink of something made me think he might actually be hearing us, his tone shifting to acknowledge that the issues sick and disabled people face are very different to the issues able bodied jobseekers face. Nonetheless there is a very long way to go and we still lack support across the political spectrum.

It did however lead to this quite extraordinary article from Liberal Conspiracy offering Mr Byrne a "deal" to "save his career" over welfare reform. That the entire blogosphere is now urging politicians to work with us at the highest level can only be a good thing, though the tone of the article has had me chuckling all week. A "screenplay moment" if ever I saw one!!

Then, in the most jaw-dropping moment of my entire blogging adventure, Ed Miliband stood up at PMQs and devoted all 6 questions to Time Limiting ESA!! My technical, hard to explain issue, that I've hammered away at for months became the top news story of the day! Mr Miliband pointed out that 7,000 cancer patients would lose their contributory ESA after just one year, whether they had recovered or even finished chemo treatment. Now, we must work tirelessly to make sure that people know this measure actually affects 700,000 people in total as well as those 7,000 cancer patients. Nearly three-quarters of a million seriously ill or disabled people who've paid tax and NI all their lives will lose everything after one year. 

This issue gave Mr Miliband a scorching win. A win he desperately needed. He was passionate, confident and determined at the despatch box. He stood up for some of the most vulnerable people of all and the public were delighted. I hope very much that he will now look into some of the other issues we work so hard to highlight and see that they are equally important to the public - not just to our movement. I hope Mr Miliband concludes that standing up for your beliefs is always popular when people can see you genuinely care.

So, off to the Lords! I have no idea what that entails yet, but if it's half as exciting, frustrating and complex as parliament, I think I'd better have a wee lie down.

Well Done Everyone!!!!!!! You've all achieved amazing things together and we can achieve much, much more.

Friday, 17 June 2011

Tory MP suggests Sick & Disabled work for less than Min Wage

And so it begins.

No-one ever seriously doubted that Conservatives would challenge the Minimum Wage the minute they got into power.

Despite it being the most popular and effective policy introduced by Labour during their term in office, despite it ensuring a minimum level of security for everyone, we were all just waiting for this government to start trying to persuade us that it "constrained free markets" "held back business" or was simply "un-necessary regulation"

Even I didn't expect them to argue that sick or disabled people should work below minimum wage because they are "less productive" though.  Whatever attempts Philip Davies MP (Con) makes to dress this up as actually being in the interests of disabled people themselves, he obviously can't see how sickeningly frightening his remarks are.

Of ALL the solutions to the problems of a fair wage, equality of employment and access to suitable jobs for sick or disabled people, paying people less simply to pander to the discrimination of employers is wrong in every way.

I've heard lot's of people say, "Oh, it's OK, the bill won't pass."

That it is even being given time in our Parliament fills me with dread.

Thursday, 16 June 2011

I met a Man.... Guest Poem

I absolutely love this! Huge chuckling kudos to and thanks for letting me reproduce it here!
"This poem was inspired by Bendy Girl’s post on Tuesday. With thanks to David Cameron, Ed Miliband and a thousand comment threads.

I Met a Man; or Hell in a Handcart

I met a man who met a man who met a man who said,
“My work-shy next-door neighbour is a-swinging of the lead,
He says that he’s disabled but I know that limp’s a fake,
He’s not really sick, he’s just a shirker on the take.”
I met a man who met a man who’d been told by another,
That further down the street there lived a lazy single mother,
With twenty kids, a welfare cheque, a house just like a castle,
Prada, Gucci, Louboutin and a bank account in Basel.
I met a man who met a man who said he knew for sure,
That Britain’s welfare state is like an ever open door,
Anyone and everyone from here to Timbuktu,
Scrounging off the taxes that are paid by me and you.
I met a man who met a man who said it was a fact,
We’d never even notice if all council staff were sacked,
He also knew for certain, though how he wouldn’t say,
Those council fat-cat bosses earn a thousand pounds a day.
I met a man who met a man who swore that it was true,
Senior civil servants only work from ten till two,
Then off they go for lunch breaks in posh restaurants and bars,
And slope off home at tea time in their chauffeur driven cars.
I met a man who met a man who said he knew a bloke,
Sacked for telling nothing but a silly little joke,
The woman that he said it to is richer than a queen,
A million compensation for hurt feelings, it would seem.
I met a man who met a man who told a chilling tale,
(He knew that it was true because he’d read it in the Mail)
Of a Brave New Britain run by Muslims, reds and gays,
Coming to a street near you within the next few days.
I met a man who met a man who’d overheard by chance,
An evil EU plot to make Great Britain part of France,
They’ll make us drink in litres and put garlic on our bread,
And honest John and Jack must change to Jean and Jacques instead.
I met a man who met a man who said that it’s no wonder
With all these bums and scroungers that the country’s going under,
Things ain’t what they used to be so sound the warning bell,
Climb aboard the handcart for we’re on our way to hell.

Wednesday, 15 June 2011

Ed Miliband 100% right at PMQs

Ed Miliband is 100% right to say at PMQs that 7000 cancer patients will be affected by the time limit on ESA.

The real scandal is that 700,000 other people with serious conditions, found not fully fit for work will also be affected and lose all of their contributory ESA after 1 year.

I don't care how unpopular this might sound today, this is the single biggest issue at stake in today's vote on the Welfare Reform Bill.

Great to see passion and all questions devoted to this issue.

Ed Miliband 100% right at PMQs

Ed Miliband is 100% right to say at PMQs that 7000 cancer patients will be affected by the time limit on ESA.

The real scandal is that 700,000 other people with serious conditions, found not fully fit for work will also be affected and lose all of their contributory ESA after 1 year.

I don't care how unpopular this might sound today, this is the single biggest issue at stake in today's vote on the Welfare Reform Bill.

Great to see passion and all questions devoted to this issue.

Today at 5pm - Clear your Diaries.... #AskEdM

Awww, that's nice, Ed Miliband wants to know what we thought of his speech!

He'll be hosting a web-chat 5.00pm today on Twitter! Using the hashtag #AskEdM

Wouldn't it be good if 1000's of people asked him why he chose to use a man on Incapacity Benefit to paint a picture of how society is irresponsible, going on to use this man as an example of "not showing responsibility" "shirking his duties" "abusing the system because he could work but didn't" "ripping off our society" he was not a "good citizen" he was "abusing the trust of his neighbours"......?

Why he supported a scrounger narrative that is already causing a rise in disability hate crime?
What he based his 2 minute Work Capability Assessment on?
Why he won't admit that ESA is a shambles

Remember, Mr Miliband has been consulting the country. Listening to the concerns of those who "work hard and do the right thing" He want's to know what Labour got wrong. He's heard from the Daily Mail loud and clear it seems. Today, we could make sure that he hears from us.

**It's nearly lunchtime now. For enough people to make an impact, we need to send this to every campaigner, supporter, friend and contact we can think of. OK. it won't change the world, but it might cause a stir. Pls RT, link and mail out. 

Tuesday, 14 June 2011

Liberal Conspiracy ask Liam Byrne to listen to us!!

Finding this article on was en extremely nice surprise. A million thanks to Don Paskini and Sunny Hundal. 

How Liam Byrne could help save his career through welfare reform

by Don Paskini     
June 14, 2011 at 2:30 pm

Liam Byrne is currently one of Labour’s most important politicians. He combines his role in co-ordinating the party’s policy review with leading for Labour on Work and Pensions. His 
hobbies include “banging on” about immigration, deficit reduction and welfare reform.

But in fewer than eighteen months, his political career is almost certainly going to be over. Here’s why and how the principles of responsibility and reciprocity could help him save his job, while at the same time helping reform the welfare state for the better.

Every two years, Labour elects its Shadow Cabinet. Last time, Liam finished in 19th place, scraping into the Shadow Cabinet by just one vote. Next time, competition will be even fiercer, as some of Labour’s rising stars put their names forward, and David Miliband may return. It may be that even if he doesn’t get elected by fellow MPs, he will be offered some kind of role through the “Affirmative Action for special advisers and management consultants” programme which Labour has run in recent years.

We’ve heard from Liam and from Ed Miliband that Labour’s approach to welfare is going to be built around “responsibility”This approach draws on research done by the Fabian Society.

Once you get past drivel such as Ed Miliband’s charming anecdote about how he met a disabled scrounger and carried out an impromptu assessment of his capability to work, there is plenty of merit in the idea that greater reciprocity in the welfare state could help to rebuild public support and make the system work better for everyone. But it will require a lot more 

Ed Miliband’s idea of adjusting social housing allocations policies is

(a) something which is already happening and
(b) the housing policy equivalent of rearranging deckchairs as the ship sinks – given the huge shortage of affordable housing.

Or take Liam Byrne’s idea that people who aren’t making an effort to look for jobs should have weekly appointments ignores the fact that

(a) this can already happen,
(b) it doesn’t work very well, and
(c) the way welfare to work provision is funded on payment for sustainable job outcomes

means that there is every incentive to see people who don’t want a job as infrequently as possible, and instead to focus on people who are work ready and want to do so.

No one should reasonably expect Labour to have a fully worked out set of proposals yet, but it will be Liam’s job to work out some of these details.

Now, he might well make a right Purnell of doing this, coming up with a set of unworkable, incompetent proposals which are designed to sound tough and nothing more. And no matter how “tough” the proposals, the Tories will come up with something “tougher” and more vindictive. We’d like to offer him an alternative.

Sue Marsh and the Broken of Britain have done some outstanding work on gathering ideas on how the current system isn’t working and what should be done instead to help sick and disabled people. Kate Green MP is an expert in what works in tackling poverty, and has called for the “moral imperative” of addressing the barriers to work rather than attacking the workless.

Plus, there’s a lot to be learned from Labour’s record in government in cutting child poverty, which researchers from America describe as almost miraculous.

So here’s our deal, based on the principles of responsibility and reciprocity. Liam Byrne could spend the next few months listening to the people who are hardest hit by the government’s cuts, working with groups like Broken of Britain, listening to Kate Green’s advice to stop demonising people who are out of work, and coming up with common sense policies such as reforming ESA and getting rid of Atos; policies which really help people into work and supporting them in work; and which help make sure that people who can’t work have an adequate income to live with dignity.

If he can show that he really, really listened, we’ll encourage Labour MPs to vote for him in the next Shadow Cabinet elections.

As Liam says, we need “a bargain that rewards the people who do the right thing”. If he does the right thing and listens to people living in poverty, then his reward would be greater support from the Labour grassroots and greater job security.