Monday, 25 July 2011

Open Letter to Iain Duncan Smith

The day you get that diagnosis is the day the blood runs cold in your veins. Everything stops. Sound is muffled in your ears, shock runs through you and you know in that moment that nothing will ever be the same again.

Life, that always seemed so ordered and full of potential becomes precious. A gift greater than any you ever appreciated. A privilege, not a right. Your own mortality comes crashing in around you, redefining love and hope and dreams for the future. Everything will change forever in that one horrifying moment.

If the unthinkable happens to one you love, the sense of impotence and fear is worse. You want it to be you. You'd give anything to change things around, to take away all the pain and suffering. You want to take on every invasive test, every painful procedure. You want it to be you laying there, pail and weak, vomiting endless traces of chemo or morphine into a grey carboard tray.

You want to be there. All the time. Every minute of every day. You want to protect the person you love most in the world, to fight for them, to arrange the very best care available. Suddenly work and meetings and focus groups are forgotten - irrelevant even - when contrasted with the battle for life.

Money won't save them. It might make things easier, speed up care or assure access to the most innovative treatments, but the battle is yours and yours alone. Together.

You grieve. Grieve for the carefree days, the easy confidence that good health brings. You grieve for the future, so cruelly and randomly threatened. You grieve for the love and support that always came first. You grieve for your children and the spectre that now hangs above their heads every minute of every day. Youngsters become carers and you grieve for the easy innocence they will never know again.

The luckiest of all might be able to leave work that very moment, rush home and gather up family in strong, caring arms. The luckiest will only have to face a battle with the disease now tearing their family apart, with little thought for other practicalities.

Most are not that lucky.

Most will find that just as their world falls apart, they must still pay the mortgage, still feed the children, still keep working hard. They will suffer endless, unimagined agonies as they try to keep all the balls in the air, desperate to fight side by side with their soul mate but unable to do so.

They might lose a wage. Suddenly and without warning their income may half just as they need it most. They may have no choice but to watch in terror as their modest savings drain away, placing fear of poverty side by side with the fear of death.

Is there anything worse? Could there be anything worse than finding your life turned upside down in every area? Job under threat, home at risk, ambitions and dreams destroyed? As your children's faces become etched with fear, do you tell them Mummy will be OK? Do you keep your financial fears to yourself? Do you take on every burden until the pressure gets too much? Do you try to do the work of 10 men? Superman at work, loving support at the hospital bed, devoted father and capable housekeeper? Can you bear the pressure or do you crack yourself?

There is something worse.

Finding that there is no cure.

Finding that there are no magic chemo bullets to stamp out the darkness, no dazzling operations to cut out the contagion. Treatments are patchy - the doctors tell you if you're lucky they can "manage" your condition, but from this day, life will be about survival. Forever.

The treatments won't stop in a month or a year, but they will still make you vomit or send shooting pains through your skull or make you so sensitive to sunlight that you can no longer go outside. No longer take your children to the park or dig sandcastles in the hazy summer sun. They might make you weak, or angry or depressed. They might cause more symptoms than the disease itself, but they keep you alive and "alive" is all those who love you need. Do anything Mummy, but don't die.

The boss who's been so supportive can't support you forever. 6 months, maybe even a year, but in the end, even the most caring boss will have to draw the line. What do you do? Who will care for your family while you work? Is you child old enough to call an ambulance if she has to? Would she know where the special pills are kept in case Mummy won't wake up? Can you teach her your work number or do you fret and worry through every day, never knowing what you will return home to?

Things won't improve. A grey faced doctor might tell you gently that they will only ever get worse. Functions will fail, dignity will crumble, every previously automatic task will need thought and support. There will be wheelchairs or oxygen tanks or feeding tubes. You will have to learn to change incontinence-bags or give injections or rig up sterile feeds. You will have to find money for a hoist or a  voice recognition system.

One day, Mummy might not be able to answer. She may not be able to walk or leave her bed. Birthday parties will have to move upstairs to a fetid room that smells of the end, but you will smile brittle smiles and put up bunting, pretending that nothing has changed. You will all laugh a little too shrilly, jump just a little too nervously, but you will pretend. When the kids are safely tucked up and your partner is finally sleeping a tortured morphine sleep, you will cry great heartwrenching sobs into a cushion so nobody hears.

There are legions of us Iain. Probably millions.  We fight great battles every day. We find resilience and love we never knew existed. We find pride in the face of indignity, hope in the face of despair. Our relationships are tested every day and every day we have to whisper "but I love them". Every day, that love has to win. Every day, love is all we have left to get us through.

We pretend the poverty doesn't matter and when faced with life or death, it's funny, but it doesn't seem to matter so much. An afternoon in a park at the beginning of spring, watching the children climb steps to great slide-summits, their joyous eyes flashing in the watery sun is almost too much pleasure to bear. The poignancy of knowing it could always be the last time makes the simplest things precious.

We pretend our ambitions and dreams were not important. Strange, but when your ambition becomes surviving to see your children married, it's true, they don't matter so much.

We pretend we're strong, but we only have the strength we all have, buried deep inside us. We just have to dig deep down to find it. Every day. Forever.


This is why you cannot decide, randomly, that after a year, our families must struggle on alone. A year?? Why Time Limit ESA to a year? Why remove all support from these vulnerable families after one year? Why not 6 months or 3 years or a day? It bears no relationship to the real world, it is policy designed by Dali.

This is why you cannot make us wait 6 months for Disability Living Allowance. Why 6 months? By then we may be bankrupt, we may have lost our homes. We may be dead. The state may end up paying much more through picking up the pieces than in supporting us fairly from day one.

This is why more people must qualify for long term support and go into the Support Group of ESA. Because at the moment, you are failing people with lives like mine. People with Parkinson's and Arthritis and MS. Mothers and sons, daughters and fathers. People with lupus, schizophrenia, bowel disease, kidney failure, epilepsy, personality disorder, heart disease, COPD and thousands of less well known conditions that destroy lives. Countless things as devastating as cancer and some more so.

This is not "welfare." Welfare means to fare well. It is the mark of compassion and evolution in a democratic society. It means no-one should be left in absolute desperation. Your policies are causing this total desperation and I'm sure it is not what you want to do or set out to do.

By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.

Please listen. Please think again.


Please do all you can to help me share this today. You can link to it, share it on Facebook, Twitter or Google+. If you have a Conservative MP, then PLEASE can I ask you to send him this today? You can do it in just a few moments here

Thank you. 


  1. Fantastic blog Sue… AS ever, you write brilliantly. I will make sure it gets distributed. x

  2. Great Piece Sue, but I fear this will fall on deaf ears. If you think these people care an inch for us I think you are misguided the only thing they care about is money and power. And I believe this to be true of all the current cabinet, they have no compassion if they did they wouldn't be doing this in the first place. You say the system needs reform, yes maybe but the way we mean reform is not the way they see it.
    Unless we can get the general public on our side which seems almost impossible after all the negative press being spread by this government, I fear all is lost. It's certainly no coincidence that Disability hate crime is on the rise, even the Labour leadership seem to have joined in on bashing the disabled at times, sorry to be so negative but I really can't yet see a way through this........

  3. Another great blog sue and will as Pam pass it on :)

  4. Sue ... It needs to go to Lib Dem and Labour MPs too... in fact it should be obligatory reading for the everybody.

  5. Great blog post - as always you have a way of making the situation hit home.

    I've got a motion trying to change the assessment process and scrap the time limit of ESA which is going forward to the Lib Dem autumn conference to be debated and voted on and I was wondering if it would be alright if I were to borrow your words from this blogpost and use them verbatim to make the case for fixing the glaring problems with the system as it currently stands?

    Before you make up your mind, the text of the motion can be found here:

    I really hope you'll say yes as your words are really powerful and I'm sure they would sway a lot of minds were they to be used in the debate.

  6. Copied to my blog, which I know is read by a few MSPs and one MP.

  7. PS: Well done, Mr Potter!

  8. Sue, you're a very courageous person and I appreciate the very heart felt comments you've expressed in your blog. Like you, I can't buy in to the "blame" culture associated with DLA claimants, and the tone of IDS' comments don't help to create a positive atmosphere for debate. I don't have a problem in principle with targeting benefits when we're in a difficult financial situation as a country, although I don't have a good solution to offer. But I would agree with the point implicit in your posting, that we don't start from a point of discernment, compassion and care for those who suffer from disabilities.

  9. For the benefit of my readers, here's a response I just left George's blog. I'll we'll keep you all informed how things are going.

    "George - Thank you so much for making me aware of this on my blog. I'd love to help and am delighted that you want to use some of my words to make your argument.

    If you'd like to talk things through, I'd be glad to liaise and help in any way I can.

    Please email me on - if you send a phone number, we can talk things through.

    I can't tell you how delighted I am about this and will blog about it later - but I'd love to speak with you first. This is a wonderful thing you're doing and millions of us thank you."

  10. Sean, I do understand your pessimism, but I also think we have to never ever stop fighting, and while the current cabinet (and many other politicians) may lack both compassion and true understanding, sue's writing can, and does, make a difference. You're right that we do need the general public to have a change in attitude and the wider blogs likes Sue's are read the more this is likely to happen, and this is also the way to force government to reconsider policy. So whilst feeing pessimistic is understandable I really hope you can find some hope in the thought that if we don't give up, if we do keep on fighting, eventually, through whatever means, they will have to listen and things will change. To be honest they have to, we cannot have a society existing the way ours is currently headed, it just isn't feasible long term and I do think this will eventually be realised. We just have to keep chipping away at that wall till we get through.

  11. What a fantastic had me reduced to tears.

  12. sent to my Mp - But I know damn well nothing will be done. This govt would prefer to give ATOS 100million pounds to save 1 million. They fail to see the futility of paying a company that are failing them. They fail to see that the doctors who se the patients and know all - Are FREE as the NHS already pay them - This govt are so dense they fail to se what is sitting in front of their faces.

  13. Hi Sue, I normally realy like your blogs and agree with your politics. You paint a very vivid picture and the way we think about illness can dramatically affect our recovery from it. I agree the political picture is hugely important but if someone who had received a diagnosis like you describe, was to read this doom, their ability to manage their positive response to, or fight against the disease may be compromised. For such a person - fighting helps ... consider using whatever the medical profession can give you. Consider advice and make your own mind up. Be determined, choose how you want to do it. Take control, choose your own goals with head and heart. You will win.

  14. I have just spoke to IDS office and she's not impressed and wont be reading this blog and as for IDS himself he's busy and then on holiday so he wont be reading it either
    I knew that would be the case

  15. A friend of mine had his disability/sickness benefit,(dunno what it's called), stopped. He has a brain disorder that causes him to have fits n black out, BUT he only has 2 or 3 a year. He was told he did not have enough attacks to qualify for benefit and should go back to work. He's a roofer.



  17. This comment has been removed by the author.

  18. @Fourbanks has said it all. We are all wasting our time and can look forward to life getting harder and harder.

  19. facing our mortality is that frightening and we do fight to keep as much normality that we can muster...having lived through different and similar this was like Sue was speaking some of my words too and speaking for so many of us who live with debilitating and often life threatening conditions...there are many phases one goes through in despair and courage.

  20. Not a bar of it!

    We are breaking through. The house of cards is toppling around their ears.

    We have more media enquiries than we can deal with for tomorrow and the DWP are now fighting this on about 4 separate fronts.

    Don't get all defeatist on me now guys!!! We're WINNING and I can't wait for the day we get to say "I did something great"

    I can TASTE it.

  21. Can't help feeling we are banging our heads against a brick wall. I have just received a letter from DWP on behalf of my adult offspring - a person who has been on high rate care since the age of 11 - but is now going to have to submit to ATOS for a Limited work Capability Assessment. As the carer and appointee, am I expected to go to work with this person?! No sense in it at all but the government are not going to call a halt to all the reassessments are they?

  22. Sometimes when you struggle in such situations it is very hard to imagine it is also happening to many other people. When I fell sick and ill and developed additional medical problems it has been the system that has made me go through over a year of trying to get treatments and also trying to get enough money to manage on and stay alive with. I spent over a year simply trying to attend hospitals, getting the treatment I need and also having to deal with the DWP and ATOS who through the course of 2 medicals and now I am undergoing the 3rd and after winning one appeal have now caused my illness to become even worse and now in addition to all the other problems I also have diabetes to manage ! I am fed of a system that tells us that it is right to harass the sick and disabled like this just in case one of them is a cheat! Surely they must realise that the process itself is a killer not to mention all the hoops and jumps you have to go through to satisfy a medical services that should not even be placed in charge of people suffering from the common cold!

  23. Well done Sue,I will forward to Karl McCartney or local MP.

  24. Reading this actually made me cry.

  25. Momentum people thats what's happening here let us not forget that. the years Sue and people like her have put in may come to fruition yet.
    Lets not have those negative vibes flying around the blog as they tend to rub off on people.
    Fourbanks IDS wont read it because it saddens him to know the pain he is causing (Guilt)

    Sue your a star no matter what happens and i for one will never give up the fight

  26. [QUOTE]Momentum people thats what's happening here let us not forget that. the years Sue and people like her have put in may come to fruition yet.
    Lets not have those negative vibes flying around the blog as they tend to rub off on people.
    Fourbanks IDS wont read it because it saddens him to know the pain he is causing (Guilt)

    Sue your a star no matter what happens and i for one will never give up the fight[/QUOTE]

    Sue is a star zimmie make no mistake about it but their are others who are working the best they can who read her blog who are struggling to still make sense of it all. IE IDS is not listening period!! And it's no good turning a blind eye to it you wont to phone his office up be my guest
    Contact Details

    House of Commons
    SW1A 0AA

    Tel: 0207 219 1210
    Fax: 0207 219 4867

    You have to understand the way those on the right and the extreme right think before you will make any headway and burying your head in the sand doesn't help
    They have a mindset to do XYZ and that is all they see and dont feel any guilt whatsoever so you are wrong their my friend :)

  27. TLC Hypnotherapy @ 13:26 said...

    May I suggest you read the wonderfully informative 'Smile or Die: How Positive Thinking Fooled America and the World by Barbara Ehrenreich.

    Failing that, any Nature, Lancet or BMJ issue, may be informative and help you to understand there is simply no evidence whatsoever for positive thinking drivel. When you achieve that then you shall truly be ready to appreciate the value of Enlightened thought and modern scientific medicine.

    Should you fail, then perhaps you should confine yourself to sticking your tongue out as you search for a parking space and beligerently refuse to acknowlegde the importance of any Null Hypothesis and robust experimental design in your waffle.

  28. TLC Hypnotherapy - Garbage!

    "Anonymous said...

    @Fourbanks has said it all. We are all wasting our time and can look forward to life getting harder and harder."

    Possibly - there are times when I feel like that. However, we have to keep going - we can't just roll over and play dead.

    As for IDS - hell, he's feeling no pain. For that you need a conscience. For pity's sake, his department is likely to be the source of all the lies and propaganda being dribbled out to the media, about which he MUST know if, indeed, he's not actually responsible for it.

    I'll likely be dead before this mess comes to a conclusion - unless something unforeseen happens - that doesn't mean I stop trying to do everything I can to ensure that the conclusion is the right one. I've been doing it too long to quit now, because unlike what a lot of people think, this mess didn't start with Cameron, though he's ramped it up to an insane level - it started about 4 years ago, with James Purnell and his partner in crime, David Freud. And where's Freud now? In IDS's coterie of benefit Nazis.

  29. I suspect that Duncan Smith and his like don't listen because we don't MAKE them listen. There have been plenty of right wing governments in France, which perhaps didn't want to listen but found themselves obliged to do so, as the country came to a juddering halt when they got out of line and pissed people off.

    Duncan Smith is a public servant, as are his bosses Cameron and Clegg.

    Make then listen. That's what we pay them for. And if they don't and won't, then bring some misery into their lives...and with that lot, it's either inconvenience to them personally or bring the city of London to a stop.

    It can be done. The French do it.

  30. Fourbanks, Thanks for the words of encouragement lol, regarding IDS will take them onboard. I have and never will give up i did not do it at work and i wont do it out of work. Perhaps that is what is wrong we have just given up hope oh well take away my benefits and freedom it dont matter, well it matters to me my wife my daughter and my son cause that's who its going to punish more than myself.

  31. Everyone saying there's no point because IDS won't read this post - maybe not. But if we all write to our MPs and keep writing and keep protesting and keep asking them what they're going to do about it, sooner or later he'll be forced to take action.

    Why? Because if every small back bench MP who doesn't have a vast Whitehall office of resources at their disposal will get sick of having to constantly deal with the people protesting about IDS' plans, and they'll take it out on him.

    But for this to happen everyone needs to write to their MPs, even if you think it won't make a difference, your letter could be the tipping point!

    And to those of you saying the non-spoonies aren't taking up the cause so it's lost... well Sue's persuaded me, and I'm sure I'm not the only one. Most people will get sick one day, or will have a friend or loved one who does - what Sue's posts do are to turn what at first glance seems a remote possibility into a frightening reality.

    Every person who speaks out, on blogs, to their MPs, to the people at the bus stop who ask awkward questions - they are humanising the situation and doing a brilliant job of smashing the propaganda peddled by the Purnell-IDS ideologues. Please don't give up!

  32. If IDS could punch you on the nose and get away with it he would

    Our debt has to be bought under control or we will all be doomed so the government need to act and quick hence we are the sacrificial lamb to the slaughter

    And may in our hour of need the good lord will guide us to do the right thing and to not get mad as madness is not the answer but to take our punishment in the face of adversity on the chin like a man (lol)

  33. Zimmie
    I'm in the same boat as you and if i lose this battle then i and my family will need to move to another country as this one would be to experience for us to continue to live in

    Where can we go i hear you say ? well it would have to be somewhere like India or the Philippines which is much cheaper and would need a lot of luck as well but i will then be able to die in piece and my family would also be at piece and that's important

    My wife is from Africa originally and very strong wherever she lay her hat would be home

  34. I've written a response to this on the Adam Smith Institute blog, btw. Would love to hear your comments:

  35. Fourbanks, Thanks for sharing that sometimes we feel we are alone in our illness and fight. I have thought about moving away from these shores many times maybe its the illness and the dwp who make us feel that way, My mind has become so aware of all the hurtfull ways people view us over the last 3 yrs and it totally blows me away.

  36. It's not easy zimmie as our illness as is often the case presents us just getting up and going
    The conservatives would love that thow and it could be their overall intention and is being tried at this time in Australia by paying people to leave Sidney as it's buckling under the strain

    It will be interesting to see how that policy pans out

    As for myself my mp said i should go and go now while the goings good but it's easier said then done

    I think it's a good debate as people like myself could benefit of getting out of the uk instead of being stuck in the house i could in fact be outdoors in the sunshine at much reduced cost and am sure any conservative minister reading this blog will agree and move this subject forward

  37. Brilliant! Well said, unfortunately it will probably fall on blind eyes, pity though, this unelected government have a lot to answer for.

  38. Could we not ask the Govt to give us x amount of pounds to leave the country never to return, we could all live together on an island somewhere that would please a lot of people

  39. Fourbanks, Its the drugs issue with a lot of us getting it free or a massive reduced rate that keeps us going on a daily basis. I said to my partner about 10yrs ago lets leave i qualified for australia but she did not want to, i asked her again about a year ago and well she just said we should have gone then.

  40. Yes zimmie your spot on i think we have been at that point in our lives i know i have but have failed to act and now must pay the price

  41. [QUOTE]Anonymous said...

    Could we not ask the Govt to give us x amount of pounds to leave the country never to return, we could all live together on an island somewhere that would please a lot of people[/QUOTE]

    The conservatives would love it and you may well find that will be on offer very soon as in that away they can achieve their dream of getting rid of as many sick and disabled people as possible

  42. I'm crying now.

    I'd like to add something though. Try being with someone who has other people looking out through the eyes you love. Other people who hit you with the arms that usually hold you, other people who curse you from lips that usually kiss you. Try not being able to tell them this has happened because you're afraid it'll hurt them so much the other people will come out or they'll feel responsible for the other people's actions because they were committed by their body. Try listening to your lover experiencing the mental trauma of a rape you can't stop because it's happening in their head but it's no less real for that. Try spending 6 hours pinning the body you caress down because it's the only way you can keep them safe from the other people and they can't lift a hand in their own defence.

    Thank you for writing this, thank you for writing my childhood and so far my adulthood from both sides of the coin.

  43. Wow Charley, that must be devastating.

    I'm glad if I can put things into words we all feel, I just wish we had resources and support that meant we could take action, not just find the pretty words.

  44. I have shared to my MP. If you are reading this, then please, please do so too.

  45. This is so sad. Reading it was difficult as the tears were welling up. Staight from the heart hoping that something will make our hard-hearted or heartless leaders listen to us. They too can be sick and disabled one day. Sitting in ivory towers, playing God, taking lives, they too will suffer and fee the pain, someday. Keep writing, keep protesting, keep sharing. like previous empires, this one will tumble down.

  46. Shirley it is sad and i know that more then most and am their biggest critic by far their just very lucky that i am not well enough to leave the house for long but you never know i might surprise them one day and get to London

    The thing i detest about them is that they know the damage being done in playing with our minds keeping people on appeal making them go round and round in circles only to confuse them to such an extent they panic and jump in front of a car or in a recent case like in 9/11 jump from the top of the county mall in crawley to their death in desperation

    Only the very sickest of people would do that to someone else and only the very sickest of minds would have anything to do with the conservative party and their supporters and only Hitler would have stooped so low

  47. Everyone should write to their MP to show their disgust at this company called ATOS, and the DWP. It is obviously a foregone conclusion that a high majority of severely disabled people will fail. The General Medical Council should be making serious investigations into these false ATOS medicals, performed by obviously inept, biased staff.

  48. [QUOTE]Anonymous said...

    Everyone should write to their MP to show their disgust at this company called ATOS, and the DWP. It is obviously a foregone conclusion that a high majority of severely disabled people will fail. The General Medical Council should be making serious investigations into these false ATOS medicals, performed by obviously inept, biased staff.[/QUOTE]

    we have already done that and more but no ones listening

  49. Thank you so much for writing this letter - my thoughts and prayers go with you - I am fighting my own battles and can identify with so much of what you say - be assured that I shall pass this letter on to others -

  50. My son has type 1 insulin dependant diabetes it is a life threatening condition that in time will and already has started to lead to other serious complications 're-active atheritis' 'Colieac & Lactose Intolerance' & 'Background Retinopathy' the food bills are out of control for special dietary needs (Bowel Cancer is one of many complications if a strict diet is not adhered too) Diabetes well the list of complications is endless on that one, Cancer, Renal Failure, Amputation of legs, Blind and so the list goes on! I can no longer work I also have an elderly father with Parkinsons and a heart condition living alone I cannot care for both of them! So much ignorance surrounds Diabetes so many say look at him he's okay why should they get benefits (If only they knew what it's really like living with the condition sleep deprevation never knowing when the next severe hypo is going to occur or, monitioring throughout the night minus sleep when reads are high for fear of Ketoacidosis)having to check every food product for the harmful ingredients the endless prescription runs the mix up's on prescriptions to deal with, the endless medical appointments to attend be it hospital, drs, dental, annual checks on feet, annual bloods I know there will be at least ten appt.s each year before we run into other issues along the way! I was upset the silent killer didn't get a mention in the letter and sadly feel the letter could be treated likewise 'overlooked' I sincerely hope for that is all we carers have in life is 'hope' the Govt will see sense not to punish us even further is it not enough to watch our loved one's fade their health deteriate to be slapped in the face of a Govt that really doesn't 'care' the 'care' factor has gone from many hospitals too the elderly suffer the most as my mother did as she slowly painfully lived her last days with cancer. Left without water after radiotherapy for five hours because she couldn't speak or reach her buzzer, they didn't even bath her when personal hygiene was beyond her as always even the basics are left to us carers and for what? the govt won't even give us help to retrain or, seek work to give us a break they won't even send in a carer to relieve carers for breaks they allow pensioners and children to become main carers without a second thought what a disappointment to mankind!