Monday 29 July 2013

Did I touch a nerve IDS?

Oh, IDS is a charmer eh? This petulant, boastful piece of fantasy in the Guardian yesterday smacks of a spoilt child not quite getting exactly what he wants.

Last week, I wrote my own piece for CiF asking why, when a system is failing as badly as Atos WCAs would you take that system and roll it out to millions of the most vulnerable sick and disabled people in the country before making sure that it was fair? 

What's more, why would you constantly increase the rate of unfair assessments from around 25,000 a month initially to over 100,000 now? I hoped that these questions would cause a few awkward, anxious moments over at the DWP - after all, surely it must be someone's job to keep an eye on what the country says about the God-fearing minister.

I noticed a little throw away line in IDS article from yesterday :

"Questions have been raised about whether the dramatic pace of our reforms is too difficult to implement."

As far as I know, that was me asking those questions IDS. You know, and I know, that other contractors have been bought in to increase capacity, to cram even more of these vulnerable claimants through a test you know to be unfair - it has nothing to do with improving quality - only you can do that over at the DWP by changing the processes and descriptors.

You know, and I know, that the system is grinding to a halt with nearly half a million claimants waiting way longer in the "assessment phase" than the 13 week target.

You and I know that Atos have constantly increased the number of HCPs (assessors) they employ and asked them to work overtime and weekends trying to clear the backlogs.

And you and I know you cannot possibly hit your target of re-assessing the remaining million Incapacity Benefit claimants by May 2014.

So yes IDS, I raised those questions, but I don't expect for one second to get an answer.

Thanks for responding to my article though, I must have really touched a nerve eh?

Sunday 28 July 2013

Ex-Atos nurse tells of disgust at Assessments

It's clearly not enough for sick and disabled people to tell of their horrific experiences of an Atos Assessment for Employment and Support Allowance.

It's clearly not enough for journalists to write exposes and TV companies to produce documentaries.

It's clearly not enough for politicians from all sides of the House to debate the failings and iniquities of the Atos test and demand that it be improved.

It's clearly not enough for the BMA and the RCGPs to demand the immediate withdrawal of the test.

It's clearly not enough for it to be found unfit for purpose by every major study into it and for every major charity and DPO to denounce it as cruel and inhumane.

So perhaps it will be enough for you to listen to this nurse, who used to work for Atos, carrying out the assessments, her professional disgust, how demoralised she felt, how disgusted by the targets and criteria she was set, the poor quality of the doctors, the insistence that she reject a % of claims every day regardless of merit.

Will this be enough? Will we listen to this? Will we wake up and stop this assault on  decency and dignity? At some point we will. It's just a matter of time. And how many innocent, vulnerable people suffer until we do.  

Listen here on LBC Radio :

Saturday 27 July 2013

"Superhumans"?? Again? I thought we went over that?

Look, i can't help it, but the Channel 4 "Superhumans" ad, celebrating a year since the Paralympics got me all ggrrrrrrr.

I would have had a little rant, but @Hossylass just sent me hers from last year and I couldn't have said it better :

Clubbed to death……. By a Paralympian (By @hossylass)

Yep it’s that time of year again, and even worse, it’s that time of four years. Paralympic year.
Now I love the Paralympics. I love Paralympians. They are my kind of people. I am a bit jealous though, you know, just a tiny bit. About the size of Jupiter jealous.
I’m not jealous about their success, far from it. I shall be holding my breath in the swimming, twitching and clicking through the dressage, and probably shitting myself during the weightlifting. Yep, I get that involved.
I shall weep at every win, and weep at the losses, sob at the medal ceremonies and dissolve completely at the National Anthem. It’s going to be a right snot-fest.
So why am I jealous? To be honest I don’t think I am. I am just a bit wistful. I want that opportunity, I want to be in that huge competition, I want to be a part of it, but it’s never going to happen as I have, quite simply, got the wrong disability.
It’s wrong for society, its wrong for the Paralympics and it’s wrong for me. I need a disability I can overcome. I need a disability that challenges me to find new and adaptive ways to overcome it. I need a disability that requires tenacity and guts, but is ultimately a massive inconvenience.
But like the majority of disabled people, I got a disability that isn’t.
It isn’t a Paralympian disability. It’s a crappy hiding-behind-closed-curtains disability. Is a fucking lie-down-in-a-darkened-room disability. It’s not even a disability. It’s a gang of stuff going wrong, refusing to behave, ASBO disability.
ASBO disability is a condition, it’s a syndrome, and it’s a collection of pain and exhaustion. Its fear and random, and OMG-is-that-ASBO-or-something-else rush me to A&E stuff. It’s Heartsink Doctor, its rogered-up-the-arse-by-an-elephant, it’s pathetic.
And it ain’t Paralympian.
ASBO disability for me is EDS, and FMS, and CFS, and sleep psychosis. It means that sometimes ASBO disability behaves and lets me concentrate on the ordinary stuff, like my eczema, or reading a book, but in the main ASBO disability is there, playing up, being naughty, demanding attention, making me cry.
But ASBO disability exists, and it exists for most disabled people. It’s what makes sick people disabled and disabled people sick. ASBO disability can mean you get a sickness benefit and a disability benefit, or neither, or one but not the other.
ASBO disability is currently turning the media into a whirlpool of sharks, 99% gristle and teeth, 1% intelligence. And you can’t educate gristle – God knows I have tried. We all have. We have stared in disbelief at Heartsink Doctor, realising that yet again most of a consultation will be taken up in a tedious explanation of ASBO disability. We have been left speechless in the face of ignorance from friends, family and neighbours. We have given up by the time it gets to Social Services. ASBO disability wins because we just can’t force ourselves to describe it yet again.
And because of this, because we are so exhausted by our ASBO’s, because people can’t understand it instantly, we could easily lose the battle of hearts and minds.
We may not look very disabled, and we may not look very sick. We won’t get into the Paralympics, unless they invent some very new and special events involving vomit, pain and shaking with exhaustion.
And that is why all the people with ASBO disabilities are about to be clubbed to death by the Paralympians. Or more accurately, clubbed to death by the Paralympics.
Paralympics have a classification system. It’s rough; I’ve tried to fit into it and failed. But it can neatly grade a person into a group, each group being of the same level of loss of function, impairment or absence. Use whichever language you chose. But it’s there. A quantifiable scale.
ASBO disability refuses to fit on this scale, but it won’t stop Governments and the media using this scale as the only scale.
“Disabled? No you’re not, because look at all these marvellous people who are REALLY disabled, and look what they can do”.
We’ve got weeks of this. Weeks of being told we are not disabled. Weeks of being told that Paralympians are “inspiring” and “genuinely” disabled.
Weeks of being told that we are not. Or a lifetime. But the next few weeks more so.
I can sense the clubs descending already.
Form a Turtle, man the defences, and turn up the heat on the boiling oil pan – we have a battle ahead. Let’s just hope that our friends in the Paralympics will support us as much as we will be supporting them.

Wednesday 24 July 2013

Work and Pensions Committee inquiry into Housing "reforms"

If your fingers are not worn to nubs writing letters to MPs, taking part in consultations and generally letting me know how welfare reform is affecting you, then here's another good cause for your keyboard.

The cross party Work and Pensions Committee are holding an enquiry into how all of the housing changes introduced as part of this government's welfare "reforms" are affecting people.

Many of you have written to me with heartbreaking stories or farcical stories. PLEASE consider submitting them to this review. It's an independent, non-partisan committee and if we don't tell people how we're affected by these changes, how will they ever know?

It's so easy to say "Oh, what's the point? Nothing will change, they won't listen" but at some point they WILL listen, things WILL change and we will say that we never gave up. Please take just a few more minutes to send in your views.

A Few Bad Men

Anyone who has listened to the utterances of Lord Freud, Minister for Welfare Reform over the last three years as he blunders through the minefield of welfare will no doubt have a personal anti-favourite to quote.

There was "The poor should take more risks as they have the least to lose"

Later, sick and disabled people were shocked to find ourselves referred to as "Stock" like so many cattle.

There was the time he referred to sickness benefits as "An incubator for lifelong idleness"

And more recently of course, he really outdid himself with the suggestion that food banks were only on the rise because people would always grasp at the chance of free food

I could go on, but you get the idea.

Here is a man who really does not like poor people. He doubts their motives, believes they are motivated only by greed and laziness, and bases every policy announcement on the belief that all will cheat if given the chance. In the belief that we are all "feckless" and "idle", he provides a constant barrage of measures that hurt, judge and restrict. Every pronouncement suggests that people are inherently bad, inherently dishonest.

Lately, I've been musing on what this says about Lord Freud himself. This is a man remember, who when faced with losing three significant votes in the House of Lords over welfare reform, tried to hold the votes again when most of the Labour peers had gone home to reverse the decisions. Shabby and dishonest to say the least.

I'm no psychologist, but I've heard it said that we judge the world on our own place in it. We dislike in others, what we see in ourselves. Only a cruel, greedy, callous man could surely see so much cruelty and greed in others?

And here is the problem. A problem shared by Iain Duncan-Smith, and even David Cameron himself. You cannot design a compassionate system if you have no compassion for those dependent upon it. You cannot achieve justice and equity if you believe in a fundamentally unfair and unequal society. You cannot empathise with the lives of others if you believe that people are inherently greedy and selfish.

Every time that Lord Fraud opens his mouth, it seems we learn a little more about him, but not so much about society in general.


Tuesday 23 July 2013

WCA - Call for Evidence

So, with Harrington gone, the Fourth "Independent" review of Work Capability Assessments is being compiled. The new reviewer, Dr Paul Litchfield is asking for evidence and despite patchy results in the past, we must do all we can to let him know just how WCAs fail and are still failing.

I would urge anyone who has been through a WCA to send their thoughts in - it's only by submitting evidence - time and again if necessary - that our views will be heard.

Here are the details

Please don't let cynicism stop you from taking part.

Monday 22 July 2013

John Pring's Disability News Roundup

Another week of news from the tireless John Pring

Friday 19 July 2013

Will GPs betray the Sick and Disabled too??

Yesterday, BBC Wales reported that GPs in South East Wales have been instructed not to write letters to support their patient's benefit appeals. The Bro Taf local medical committee, representing GPs, says "writing letters stops doctors seeing ill patients" amounting to an "Abuse of resources"

It clearly escaped them that these patients are ill enough to be making a claim for out of work subsistence benefits and therefore likely to be some of the most unwell people attending their surgeries.

However, more importantly, DWP ministers have blamed the staggering 43% ESA (Employment and Support Allowance) appeal rate on claimants not requesting and submitting enough medical evidence. As Mark Hoban claimed,

What’s happening too often is people are suggesting to claimants ‘oh, just leave the medical evidence until the appeal’ – there’s a shared responsibility here.”

In theory, within the claim process, Atos is expected to request evidence from a claimant’s doctor when the claimant is likely to be placed in the Suport Group. For the year up to October 2012, Atos only requested such evidence (as an ESA113 form) in 27.2% of all ESA referrals; 23.8% of these were not returned by GPs.

Sadly, the House of Commons overturned a recommendation by the House of Lords that supporting evidence be sought in all ESA cases.

Claimants already overwhelming feel that the medical evidence they do submit is ignored by Atos assessors and DWP decision makers and 40% of cases that do go to appeal are overturned.

If GPs withdraw their support in this way, the claimant is entirely at the mercy of a tick-box computer based questionnaire, carried out by someone who does not have to be a doctor and who need have no knowledge at all of their condition or disability. This tick-box system has been shown to be inadequate and unfit for purpose by every major study. Both the BMA (British Medical Association) and the RCGPs (Royal College of GPs) have called for the assessment (WCA) to be withdrawn with immediate effect.

The opinion of a GP who knows the claimant well is often the only lifeline left to many facing this bleak, impersonal "assessment", If they refuse to help, they will be abandoning millions to a broken system.

It simply must not happen.

**Update. This comment was left on The Void and since, Bro Taf have said they will be issuing a statement later today. Hopefully, this measure will not be maintained : 

Karin : "I have rung and had a long discussion with someone from the Bro Taf LMC re. this letter. I was angry but polite and she heard me out and understood where I was coming from. ( I have won Appeals recently after going through sheer hell and poverty for 18 months waiting for Tribunals).
She told me the letter is going to be withdrawn. She also accepted that the wording was too strong and a symptom of frustration (more later) and not a reflection of the LMC on patients at all.
The letter is advice only and no GP can be forced to act upon it as practices are independent and can do as they please.
She explained that the letter was generated out of terrible frustration that despite the LMCs telling the DWP time and time again that there needs to be a clear fair system and guidance for people who have to appeal, whereras now there is none, so naturally people go to their GPs. She went on to describe how many GP practices are almost at meltdown point due to inadequate funding and time spent by GPs having to write letter after letter and form after form often doing repeats , because the DWP haven’t told appellants that repetition won’t help.their case. I think I understood from our talk that Gps are funded to fill parts of forms from the DWP and anything else isn’t funded, however many GPs do do these extras
My understanding is that the DWP isn’t listening,to them or to claimants, MPs aren’t listening, pressure is peaking for us desperate claimants and building up in GPs.. Is this so that we fight eachother rather than uniting to effect the change that we desperately need? Of course it is us patients that suffer so terribly and waiting times to see GPs are growing.which certainly does not help."
From Bor Taf "We will be issuing a formal statement later today and this will be sent to you.
Bro Taf LMC Ltd
Henstaff Court Business Centre
CF72 8NG
Tel: 02920899381

Thursday 18 July 2013

HSJ Inspirational Women in Healthcare

Last night, Dave and I schlepped up to That Big London for a reception I'd known about for some time. A while ago, the Health Service Journal had emailed me asking if they could send a photographer to my home for a "feature" they were preparing.

The feature turned out to be an award - I had been chosen by a panel of judges as one of their "Inspirational Women in Healthcare". This sounded very exciting, though I knew little more. There would be a schmoozy reception at Barclays HQ in South Bank, but as the days passed, I wondered what on earth I could have done to deserve such an honour. I'm "just a blogger" and this was clearly for CEOs of NHS Trusts, Professors who were experts in their specialities and transformative health providers.

I had arranged a meeting with Paul Maynard beforehand, who had been very keen to engage and to read the long, critical emails I had sent following his ill-judged speech at the Cumulative Impact Assessment Debate. This will have to wait for another blog, but I think Mr Maynard has been thinking very carefully about his speech  and to his credit, may have learnt more in the last week than he had for some time.

I'd never been to Canary Wharf before. ISN'T it glitzy?!?!?! Endless pricey shopping malls, glinting with corporate success, towering phallic symbols of financial testosterone, glass elevators and twinkling fountains. The courtyards between the glass and steel monoliths to power buzzed and hummed with chi-chi restaurants and bars. So THAT'S where all the rich young things have been sitting out the recession!!

The evening was lovely. We were plied with free booze and teeny-weeny nibbles until The editor of the HSJ, Alastair McLellan, made a short speech and presented us all with a copy of the feature pullout that would be appearing in the journal today. And there, amongst the great and the good of healthcare innovation, was little old me, a double page picture of my smiling face beaming out from the glossy spread.

It was clear this was a "Big Deal" and I felt enormously honoured and proud to be included.

Warm and fuzzy, we rushed for the last train home from London Bridge, just making it onto the platform with a few minutes to spare. Dave rushed off to get me a cup of tea, leaving me appearing stranded on the platform. A nice man called Rory asked if I needed help to get on the train, which was just pulling up. I explained that Dave would be back any minute and he asked about my evening. Something made me tell him with pride about the lovely award and he beamed.

A train porter appeared from the open train door, immediately blew his whistle and announced that the train was leaving! I looked for Dave in horror, but he wasn't back! I shouted to the porter that I needed to get onto the train from  my wheelchair, but he said "She has to get the next one" and started to close the doors. I pleaded with him - I just needed a minute to get on, and this was the last train I could get, but he insisted.

But what's this? A mini-revolution? An uprising? Suddenly, legions of passengers were appealing to the porter to hold the doors just for a minute "She has to get on, we'll help her" as I saw Dave running towards me, scalding tea sploshing all over his hands. Two strapping blokes put their bodies physically in the way of the doors and one even prised them back open with his body weight. A lady behind me started to complain loudly that this was "just bloody typical, we HAVE to get her on" and voices from within the carriage and behind me on the platform urged and pleaded until I managed to haul myself through the doors with Dave launching the wheelchair and himself on behind me in the very nick of time.

There were cheers. We really were "All in it Together" and for the second time that day I was desperately chuffed. So "thank you" to the lovely people who wouldn't accept "No Go Britain" on my behalf.

But much more importantly, thank you to YOU. I wrote this comment last night on Facebook after an overwhelming response to my announcement about the award. Hundreds had "liked" my status and left beautiful comments. It says everything I want to say to you all, so I'll re-print it here.

"Wow! I'm overwhelmed by so many good wishes and likes! 

I was thrilled when they told me. I always wrote about health. all I EVER wanted to be was an authentic patient voice. Now that I have that opportunity I feel like the most blessed person in the world. I get to do the one thing I swore I would do, dreamed of doing!! It's remarkable. 

But without you all reading and sharing and believing in the Spartacus Report and funding it trustingly and HOPING, I'd still be writing unanswered letters to politicians and newspapers and they would still be ignoring me. It might not be much, but politicians and journalists don't ignore me any more. Quite the opposite. 

Tonight, the staff of the NHS honoured me in a way and it feels like a kind of closure. This has made me see that you can't know you're own impact. I marvel at it with Dave all the time. Every time something like this happens, I shake my head and wonder how. I'm still just writing letters and journals of my experiences, good and bad and writing the personal to help me make sense of it all. 

Only now you all read it and most weeks, someone sends me a private message telling me that I kept them going in some of their darkest times. And occasionally, like tonight, I get to do nice glam schmoozy things too, which is always nice I'm honoured by your trust and support. If you keep giving it, I promise to do everything I can to use it wisely. Thank you all so much"

Wednesday 17 July 2013

Why Andy Burnham is Right about an integrated Health and Social Care

This rather excellent article in the Telegraph of all places, bravely tackles the real issues facing the NHS, free from spin and political point scoring.

It highlights Andy Burnham's driving passion to integrate Health and Social Care in the UK. A genuine perusal of the OECD health stats released last week make challenging reading for proponents of both private and public healthcare. There are no easy answers neither solution offers a golden promise of a better tomorrow. What shines through however, as Mary Riddell rightly points out, is that the NHS does what is does remarkably well for less money than most developed nations. Not even in the Top 10 for Health spending, with fewer hospital beds and staff, the NHS manages to be the most equitable health service in the world and one of the most efficient.

How has the NHS pulled off this extraordinary challenge, repeatedly through decades of underfunding and ill thought through "reforms"?

It can only be attributed to the unfailing loyalty and support shown by staff and patients alike. We WANT the NHS to succeed. We work harder, cram in more and at times seem to pull off a miracle close to feeding the five thousand with a few loaves and fishes.

Burnham's plan to integrate Health and Social Care might just be the salvation the NHS has been creakingly waiting for.

Academics and politicians will no doubt argue the merits and drawbacks of the idea and according to Riddell, the main objections from the Labour front bench is cost.

As a patient and soon to be Social Care user, perhaps a little real insight from one at mercy of the status quo might help.

Imagine living with a long term health condition of disability that requires regular and expensive healthcare interventions. There is a pattern, and excuse me if I focus on what I know best - long term illness.

You are well for a while. Or at least not as grindingly unwell as usual. you manage fairly well alone, doing all you can to avoid hospital and incapacity. But as symptoms worsen, you are often left utterly stranded. Not quite ill enough yet for the endgame of in-patient care and possibly surgery or intensive treatment, you are not well enough to cope at home.

So begins an endless round of interviews, assessments, more interviews, financial analysis, endless forms and a permanent place on the end of a phone trying to navigate the endlessly frustrating maze of possible support.

In my case, I've never actually managed to arranged help from social services before my health has descended into crisis and I join a waiting list for acute care.

Once the NHS has picked up the pieces, thousands and thousands of patients spend weeks longer than necessary waiting to go home or the halfway house of a convalescent home or residential care. A recent study showed the average wait for an elderly patient is 28 days. 28 days of unnecessary bed blocking, unnecessary in-patient care and frustrated lives.

Now imagine that as your health deteriorates, your consultant can contact the local social services, arrange necessary care and support easily and quickly, based on need - and above all - prevention.

A carer comes daily to help you wash or move about, to prepare a nutritious meal and ease the burdens of running a home and possibly a family. You have the chance to rest, eat well, someone helps you to manage and access treatments from home that would otherwise involve a hospital stay and with a little luck and some genuine support you avoid crisis altogether.

If the two systems become one, they can communicate more efficiently. Their budgets will be intertwined, so prevention becomes as important as cure. At my last hospital, a team of specially trained bowel nurses would be able to arrange high level interventions from home, supported by a district nurse, but all too often the process took far too long.

Far too many vulnerable patients become in-patients for want of the correct support at home. Chronic illness and mental health conditions will become by far the biggest burdens on 21st century health around the world and in so many cases, this need not be the case.

Currently, with local authorities facing eye watering cuts of over 25% over the course of the parliament, social care has been cut back drastically, with many cutting "moderate" care needs altogether. However, as campaigners have argued, for all the reasons I list above, this is a totally false economy. Needs that were "moderate" (and therefore less costly to the taxpayer) soon become "substantial" or "critical" through neglect and the only place left to turn is the NHS. The pointless waste is heartbreaking as almost anyone actually at the mercy of the system could tell you.

Our entire emphasis (and indeed, the emphasis of all healthcare systems around the developed world) needs to shift from cure to prevention. Any reform will only succeed if this is the case. Obesity, smoking, drinking alcohol, increasing long term illness and mental health crisis ALL reduce with efficient and genuinely enabling support structures.

So my message to the two Ed's is Burnham is right. His plan to integrate health and social care could genuinely revolutionise the way we treat our population, saving billions in pointless interventions and unnecessary and traumatic in-patient stays. We don't just need to consider his plan, we need to stretch every sinew to make sure that it comes into being. Only by reversing the swingeing cuts to care can we re-balance the system towards prevention. The rewards would certainly be astonishing.

Tuesday 16 July 2013

We need to have a chat about the NHS

Lately, I've noticed - indeed been on the receiving end - of a new phenomenon.

Suddenly, all over middle England, those drifting gently to the right of a fairly rightish centreground keep popping up on my timelines or in my inbox - or even all over my telly - to tell me patient care in the NHS is not all that it should be.

They message me with glee (which feels quite unseemly) to tell me "13,000 patients died at 14 failing health trusts under Labour" What do I say to that, eh? Eh? "Explain yourself Marsh" they gloat "What do you have to say about your precious NHS now?

Leaving aside the fact it's not true (Why would it be? I'm getting wholly accustomed to misleading stats from this government eagerly lapped up by the media")

Can someone tell me when I became Defender General of the NHS? I missed the memo.

Anyone who's read a single one of my NHS articles must surely know I am as critical of patient care, organisational waste and arrogant corporate cover-ups as I could be? What's more, my criticism has been public and unreserved, believe me, a dangerous stance to take. They surely know I've suffered all of them myself, not once, but many, many times?

But here's the thing. I've been writing about poor patient care for decades. I've been trying to uncover abuses and failures such as those so gleefully seized upon now for most of my life. As those at Mid Staffs and many other hospitals found out, no-one wanted to know. It was virtually impossible to expose poor patient care, let alone get anything done about it. It was hushed up, notes mysteriously disappeared, staff suffered sudden inexplicable memory loss.

How is it these partisans cared not a jot before? How is it I wrote to their very newspapers numerous times about exactly the failures they now adore, yet they were never interested.

Not, that is, until a Conservative government set about dismantling the NHS. Suddenly, in the Express (O'Flynn, you know who you are) Mail, and Telegraph the NHS is a "vast monolith", out of control, unable to meet patients needs due to it's vast public bloating.

The irony is, things have very much improved over the years, not worsened. There are close to a thousand NHS Trusts - Acute trusts, mental health trusts, foundation trusts - for 14 to be failing is tragic but perfectly likely. In every system there is the best, the worst and everything in between. Telling the families of those who experienced poor care or lost loved ones that the system is in fact remarkably functional won't help a jot. Using their pain to poke lefties like me with is bloody disgusting.

Despite all it's faults, I DO love the NHS, these point-scoring fools are right about that. Just swap with me one night when something bursts or ruptures and I am rushed screaming in a whirl of blue flashing lights to the nearest hospital. Swap as I am taken by gurney into A&E, swap as the highly trained staff recognise a genuine crisis and rush around me, intubating and injecting and setting up fluids. Swap with me as they calmly shout orders, acting as one, like a well oiled machine. Swap with me as they ease the dreadful pain and stabilise my heart. Swap with me as they rush me in a blur of sterile corridors towards an operating table and salvation. Swap as I thank any deity who may be listening that no-one is shoving a form in front of my dying face and asking about my "coverage" - worse still, refusing to save me if I have none"

Oh the NHS do acute better than anywhere. Make no mistake. Yes, I've sat in hospital beds so frustrated I wonder how I will make myself stay. I've suffered and witnessed atrocious care. All of those things can and must be addressed.

But they needed addressing 15 years ago too. They needed addressing under the Tories and they needed addressing under Labour. The self regulatory tradition of our NHS must be stamped on once and for all. Transparency must be flooded into every nook and cranny.

I've spent around a month a year in hospitals for most of my life. I've stayed across a string of Trusts, in-patient and out-patient, I've seen initiatives come and go, staffing slashed and staffing boosted. I've seen the very best and the very worst. Yet this new string of critics, with no more than a hip replacement and a dodgy knee between them, try to tell ME where the NHS fails and how that feels!!! The irony.

I love the NHS despite it's faults. I love the tireless dedication of an undervalued, underpaid staff who should have given up and rolled over years ago, but somehow never do, whatever the provocation from Westminster. I love knowing that no matter what I need to stay alive, I will get it. Possibly a little later than I'd like, possibly with a little tussling along the way, but I'll get it. I love that we regulate our medicines properly, unlike our drug-happy cousins in the US. I love that any drug or treatment will be available to me, based on need, regardless of cost. I love that I have a GP just down the road who knows me and sees us patients on the same day we call for an appointment.

I HATE the abuse and cruelty and utter helplessness of a bad nurse or poor doctor. Poor care has pushed me to the very brink of insanity. We have to do everything we can to make sure that no-one ever suffers again as I have, as many have, as those patients at those 14 trusts have.

But using the worst to imply there is no good is shameful. Actually shameful. Don't clog up my timelines with any more of your opportunistic, ignorant, uninformed nonsense, I shall simply direct you to this post. And remember I told you this.

Perhaps, in a few years, we WILL lose the NHS. Perhaps it will no longer be free at the point of care, no longer cover all regardless of ability to pay. Perhaps it will have fractured into a thousand private clinics.

And if you every find yourself on that gurney at 3am I promise you, unreservedly, you will wonder why on earth we gave up one of the best, most equitable achievements in our history. For your sake, I do hope you live to regret it.

Monday 15 July 2013

Play : Debunk, the new fun welfare game!

I know, I know, I shouldn't encourage them. Linking just leads them on. But I just read this article by Daniel Hannan in the Telegraph (Yep, that is "The NHS has been a 60 year mistake" Hannan.) and I laughed so much, I couldn't resist.

I have a challenge!! How many inaccuracies can you count in one glorious welfare article? I will include sound-bites-with-no-basis and distorted-statistics.

The winner, with the greatest number of debunked whoppers, with links to the actual information from gov own sources, gets a guest post and open letter, written by me to Mr Hannan, here on Diary of a Benefit Scrounger. This is the finest example of utter nonsense uttered by any MP ever. And it has some competition.

Get stuck in guys!

**Update Meh, seems I was a bit late to the party and Left Foot Forward already gave Hannan a good scorn-lashing in this wonderful article

When you stop laughing, if you can take any more vindication on a full stomach, heres Jonathan Portes from NIESR putting a fairly, erm, forceful case.

Sunday 14 July 2013

Sorry, but we're just going to have to borrow Australia....

I've had the best idea!! I can't believe no-one thought of it before!!

See, it seems we've reached a bit of an impasse. Capitalism is eating and gambling it's way to an early grave and we, pretty much everyone else, are a bit fed up with paying for it. It's getting a bit shaky around the place - Europe, North Africa, The Middle East, we're getting a bit fed up.

Most of us just dream of living in a beautiful village, somewhere where neighbours eat lunch outside in the street on Sundays and everyone brings a plate or a bottle. Where the olives grow or the fish are fresh. We want to listen to music round a campfire and do something we love, while the kids run around having fun.

So I say we try a little experiment. All the hippies and artisans and dreamers and believers and freedom fighters can have Australia. It'll be a bit cramped, but I reckon if we ask nicely, the capitalists'll throw in Portugal, Italy, Spain, Greece and Ireland. Financial basket cases, but some of the nicest places to be on the planet. Win win for Team-Dreamer already!

Actually, there's not much point in the people in Norway, Iceland, Denmark or Holland moving either if they don't want to. Not everyone will be able to bear the heat in Oz and they pretty much sussed this stuff decades ago, just couldn't persuade the Aussies.

But we have more to offer now! We have all the doctors and nurses and teachers, capitalists are hating on them all over the place. We even have the best of the lawyers, committed as they are to justice, and in despair as they witness it's erosion in "democracies" around the world.

We get the people who make things and like things and grow things and cook things and paint things and sing things and write things. We get the lovers and the dreamers and the one's who are fighting, all around the world, right now, for a better way.

Meanwhile, the capitalists get whatever they want whenever they want it. Nothing banned, no laws to curb their excesses, no stupid human rights laws to get in the way. No namby-pamby "justice", no unions moaning on incessantly about "workers rights" No BBC, no state education, no public health service, everything private, everything paid for, everything gleaming! it's a Daily Express wet dream!

Without our bleeding-heart, lentil munching, fluffy-bunny-loving, killjoy moaning holding them back, they can finally get on and shaft each other as hard and as freely as they like. They get all the "most ambitious" bankers and the "ruthless" lawyers and the "go-getting" entrepreneurs. They get the CEOs and Media Moguls and Traders and Hedge Fund Managers. The "successes", Mr Big, Mr Flash AND they don't have to mix with rif-raf like us any more! Win win Team-Wanters!! (Careful how you say it ;) They get the private trains and the private care homes and the private schools. They get MacDonalds and Starbucks and BP and Tesco

Think about it Australia, in 20 years, I bet you a lentil to a yacht those sharp suited "successes" will have devoured themselves whole. They'll be as extinct as dinosaurs. The greed and the testosterone and the excess will just implode, drown in it's own anarchy like the last days of Rome. Also, I have a sneaky suspicion there'll be a gender imbalance. We can all move back in once the coast is clear and we'll make you "Honorary Head Country of Happiness" or something.

Who's in?

Thursday 11 July 2013

Open Letter to Paul Maynard

Dear Mr Maynard

I watched your passionate defence of sick and disabled people in the House of Commons during the Opposition Day Debate on a cumulative impact assessment yesterday with a mixture of pride and horror.

Just like you, I believe passionately in the abilities and potential of sick and disabled people too. I too have lived life through the prism of a disability all of my life and like you, I have never let it hold me back. Like you, I went to university and fought hard to work and be accepted for my talents despite very real barriers. Just as 60% of sick and disabled people do in our country every day.

When Labour introduced Employment and Support Allowance, I was horrified by how "disabling" I feared it would be. I fought then, as I fight now. Party politics has nothing to do with it. My own experiences convinced me that however determined I was, I would have to accept a little help from society at particularly difficult times. I hated to admit that. I felt like a failure, felt dismayed that despite my boundless belief in the potential of people to do extraordinary things, I was still only made of flesh and blood - and a particularly sulky tangle of intestines.

Every single day, I remembered how lucky I was. Some days didn't feel very lucky - laying on an operating table waiting for the little-death of anaesthetic or vomiting endlessly over a bowl, delirious with pain and dehydration. But I never forgot that I'd been born to loving parents in one of the wealthiest areas of the wealthiest countries in the world. A country that fought tirelessly to recognise my contributions and tear down barriers to my inclusion. I never forgot the natural gifts that made impairments easier to bear. I never forgot that I had been born with intelligence, determination and a confidence nurtured and tended by the hope and pride of those that loved me.

I used to ponder what my life would have been like if things had been different. Imagine if we were poor, surviving hand to mouth in the baked earth of some third world country. What chances would I have then? Imagine if I was unloved or even more disabled than I was, unable to fulfil any of the potential deep inside me without support. Imagine if I had none of the natural gifts that negate disadvantage. Imagine if my family tore me down rather than building me up, discouraging rather than encouraging. Could I have achieved the things I'd achieved? Can everyone do what I did? Were we all born with the strength and grit to battle on, every single day, even when battles seem lost and hopeless?

And so, I tried with all my will never to judge anyone else. I'd learnt in the hardest way possible that there but for the grace of God go us all. A defective gene, a moment too long in the womb, a skiing accident that breaks bones and futures in an instant - it could happen to anyone at any time and as a society, we owed it to others - and to ourselves - to do all we could to help people achieve their potential. Whoever they were, whatever their impairment or ability.

For some that might mean a full time carer or a little financial support but so be it. I would not for one moment accept indignity where none need occur. What civilized society would do less?

My dear friend is quadriplegic, yet he was the CEO of an international spinal research charity for over 2 decades. However, he only managed it because he had a live in carer, help from the independent living fund and DLA to cover the extra costs of his transport to and from work. A lifetime Conservative voter and supporter, he said the only time he had felt degraded by our social security system was recently, when an "assessor" came to his home and made him feel threatened. Made him feel like a burden when he had always been an asset. Can you imagine how that broke my heart?

Whatever arguments we make, however fervently we believe in the revolutionary brilliance of the social model of disability, however hard we fight for success and with however much determination, we must still exist in a society that is not equal. we must live on an un-level playing field. With all the determination and brilliance in the world, my friend will never manage to heal his own spine.

When cold hard cash is stripped away, for many, our support, dignity and belief are stripped away too. However much we may still want to achieve the miraculous, it simply isn't possible if - born with fewer of the advantages you and I enjoyed - you can't get out of bed unaided, can't wash yourself or escape the confines of home.

I'm sure you know this and so I go back to my opening sentences. I watched you with pride, an MP with with cerebral palsy, just the second in our history. A young man of passion and belief,
fighting with all he has to do his best for people.

But I watched in horror a man who has forgotten the help he had along the way. Forgotten that until recently, he lived in a society that urged him on and protected his right to achieve greatness in law. Forgot his great privilege, turned away from those fellow citizens who understand his life better than most.

Wednesday 10 July 2013

Liam Byrne's Speech on Disability

Here's the full transcript of Liam Byrne's speech on disability today. I'll comment later but knew you were all waiting to see it......

Press release

Wednesday 10th July 2013

For immediate use

A Country Firing on All Cylinders - New Social Security for Disabled People

Liam Byrne MP, Labour’s Shadow Work and Pensions Secretary, in a speech on social security for disabled people, said:

"Five weeks ago Ed Miliband explained how a One Nation Labour government will reform social security so that once again it works for working people.

And for the Labour Party – the party of work – that starts with jobs.

So, over the past month, I’ve made a series of speeches about how we get our country back to work.

There’s a simple reason why.

As Ed Balls explained: because this government throttled the recovery we left in 2010, we have lower growth and higher unemployment and £270 billion less in tax receipts than was planned.

That means this government is borrowing £245 billion more than it
planned – and to pay for it, we now have an attack on the social security system that holds our country together. That is enough money to fund the entire NHS for over two years.

That’s why we need a different plan for the economy. A new plan to put social security back on an even keel.

A new plan that deals with, not dodges long-term rising costs.

I believe that this means a very different set of reforms at the Department for Work and Pensions.

The Work Programme is failing. It does nothing for nine out of ten people it’s supposed to help. We need to stop fighting unemployment with one hand tied behind our back and create a new alliance between the government, the private sector, the third sector and local authorities – like they do in Germany.

We need to support our older workers – the very people who have either cared the most or paid in the most and yet now face unemployment that stretches on the most - longer than for any other age group.

We need to support working parents who want to go back to work but today don’t get enough support to hold down the average part-time job.

We need to transform the way we support young people back to work because they are going to pay for the future of our pensions and our NHS and right now there’s nearly a million of them out of work – something about which I’ll have a lot more to say later in the summer.

And today, I want to talk about why and crucially how we must revitalise support for disabled people

The challenge of the future

The argument for stronger rights for disabled people starts deep in our party’s past: but its logic is dictated by our country’s future.

Quite simply, we are not going to succeed as a country in the new world fast taking shape today, unless we draw on every ounce of talent we’ve got.

Earlier this year, I wrote a book about how Britain is going to succeed in what some are calling the ‘Asian century’.

I spoke to anyone and everyone who had a view.

I’ve visited places like Tianjin connected to China’s capital by high speed rail where they’re building an aerospace industry, a pharmaceuticals industry and a financial services industry – in other words, all the things that we like to think we’re the best at.

One thing everyone had in common was the idea that there is no way on earth Britain is ever going to win a race to the bottom.

Today, 12 years after the China joined the World Trade Organisation, nearly a decade after we doubled the size of Europe, as we stand on the threshold of talks to open a free trade zone between Britain and America, a country which in turn is part of the North American Free Trade Agreement, unskilled workers in Britain compete with people paid 90 per cent in less developed parts of the world.

We are never going to compete and win with a low pay, low skills, low tech strategy.


And if you want proof, here’s a fact to focus the mind.

Over half of unskilled workers in Britain are out of a job.

The highest level on record.

You’ve probably heard of a great new book by David Sainsbury called Progressive Capitalism. I like it because it’s got a big simple message.

The only way we get to win is in what David calls a race to the top.

Where we compete on innovation. High tech. Brain power. New ideas.

Here’s the lesson for us: What we know about innovative societies is that they draw on every ounce of talent.

In other words, our success in the new world that is coming depends on our resolve to give everyone a chance to contribute.

And yet, today we don’t do that.


Because we have not shattered the link between disability and disconnection.

Between disability and disadvantage.

Today, one in five adults in Britain has a disability of some kind.

That means that unless we give all disabled adults the chance to contribute, we’re only drawing on 80 per cent of our power.

We’re only firing on four out of five cylinders.
Are we so rich and are we so prosperous that we can afford to do that?

I don’t think so.

And that is why social security has got to change so that we make the right to work a reality for disabled people in 21st century Britain.

Ed Miliband has said it loud and clear:

Work for everyone who can work, that is our starting point for reform. That’s how we start to bring welfare spending under control.

But today, disabled citizens are far less likely to win the right to work than anyone else – or go to university, or run our major organisations.

Although disabled people are 20 per cent of the population, disabled people hold just 3.5 per cent of public appointments.

Over half of disabled people are economically inactive.

Disabled people are twice as likely to be out of work than non-disabled people.

Over 40 per cent of disabled people have qualifications below 5 A* - C at GCSE.

Even in work, disabled people experience a pay penalty: median hourly wages are 20 per cent lower for disabled women and 12 per cent lower for disabled men.

The result is bad for the country – and it’s bad for disabled people.

A far higher proportion of disabled people live in poverty than anyone else.

According to latest figures from the House of Commons Library, working age disabled adults are 50 per cent more likely to live in poverty than non disabled adults.

A staggering 2.3 million disabled people live in relative poverty –across the UK.

One third of the households in absolute poverty are home to someone with a disability.

We simply cannot go on like this.

The system is broken.

And it’s got to change.

The proportion of the population who reported a long-standing disability or illness has increased by 50 per cent over the last 40 years.

But in the future, improved diagnosis, reduced stigma in reporting disability, and better survival rates for pre-term infants all mean that the proportion of children and young people who will become disabled adults will not fall, it will rise between now and 2020.

So we’re running out of time.

With these great challenges of the future looming before us, it’s very, very depressing to see the Government’s response.

No plan to reform social security for the long term, just a series of petty political games

An Australian friend of mine was telling me about the Lynton Crosby play-book the other day.

“Watch out”, he said, “for a strategy of distract, detach and divide”.

“The Tories will find any issue they can to distract the media from the economy.”

“They’ll try and detach a block of voters from you and make them their own”.

“And they’ll try and divide you one from each other”.

And that’s all we’ve had on welfare policy. A constant search for dividing lines. A constant attempt to divide and rule.

It might make good headlines. But it makes terrible policy. The welfare revolution we were promised has failed because this government is more interested in pitting neighbour against neighbour than in changing things for the better.

Because let me ask you, when did a country ever achieve greatness with citizens fighting each other?

This country has only ever achieved great things, when we pulled together.

When we resolved not to leave anyone behind.

When we listened to that ethical voice in our head that says actually we do have an obligation to look after each other.

Ever since the advent of 'Broken Britain' - remember that? - Tory politicians have served up a diet of stories, arguments, dodgy data devoted to reinforcing a war on disabled people and disability benefits.

The scroungers subtext is never far away or hard to spot. And now we reap a bitter harvest.

A salvo of changes that have created a climate, not of hope but of fear, amongst thousands of disabled people and their families.

It is distraction politics. It is divisive politics

It is in fact an attempt to disguise the basic truth that by the final year of this parliament, the Government is taking 23 per cent more from disabled people and social care than it is off banks.

More than three years into office, this mule-ish government is refusing to learn from experience.

It’s refusing to learn in the light of experience or to make the radical changes that are so clearly needed.

It’s refusing to disperse the climate of fear it has created.

The goal of equality has been dropped from the Government's disability strategy.
The Work Programme is three times worse than doing nothing for disabled people - it’s failing for nearly 95% of new ESA claimants.
The Benefit’s Uprating Bill, without measures to get people back into work, will push 50,000 into poverty whilst millionaires get a tax cut.
Changes to DLA that don’t take any account of what they will do to a person’s ability to go out a work.
The Bedroom Tax will hit 440,000 disabled people even though there are now real concerns it won’t even save any money.
Disabled former workers have lost benefits they paid in for regardless of whether they're fit to work or not.
Families with disabled children will lose up to £1,400 a year when universal credit is introduced even though David Cameron promised to protect them.
The Care Bill does nothing to address the current care crisis for disabled people. So far the debate on social care funding has been almost exclusively about how the system should respond to the demands of the ageing society and not working age disabled people – and as Andy Burnham has said that needs to change.
Research for Scope revealed nearly half of disabled people felt that attitudes towards them had got worse over the last year.
Research for Demos find that disabled people now feel ‘a sense of persecution” and “a perfect storm of mental distress”.
Frankly George Osborne was lucky to get away with boos at the Paralympics. Most of my disabled friends would propose something a little tougher.

The way forward

The father of the National Health Service, Nye Bevan, only ever wrote one book, ‘In Place of Fear’. An extraordinary poetry. On the penultimate page he said this:

'Progress is not the elimination of struggle but rather a change in its term'.

Well, the struggle is intensifying for disabled people.

But every generation has to strike a new balance between universal and targeted support.

Today, someone in our country is registered as disabled every 3 minutes.

As Australia’s former prime minister argued last month, the case for reform is very simple:

“Disability can affect any of us and therefore it affects all of us.

The existence of disability in our community cannot always be avoided.

But the consequences of disability—isolation, poverty, loss of dignity, stress, hopelessness and fear of the future—can be avoided.”

So I believe it’s time for a profound change in the way we support disabled people.

If the government refuses to propose fundamental change then we will.

Last year, I talked about what some of these rights might look like.

They are what Amartya Sen calls, the “substantive freedoms” – the capabilities – to choose a life that one has reason to value.

I think they are things like:

The right to health;
to be skilled and knowledgeable;
To be able to work if you can;
to have a roof over your head;
to live free from fear of attack;
to have a family;
to be part of a community;
to be able to get around;
to have aspirations for the future.

Labour has a proud record of creating new universal institutions that help civilise the labour market. That makes a reality of these kind of rights.

The National Minimum Wage. Tax credits, soon to become universal credit. Universal occupational pensions.

I think the time has now come for us to explore how we add to this list; to learn the lessons from Australia on universal disability insurance.

Benefits and services that are not just a safety net, but a ladder for disabled people and their carers.

No-one plans to become disabled. No-one plans for a loved one to become disabled.

Life deals the cards it deals.

But if the whole idea of national insurance it meant anything at all, was that we all pay in to insure ourselves against the slings and arrows of life.

It’s a system that lets us support each other.

It’s a system that should be there when we need it.

And right now, it’s not.

Today, we support disabled people by putting them in the middle of a labyrinth and telling them to find their way out.

There are assessments for social care. There are assessments for PiP. There are assessments like the Work Capability Assessment.

Of course we need assessments – but at the moment, everyone asks the same question. And hundreds of thousands of the assessments are wrong. Years are wasted in court, where eventually 40 per cent of appeals are won.

It is a monumental waste of money. £74 million according to evidence provided to the Public Accounts Committee by Disability Rights UK.

We spend £900 million on Atos. We’re about to spend £540 million on Atos and Capita. Heaven knows how much we spend on social care assessments.

I think it’s time to end the labyrinth.

It’s time to bring services and benefits together to support disabled people in a new way.

I think it’s time for us to explore lessons from Australia where their model of 'universal disability insurance' has seen the integration of back to work support, social care, and disability benefits in a single personal budget, which is being pioneered with cross-party support.

The next Labour government won't - couldn't - deliver this over night.
We would not impose solutions on disabled people, we will coproduce our solutions together with disabled people.

The National Health Service wasn't built in a day. It took six years of planning and creation.

The same will be true for a system of universal disability insurance.

Because of this Government’s economic failure, Labour’s inheritance will be hard.

But I think we can build on the work Anne McGuire and I pushed forward in government when we served as ministers together, pioneering individual budgets and we can develop the concept of ‘whole person care’ that Andy Burnham has laid out with such vision.

Today, I want to set out the five principles that should guide our thoughts.

Principle 1: A personal plan for support, including employment

We should bring support for disabled people together as far as we can - including employment.

Rather than separate services treating different bits of a person, we should provide a single service to meet all of a person’s care needs.

This means health and social care, mental health and employment services working together.

As Scope’s Richard Hawkes put it: “Disabled people don’t only fall between the cracks separating the health and social care system – but they must also navigate the welfare system, employment support and housing”.

At the centre of Australia’s National Disability Insurance Scheme is a personal plan for each participant.

Coordinators will work with participants to establish goals and support needs, to develop a personalised plan and to connect people to mainstream services and community supports.

In Britain we could build this out of the legislation in the Care Bill aims to enshrine the principles of economic wellbeing in a wider definition of wellbeing for disabled people by introducing a new requirement on Local Authorities to promote “economic well being” and the “participation in work, education and training” for disabled people.

Principle 2: Local partnerships

Second, to achieve this aim, we should create local partnerships between the DWP, specifically the DWP’s Pensions, Disability & Carers’ Service, Social Care, the NHS, Local Enterprise Partnerships, emerging City Deals (Scope) and disability organisations.

These partnerships could be underpinned by the ‘duty to cooperate’, like for example the children’s trusts we created in 2004.

Children’s trusts transformed the way services worked together to improve the learning, health and happiness of children.

This is what the Care Bill misses out. There is plenty in there about the duties on local authorities. But nothing about the way in which councils, the NHS and the DWP have to work together.

Principle 3: “Tell us once” approach to assessments

Third, a person centred approach would need a radical approach to information sharing.

Everyone agrees that assessments are necessary to make sure people get the help and support they need, but the last thing anyone wants to do is fill out time consuming forms, or take a series of tests unless they are absolutely necessary.

Labour believes it is now time to look again at how we can streamline the process. For example, we will look at introducing assessments which dovetail together to gauge eligibility and need in the quickest and most efficient way possible. This could include assessments for employment, health and social support needs as well as benefit entitlement.

The principle should follow the “Tell Us Once” approach, a cross-government programme pioneered by Labour which allows customers to inform local government of a change in circumstance such as births, deaths and change of addresses only once.

I’m delighted that the former head of Pensions Disability and Carer’s Services Alexis Cleveland has agreed to help us think this through.

Principle 4: Empowering approach to assessments

Fourth assessments should serve to put a team behind disabled people, not a bureaucracy against them.

So Labour will also look at reforming tests so that they identify the help disabled people actually need to achieve economic well-being and independent living, rather than a simple assessment of conditions.

Principle 5: Root and branch review of employment support programmes for disabled people offered though a personal budget

To simplify the employment support system, improve targeting and give disabled people choice over the type of support they receive, we will look at rolling disability employment programmes into one individual budget-based programme.

This could be contracted locally with the budget pooled with other services. This could build on Andy Burnham’s Whole Person Care approach and the Right to Control pilots, and would give individuals greater choice over the support that they most need.

We know the impact work can have for disabled people – and whether or not they live in poverty. Today someone on ESA and DLA will live in poverty – nearly £600 below the poverty line.

Help someone work three hours a week and they will be £400 above the poverty line.

Someone working 30 hours a week will be over £5,000 above the poverty line.

As Ed Miliband’s speech said - if we reform social security in the right way, we free more people to work, lift more people out of poverty, and bring down the benefits bill at the same time.

That’s why I’m determined to make sure if a disabled person can work, we must do anything and everything to help them.

Labour is the party of work.

Last year, from Stephen Hawking's mesmerising introduction at the opening ceremony to Jonnie Peacock's blistering sprint, the Paralympics have blasted into the public mind the extraordinary capability and contribution of Britain's disabled citizens.

The challenge for Britain now - and especially for our government - is to instantly shift focus; from applauding the achievements of our disabled superstars on the world-stage to advancing the ambitions of our disabled citizens in everyday life.

At the Paralympics opening ceremony Stephen Hawking left us with inspirational words that I use with my own kids and school-children in my constituency: “There should be no boundary to human endeavour”.

I want to live in a country where there aren't boundaries to human endeavour.

And that's why I believe the system has got to change.

Tuesday 9 July 2013

Examples of MP letters

I wanted to post these two fantastic examples of people using the email gadget to contact their MP. One is moving and personal but utterly non-confrontational. The other is short and sweet, showing you don't have to take more than a minute or two. I hope it inspires you to take part too.

Either go to this link to write your own letter :

Or here for a template letter :

Dear <MP>

I am emailing you as I strongly believe that disabled people and their carers are suffering unfairly (and surely unintentionally?) under the changes to various subsistence and disability benefits made by this coalition Government. As a disabled person, I currently feel very vulnerable: all that stands between me and complete dependence on the benefit system is one person - my husband, who acts also as my carer - and It feels as if the benefits safety net is being unravelled from all sides.

I beg you to vote 'yes' on 10th July on the motion "That this House believes that the Government should publish a cumulative impact assessment of the changes made by this Government that affect disabled people (to be published by October 2013)."

We hear so often that the Government is satisfied that it is doing the best it can for disabled people and carers - if this is in fact the case, a cumulative impact assessment can only prove them right and calm the fears of voters like me and my family. If it is in fact a well-meant but mistaken belief, don't you think that would be worth finding out before further unintentional harm is done?

Yours sincerely,

Dear <MP>,

Can you confirm that you will be attending tomorrows debate reference
the changes the coalition have made to benefits that affect disabled
people, also to support the vote to demand a Cumulative Impact
Assessment by October 2013 at the latest. It is important that the
effects of the changes are shown and known and any necessary changes
are put into effect

Yours sincerely,

Email Your MP gadget

Thanks to @brianfmoylan there is now a handy email gadget you can use to send a template email to your MP about tomorrow's debate on  cumulative impact assessment.

Just click this link and enter the name of your MP :

Once you click "send email" you will be given a chance to modify the template letter. I strongly recommend you do this as MPs tend not to read otherwise. Also, don't forget to add your name and address as MPs will only answer their own constituents.

Show that we care and we will keep on caring until things change.

Caught out again Mr Hoban?

For years now, campaigners have asked government to look at how ALL the changes to the support and services sick and disabled people rely on will interact with each other.

Tomorrow, there will finally be a debate in the House of Commons, followed by a vote on whether parliament will insist that the government carry out a cumulative impact assessment.

The government have repeatedly refused, claiming that it's just too difficult. Yet, what's this? Mark Hoban, boasting that this government pioneered cumulative impact assessments? In reply to a question just a few days ago (5th July) he said,

Mark Hoban (Fareham, Conservative)

The Government regularly produces analysis of the cumulative impact of all coalition changes, including working-age benefits, on households across the income distribution. This information is published at every Budget and other major fiscal events, in the interests of transparency. The most recent update was published with the spending round 2013 on 26 June.
The publication of cumulative impacts is a coalition initiative and was not produced by the previous Administration.

All coalition changes Mr Hoban? But not disability? Because it's "too difficult"?

What a happy coincidence someone sent me this just in time! Now the government has no reason at all to refuse to carry out the one cumulative impact assessment we've begged them to do! As it's a coalition initiative and everything.

Please, write to your MP before tomorrow and ask them to attend the debate (Wed 10th July after PMQs, vote at 16:00) and to vote in favour of a cumulative impact assessment. 

You can find their email address here :

*Don't forget to add your name and address at the bottom as many MPs won't respond unless they can be sure the message is from a constituent.*

Monday 8 July 2013

The disability stats Government DON'T want you to see

H/T @WTBDavidG and @djmgaffneyW4

As sickness and disability activists finally hope to see IDS and others hauled before the Work and Pensions Committee for misleading statistics, it can sometimes seem as though the whole country has turned away, happy to lap up the nasty lies of a government and media intent on painting us all as "scroungers" and "skivers".

If only the DWP could brainwash a whole country eh? Well it turns out they can't.

Oh so quietly, nearly a week ago, the government snuck out this revealing little survey from the beginning of the year :

In particular, this shiny little nugget on "Government Spending" (Go to tables 20-22)

When asked  "Would you like to see more or less spending than present on disabled people who cannot work? A full 46.7% would like to see government spend MORE or even much more. Just 4.1 % would like to see them spend less. 

As one might expect, amongst sick and disabled people, the figure is even higher, with a whopping 61.4% believing the government should spend more and just 2.2% believing the government should spend less.

And remember, these are, in the government's own words, "disabled people who cannot work" - the group so reviled and attacked by the Daily Mail, Daily Express and DWP ministers themselves.

When it comes to carers, responses are even more emphatic. The survey asks "Would you like to see more or less spending than present on benefits for those who care for someone who is sick or disabled (My italics. Please note they use our language now too!)

A whopping 70.6% would like to see more or much more spending on carers benefits. Just 1.8% would like to see government spend less. 

This chimes with a Prospect poll from last year in which just 11% of respondents supported cuts to disability benefits.

Isn't it odd how this government shout false statistics from the rooftops, claiming that "900,000 chose to drop claims for incapacity benefit rather than face new tougher tests" (When the real figure was just 19,000 and those people found work or got better) yet somehow, it slips their minds to mention that the public do not support the devastation they are inflicting on every area of the lives of sick and disabled people. 

I'd heard rumours about this data. Apparently, backbench Tories, are seriously alarmed by the implications, chiming with mailbags crammed with pleas from their sick and disabled constituents, some even urging the government to drop DLA reform. Fearful for their safe shire seats, already under unprecedented fire over Incapacity Benefit reforms and social care cuts, PIP was surely a "reform" too far? Is it purely coincidence that almost exactly at the time these findings were compiled, government announced that they would not be migrating those with lifetime DLA (Disability Living Allowance) awards to the new PIP benefit until after the 2015 election???

For me, this data shows that no matter how hard politicians try to smear one of the most vulnerable groups in the country, simply to cut support away from millions, human nature is what it is. We, the people simply aren't as cruel or cold hearted as those that attempt to control us from Westminster. 

Again and again, this government totally ignores the views of sick and disabled people. I have never seen politicians so arrogantly refuse to engage or modify their proposals. They slash their way through already desperately challenging lives, using media and fear to attempt to divide and rule.  

This data shows it hasn't worked and they proceed with their devastating agenda at their peril. 

Saturday 6 July 2013

Glastonbury Gas! Gas! Gas! Part 3

Saturday morning and a quick twitch of the kitch camper curtains revealed sun!!! Glorious, glaring, Glastonbury sun, warm and happy, transforming everything to smiles and lazy, glinting opportunity.  Earth baked, not churned, skin caressed, not soaked, kaleidoscope colours vivid, not dull and grey. Everything transformed to the best it can be. A vivid version of psychedelic perfection. Shining just for us, blessing us with delirious warmth. There's no way I would have enjoyed things nearly as much without the sun.

Us Brits all endure long, cruel, winters with a kind of steely resolve, but if you're ill it becomes a battle of survival. Aches duller, pains more intense, fatigue more crushing with every grey, damp day. Harder to get out of bed, then harder to manage any pretence of life if you do. Cold seeps into muscles and bones, amplifying every shooting spasm. We hibernate, us poorly people, our social media family-friends becoming ever more important as days drag by in freezing, draining, unremitting grey.

Like sunflowers, we stretch and smile towards those first rays of summer, becoming stronger, brighter, happier. Take the joy you feel and multiply it by a hundred days of fear and hopeless acceptance.

I took my faithful blankie and stretched out cat-like on the grass, letting the warmth seep into aching bones, tiny denim shorts and silk halter neck allowing the warm breeze to gently search out skin like summer shocks.

Dave made bacon sarnies and fetched tea while I gently roasted. Neighbours emerged from canvas to chat and stretch, mugs of tea and toothbrushes in hand. Overnight, tents had been pitched on every spare inch of our field. A cow tent just inches from our boot, an awning jutting onto our driver's window.

I giggled at hangovers, smug as only one quite accustomed to feeling like death in the mornings can be.

In the green room, John Humphreys held court as journalists do. So familiar, yet strangely distant from us all. Ricky Tomlinson burst in, louder and larger than life. (I resisted the urge to beg him to say "My arse" but it was tough!) We were soon hustled on stage, back to the comfy leather Chesterfields and Humphreys fired the starting gun. Ricky burst into righteous anger, ranting about his treatment as a young builder years ago. He was arrested for striking back then, a larger than life warning of why we have to fight for what few rights we have left. A real life miner from the miners strikes - Ironically named Mr Strike reminded us just what happens when the state crushes the people. Flanked by union officials, PCS (Mark Serwotka) to my right, NUT to my left, I listened with no burning urge to butt in.

Humphreys assured us he was playing "devil's advocate" as he sneered and diminished, though nothing convinced me it was particularly devillish or all that advocatey.

When my turn came, I pointed out that "Union" meant coming together. Whether you paid subs to an official body, or like the Spartacus movement, came together voluntarily to oppose a great injustice, without "Unity" there is no opposition. It is only if we come together to show our will, the strength of our voices, the passion and determination to achieve change that we can ever win. Again, I got resounding applause and with relief, left the rest of the union debates to those firebrand men of my youth.

As Humphreys called thing to a close, I felt the adrenaline and energy of the last 48 hours seep away. I started to shake, I could barely get off the stage. Dave asked me questions but I answered slowly, as though from behind glass. I didn't know the answers, could barely make out the questions. He took me back to the camper, and tucked me into bed, quite accustomed to seeing the shell that is left of me when everyone else has turned away. I slept immediately despite the beats from every stage pumping in time with my blood.

An hour later, Dave woke me with tea and back to myself, we sat in the sun and smoked. As we chatted, I suddenly heard an oh-so-familiar voice, drift across the decades to my today "What a good year for the roooooses...." I squealed? ELVIS COSTELLO???? You didn't tell me he was playing!!! (Always blame the keeper of the Glastonbury app) We rushed into action and Dave attempted to rush my wheelchair through legions of happy bodies towards an icon of iconic proportions. The pyramid stage was busy, already thousands taking their places for the "main event." The Stones would be playing later and no-one was taking any chances. We "Excuse me'd" past languid bodies, beer drenched music-zombies and entwined lovers as "Oliver's Army" made a sea of humanity sing and bounce as one.

The viewing platform was already full. We'd been told that if we were to stand any chance of getting a spot for the Stones, we'd need to be there hours early. Dave is a HUGE Stones fan and no matter what may come, I knew I had to make sure he saw them. It was only 5.30 and they weren't due to finish til nearly midnight. 6 and a half hours on a viewing platform to see a band I don't really like much. But I like Dave. A lot. He's been through through the year from hell, never ever letting me down, managing whatever horrors life threw at us with a quiet care. If I could give him the Stones at Glastonbury, nothing would stop me.

Costello played on and stewards cleared space on the platform for more wheelchairs. The joyous sign language interpreters were there again, even more beautifully abandoned. More and more sick and disabled people arrived, thrilled and breathless with excitement. Stewards asked able bodied carers if they would stand at the sides to make way for more wheelchairs. Like Jesus turning the loaves and fishes into a feast, they somehow kept squeezing us forward, rearranging and cajoling until the platform was as crammed as the fields stretching away endlessly to every side of us.

Primal Scream played next. I thought I didn't like them, remembering wrongly the trancey noise of the Chemical Brothers. As they started to play, I began to think I might survive the 6 hours after all. They rocked, the lead singer slithering with languid Rock Star charisma, banged out tunes from my nineties youth. Spliffs were passed up and down the platform, whiskey flasks were shared, wine was poured from boxes designed to last the night. How very liberating to live, just for a few days in a world where pain relief is allowed, morning noon and night.

Dave fetched me a curry and some churros, sweet with cinnamon sugar. Dear God, when I die, can this be what heaven's like please? I had a sneaky suspicion the same plea was muttered by every individual making up a crowd so large it took your breath away. On distant hillsides, to the left, the right, behind and in front, people surged towards the Pyramid fields in numbers so vast it made me dizzy.

There was a long wait between acts for the Stones to take to the stage. But the sun shone and the atmosphere was all festival abandon and tipsy tolerance. A carer trying to make her way back to the disabled platform with vital meds got stuck in the crowds. In desperation she explained to a group of sunburnt lads who cleared the way like Moses parting the red sea. Shouts of "Let her through" illustrated the unity I'd tried to define just hours before.

It got chillier and more charged as the PA system teased with the promise of Rock Legends. At last, in a blaze of fireworks and light, Jumping Jack Flash blared out and for a moment we were all fans. A playlist so iconic could only unite in a way politics never could. We jigged and sang, as Mick strutted his 70 year old stuff like a preserved gazelle.

The early intensity gave way to musical riffs and lyrical twiddly-wank that lost me a little in the middle. I giggled at private jokes as the old boys had to take rests, cunningly disguised with guest musos and long bridges, but even I had to admit that they still "had it". As the lull took hold I looked out over the seething mass of bodies and suddenly turned cold. THIS is what 170,000 people look like!!! I'd spent the last three years trying to show the UK public what 500,000 people looked like. The number of disabled people who would soon lose everything under Tory "reforms". I felt sick. 4 TIMES as many people would soon be housebound, abandoned by the ignorant ideology of a tiny elite. I tweeted some crowd shots and tried to capture the rage I felt. To harness it and share it with a public as yet unconcerned.

The set drew to a close and "Jumping Jack Flash" brought us all back to why we were there. We were watching the Stones. At Glastonbury. It might be the last big gig they do together. 170,000 people sang and bounced as one.

Trying to leave the fields in a wheelchair was tricky. So many people, all surging in one direction, we were swept along, jostled and pushed from every side. But somehow it didn't matter. High on the drug of 1000 amps, we shuffled patiently towards freedom.

High on life, something convinced me it was a good idea to search out MORE fun. It was hours since I'd eaten and a cheeky little tapas stand offering chorizo stew and cous cous salad beckoned. It seemed like such a good idea at the time. As did the mojitos tempting like harlots from a crowded jazz bar.

We squeezed the last moments of fun from the day as it seeped away from us. Temptation caught up with me and exhausted, sick but triumphant, Dave pushed me back to bed........

Continued tomorrow......