Monday 20 February 2012

What WILL I do?

I'm going up to hospital today. They might keep me in.

The "might" part of that sentence is that they will almost certainly want to and I will do my best to wriggle out of it.

Oh, I'm not well. No doubt about that. I'm less unwell than my last admission, but unwell enough not to be able to get through a day. I can't look after my own children, my Mother-In-Law has been here for about a month doing school runs and making the dinner. She can't stay much longer - her own life urgently needs attention.

It's not the crohn's. Nope, this time it's some unspecified immune oddness. I've lost a shocking amount of weight, I'm weak and frail, I'm getting constant low grade fevers, I've had a cough since May and every few weeks it flares into some kind of full blown infection/flu.

My local hospital weren't interested. At all. Too complicated. Sent me home muttering something about it all being something for my consultant to look into (My consultant is 130 miles away in Cambridge and my local hospital still use carrier pigeon.) They didn't even recognise my chemo-shots until I told them the generic name.

That was 3 weeks ago. 3 more weeks of shuffling around the house, coughing, trying not to pass out when anyone's looking, aching and paining, basically cluttering up the place like a great heap of patheticness.

So the only option is for Cambridge to take me as an in patient and run all of the tests my local hospital should be running but haven't heard of yet. (**See why I think NHS localism is a really, really, bad idea?)

So why on earth wouldn't I want to go into hospital? Why wouldn't I want to find out what's wrong and get it treated?

Oh, you know, it's that little thing called "life" again.

Who will look after my children? While I brew a nice few PTSD attacks in a hospital bed 130 miles away, who will do the school run? Wipe away tears? Pack lunches and do cuddles? My 3 year old broke his arm pretty horrifically on Wednesday and is still getting used to the cast and the pain - who will help him up when he get's stuck on his back? Or make sure he has his medicine in the nice Toy Story cup that means he takes it? Seriously? Who?

How will I afford it? Dave will have to visit (only at weekends though) and that costs £60 a time in petrol, £70 for overnight stays, £15 or so in hospital parking and £70 here and there every time he has to take a day off for compassionate leave.

How will Dave manage? Will his boss understand? Again? Or will this be the time he loses his job? Will he make it through yet another bout of stress and worry or will he have another breakdown?

The only answer anyone has ever managed is "Well, you have to. Your health is at stake."

Hospital stays trump everything. Getting "better" always comes first. If I object, I get the "look" - "concern mixed with frustration mixed with impatience. It's so easy when it isn't you. It's so easy to say "something will come up" about money. It's so easy to say "Oh, people will all pitch in with the kids" (They won't and don't) It takes just seconds to say "You'll be fine" (I won't and it will show as I crumble daily, trapped in a Kafkaesque in-patient system I have come to loathe)

But actually what do I do? There is no nice number to ring, no-one I can appeal to. Social Services would just laugh, I'm so far away from needing a care package according my local authority, I might as well be an Olympian. I got refused DLA, which would at least have paid for some petrol and childcare. Soon, I will lose my ESA too.

Dave and I have been in this situation many times. Our parent's are getting older and less able to step in, take over, run a family popping with the boundless energy of two small boys. What do you do? There is nothing. I'm no longer classified as "disabled" I'm no longer classified as "unwell" I never was classified as in need of care or local support.

Which is odd, because I know that the next 4 or 5 weeks will cost us thousands of pounds. Money we don't have. If there is no-one to pick my child up, he just has to stay at nursery - and we have to pay for it. If I can't walk to the school gate, we just have to get a taxi. When I'm in hospital I just have to buy extra food - or I'll lose more weight and get more ill. You can die if you lose too much weight you know Mr Dunky-Smith. The petrol money will have to come from somewhere, but where? Who will pay for the B&Bs?

It's not just about the money though. Who will look after my children? Do the school runs? Get the shopping in and cook dinner? Who?

"It'll all work out" is no answer at all.


  1. Love, you can and should be getting a care plan. I know they're saying you don't need one. They always say that. I had to petition both Disabled Parents Network and also wrote to the Ombudsman before social services took me seriously, but they eventually did. And it's probably time you wrote a complaint, then write to your ombudsman and get a number to your complaint, then let Social Services know the number. They WILL then suddenly have an "oshi-!" moment.

    What happened with the funding? Time to open it up again? This year my resolution is giving when I have it to people who don't. I'm all right for money at the moment, even off ill, as I have a six month grace period.

    I know what it's like; it's me, me and me when it comes to caring for child and myself. I know that people look all deer-in-headlights when I describe this and they always think there's some alternative somewhere (there isn't). They always seem to think family will be around (I don't have any in this country, and son's father charges me money to watch his own son. Seriously). And ergo I shan't see you scared about transport costs, at least that can be covered.

    I pushed and pushed and pushed last year through my own auto-immune nightmare before I got a diagnosis because, well, that's what you do as a mum. However the way it was put to me by a consultant after the third hospitalisation (and me whinging about being in hospital) was that I could either deal with the worry of not being home or I could face up to the fact that my son might be visiting my gravesite if I didn't get on top of the health issue. That sort of made the worry of whether people know what my son wanted for breakfast the most and what he meant by "dip-dip" if I didn't tell them pale a bit in comparison.

    So, here's a bit to try and stretch a little for petrol and takeaways if needed. You're not asking, I know. But that doesn't mean I won't give anyway. It won't help the anxiety because, well, you're a mum, and we do that, but I'll send you links and have Doc make silly Elvis cats and I'll keep you laughing if I can.

    Because I'm a mum. And because I know. I know.

  2. Sue, you have brought me to tears this morning. I'm so sorry that you are in need of much deserved and needed help and should not be having to worry about anything but getting yourself well. If we lived close I would be happy to help you in anyway I could. I know it is easier said than done, but do try to focus on you. Our thoughts and prayers are with you and we will continue to fight on in the name of #spartacus.

  3. People say 'it will all work out' when there really isn't anything else to say.I have a little understanding of your position Sue because I have been through it myself in a much smaller way than you. Those that slip through the net often see theirs and their families lives in tatters, it is appalling that you have to live this way.

    I hope and pray that you reap some rewards for all the good you have done for others and that justice will be done in your fight and that by some miracle (which I will pray for) things will turn out right for you and your family.

    Bless you Sue.

  4. Suey what can I say? Nothing I can do for you will help your situation. Knowing I am appalled and so so saddened by your predicament and wish with all my heart I could make it better for you will not improve your life.
    But I hope that as a fellow spoonie you will welcome a cyber hug. And know that people are hurting with you.
    I am appalled by the lack of help and support you are getting under this harsh, in humane and cruel government who promised to protect the sick.
    Just know you are not alone and I would donate my last penny to help you and protect you. I would if you asked drop everything and give my last spoon to you.
    Because if you can't get help with your illness then there is no hope for any of us.

    We are Spartacus and we will fight fight fight !

  5. ❤♫❤♫❤.•*¨`*•..¸♥☼♥¸.•*¨`*•.♫❤♫❤♫❤
    It is to Madame Justice that I dedicate this concerto, in honour of the holiday she seems to have taken from these parts, and in recognition of the impostor that stands in her stead.
    Tchaikovsky - 1812 Overture (Finale)

  6. You have a right to be angry - and, if that gives you enough energy, then I hope you can fight for help. Copy this post - to your MP, to Dunky-Smith, to Social Services, to your GP, to the complaints department at your local hospital. to the people assessing your disability.

    You need help - and you have a right to it.

  7. Im so sorry to hear all this..I dont have any magic answers.. and no the "itll all comeout in the wash " type answers are just rubbish because we all know sometimes it doesnt and what happens then..

    I just want you to know that people do care , ( not that that helps practically ). I hope you do find the strength to ask social services to do a reassessment perhaps while MIL is still staying so you have another voice to say what you need.

    hugs .. Jo AKA Myrtlemaid

  8. I echo all that has been said...I had to use taxi's when Mum was in hospital(she was only 7 miles away)and without me no visitors(I stayed on the hospital grounds between visits to avoid extra travel)and even that because of the length of stay cost £900. Money we did not really have but had to find.

    So I understand perfectly the situation.

    When Mum had to have radiotherapy recently approx 20+ miles away without the ambulance travel service that was going to work out at close on £600.

    Without unemployment and sick, elderly, parents, disabled being around to try and pick up all those jobs that have to be done daily to keep society going whilst those who have work do what they do. Things don't get done by themselves.

    So again I question how many of those who are at home during the daytime and classed by some as to being lazy and are doing nothing.

    Our downstairs is virtually unused and the curtains drawn so some who do not know our circumstances probably think that we are sleeping, I am caring for my Mum who is seriously ill.

    Its so easy to stereotype or jump to conclusions. I haear so often the line about people laid in bed whilst they are going out to work. How do they know what is going on behind closed doors.

    You will get better when the time is right and your body is ready to Sue but I will still wish you well and hope that your stay is not as long as feared.

    I fear that as I care for Mum and have to do tasks they'll say that proves that you are fit but I pay for it and am often exhausted afterwards and if I don't who else is going to do it?

    I don't want Mum to go into a home...and equally though not well off we have to pay for any care we get now or any increase in the future.

    So expect if youy manage to get a care package(and often you then find that you have to fit in with the criteria they think you should follow and you often feel that your life is not your own anymore.

    You'll also probably have problems paying for it.

    Friends and family can only do so much.

    My problems seem smaller than yours and yet I do emphisise.

  9. I am so appalled at this situation. I am also so sad because I know that the main reason you are in this mess is because of me and people like me. You had the strength in you to get up every day and fight, when we didn't. And now you pay the price and you shouldn't have to. You are not alone in your fears, even though there is nothing physical I can do to help, I think you would be surprised if you asked for financial help from the Sparticii. We may not be able to give much, but every pound counts when there are hundreds of them.

    I went and had a look at the fighting fund and saw someone had donated there today, but I don't know whether you want to set up another page just for you. I don't want a donation to disappear into the costs for fighting against WRB, I want a donation to go directly to you and the costs that you have incurred by running yourself into the ground. Please set something up so we can help you. We really want to, even if it is only a few pounds each.

    You have fought selflessly for us, let us help you.

  10. Sue, if I lived near you I would do the school runs in a heart beat and anything else I could do to help out. I realise that's little comfort seeing as I can't do those things but my goodness I can't think of anyone else who needs the help so much!

    I'm disgraced at the fact you don't qualify for DLA - that is ridiculous. 'Protecting the vulnerable' my arse! Your children, husband and yourself are totally vulnerable.

    I've been told to go into hospital many times and more often than not I've chosen not to go because the logistics were hard to work out. There was one time I chose not to go where I was very ill, it's the only time I regret not going, despite me making a great recovery - I think my decision was stupid because I was very ill. But again, it was the logistics of life and like yourself I was stuck for childcare.

    We've moved to be closer to our in-laws and other family friends so that should anything happen we can just dart off to the hospital. Even at that it would take time to cover the whole period of a hospital stay. And there would be the cost of a taxi to get to hospital - might come to £40/50 that has to come out of my pocket and the money side of things is exactly why I'm hesitant to head to hospital. My problems are pretty small in comparison to yours, naturally, but these logistical and money problems do seem to be universal.

  11. First time I was turned down for dla I wrote them an angry letter from my hospital bed a little while after time to appeal was up, explaining how the report was not right and how an ambulance had been called for reasons they said I had no problems with. I did it mainly to vent but it was taken as an appeal and I won the tribunal. It felt cathartic just to put them straight and was me taking a bit of my power back, it is never too late to do that....big hugs lovely xxx

  12. OK folks is the time for us to help sue here so its either give to the fund already on here and let her and the family use that or we set up another fund and get sue to link it on here and give direct to that or if anyone else has an idea lets hear it now.
    I did give to the fund on here and i will do again and again when i have more BUT this is more important at the moment so lets help sue and the family eh.....anyone live near here or can help in other ways..There must be someom up in or near cambridge who can help there..Come on folks.
    I can put 20 or 30 quid in today and a bit more next week.So thats a start....i am lucky i have people near to me who would and have helped me when i needed it so yeah lucky very lucky...time to all pull together for someone who has helped us more than we know..

    1. Please let me know where I can contribute , I'll give what I can and ask family too. Sue has done so much to help our community , she does not deserve this. I don't have paypal, but can contribute in any other way.

    2. Hi, Let me know as well where I can donate towards Sue and the Family. I too cannot give a lot but what I have I will share.

      Hope you feel a bit better soon Sue.


    3. me too, Sue has done so much for us, i want to donate to help her & her family specifically

  13. I think you are at a stage where you need to ask the sparticii for help. I can imagine that will feel horrible, but ultimately you've been working long hours for all of us for so long and you deserve anything anyone can give you; to pay for childcare and carers. People will be more than happy to give. I for one would feel mortified if you went into debt having given so much to our community. We owe you everything, Sue.

    I send you best wishes and hope they can get on top of things quickly in hospital. As another person who has had P.T.S.D because of hospitals and doctors, I sympathise massively.

  14. Just had a look at the total in the fund on here and its up to nearly double what we first intended assuming that i dont know say half of that was used for the report and various expenses associated witht that that leaves say 40% so may point is here..why dont we just tell sue...well we will have to INSIST knowing her reluctance...that she takes it and uses that for now and if we need to put more in we can do.Even if we put a quid a week in if all of us do that then it soon gets back up to a good amount.IT is a fighting fund and she is fighting so ......If that aint what people want to do then ok lets have that other fund set up and linked today.....

    1. oops i meant of course say 50 or 60% was used and it leaves 40%.....but of course it could be less that doesnt matter as we know that report cost a lot to produce and i for one wouldnt care if it all of what was raised was used but before anyone pulls me up on me maths my point stands...lets help sue..

    2. I agree. I would also donate. Might not be much. Maybe a fiver now and another in a couple of weeks. But if all Sparticii did, or even half of them, that would help. And we want to help. The comments here prove it. Sue you are such a magnificent person, a light in the darkness for so many of us. Allow us the priveledge of helping out. xxx

  15. Sue, I feel so sad for your situation. I don't understand why you are not getting DLA and your ESA is being stopped. My husband gets the lower rate DLA and he has just been approved for the Support component of the ESA. He is ill, and he needs it, but he is not as ill as you. I just don't understand what those people are thinking. How can they not see your needs?

    This is probably a daft question, given your amazing activism, but have you asked your local MP for help? Even if they are the enemy, they have a duty to help ALL constituents, no matter who they voted for.

    I wish I lived closer so that I could help.

    1. Yep so do i...i think we all do but a few quid each from all of us would at least solve some of the immediate costs for the family or whatever..and i would help any of the team if they needed it(kaliya and the others)and ok to be blunt..lets put our money where or mouths are...doesnt have to be a one famous i wont go in as they are workfare slavers...every little helps..

  16. Oh Guys *very heavy sigh*

    I do love you all for your offers of help, but I'm just one person, thousands are in this situation. YOU lot are no better off than me.

    The fund is down to about £700 quid I think. Most went on transport, food, phone bills, etc during the media frenzy. I was keeping that bit in the fund for anything that might come up from here.

    I write about these things because it's a diary - I have to. It's to show people just how badly the system ALREADY fails us.

    I will be writing from hospital and if there's ANY way out of an in-patient stay that means I can still get treated, I'll try to find it with lovely Doc today. I'll still be campaigning - probably more as I'll only have a laptop and a bed and long boring days to fill.

    We always get through it somehow and I spose in the end there'll be no more credit and we'll just have to go bankrupt - might even be a relief in some ways.

    1. Sue, said from a loving place, there's always someone worse off. This does not mean that someone should turn down help, which we are offering. The English stiff-upper-lip thing is prevalent and does a credit, but it doesn't actually help if you're in a bind.

      Ergo, take the funding and use it. Please.

    2. sue lots of love and empathy to you. in alot of communities ie the muslim community it is normal to cook meals for families whoe mum is ill and take them round. i would be delighted to do an online shop if you are hospitalised. not tesco though! Educational welfare officers are great at getting kids to school on time too. Certainly in my case. Take care. I'm 'wasting' a fortune on taxis too at the moment. It sucks.

    3. The fund link, up in the corner is very deciving then, cos it looks like theres over £6000.

      Is there a way to correct that at all?

      Double Karma.

  17. Ok not 40% left then but thats ok things are always more expensive than you first think but for me you should take the 700 whats left and i for one will put some more in today as i said If i say ...want to send you some direct how would i do that then.....i am off to the dentist in ten minutes..and speaking of pulling teeth..let me give you something 20 or 30 quid or so....

  18. i agree sarcboy...Sue has done alot for us,at the cost of her we can offer her a small token of our gratitude...hope your soon feeling a bit better Sue.

  19. I'm in debt but can manage a few pounds regularly . What you need at the moment is someone who can share the load of campaigning. Is there any way you can ask for help from any other organisations who should be fighting with us? I know they haven't been a lot of help so far. You mustn't beat yourself up as you've done so much for all of us. Look after yourself and look after your son and I hope in a couple of months' time his bad memories ofbthe accident will fade. When does he have the pins out? Sending love as usual.

  20. Sue, please tell us that you're happy for us to put extra money into the research fund to support you and your family while you're unwell. As Stitched Together says, these are costs incurred because of the Spartacus campaign and research - it's not fair that you should have to bear them alone. Your post does achieve its stated purpose, but we want to help too.

  21. Everybody said some really lovely stuff, I aint gunna.

    NOPE, I is gunna grab ya foot and tiggle it, and when yr face is all crimson, and yr ribs feel like they're gunna burst, I'll set my slurpy puppy on ya.


    chucking magic sparkly fairy dust at ya.

  22. keep in contact with The Baroness Campbell of Surbiton DBE i keep in touch with her and she always replies to my emails with care as i believe she does ?

  23. she is disabled as i am ill so were both in the same boat in needing care

  24. This is so, so terribly wrong.

    You should be getting DLA, you should be getting a care package and you should be in the ESA support group. You should have friends who can pith in with the kids, your husband shouldn't have to worry about being fired for taking compassionate leave and you should be able to get the tests you needed done at your local hospital.

  25. I know it would only be a small help Sue, but if Dave needs somewhere to stay I can offer him a bed for an overnight stay, I am about 15 mins drive from Cambridge.

  26. Sue, without you (and others) we would not be in the position we are now. You have fought selflessly for us all and I also DEMAND that you take the remaining fund to help with your associated family and hospital costs. There would be no fund without you and the Spartacus group and we all gratefully appreciate the work you have done for us all tirelessly and without thought for your own health! We want you to continue to be our voice and need you to be as well as possible.

    I doubt anyone would disagree with you using these funds and what has been raised before can be raised again I'm sure. More and more people are hearing about the group and are joining; why not ask £1 to join? I for one did not even know about this fund, I had seen discussions on Facebook about possibly starting one, so maybe this too could be highlighted on the Facebook page and I am sure the funds will grow.

    I totally understand your position, I have four children and have been taken into hospital a couple of times yet nobody came forward to help. My children are older (teenagers) but one is still at school and I still have concerns regardless of their age; when you're a mum you're a mum lol, non stop worry.

    I wish I had a magic wand to make things right for you and although this does not help your situation using the fund will. Please now take back, for your own healths sake. I will be thinking of you and your family. The very best of wishes Sue, I hope all goes well x

  27. Sue, I assume they are sending you to Addenbrookes? My parents live a 20min car ride away and have several spare rooms. My mum would also look after your children while your husband visits you, and my dad would take him for a pint to help him unwind. Seriously, if your family would like to stay over the weekend it is no problem - I mean that. I am relatively new to the whole chronic illness thing but in that time I have never ceased to marvel at the hard work you and the others have done; my mum and I talk about it regularly even though we are lucky not to have to worry financially. Contact me at xxx

    1. Thank you minihippy

      You seem to have a better offer than I could make Sue
      Meaning the children could come with him saving childcare costs as well and maybe even be able to visit their mum.

      God bless you xxx

    2. Wonderful to see someone offer this. Well done you generous people :)

    3. Minihippy, you are wonderful! It's so fantastic to see people like you exist in this world! Much love to you and your wonderful parents xxxxxxx

  28. Blimey minihippy family you sound a lovely set of folks.Smashing........

  29. ' They wont and dont' brought me to tears today, that sounds so familiar, like you, some days it feels like slowly drowning... You have done so much for us I wish there was something tangible I could do to help from down here in Cornwall, Other than offer my deepest thanks for all that you have done and are doing... Dxxx

  30. Sue, so very, very sorry to read this description of the hell you and your family are now going through. And yes, I'm sorry for every one of us who is currently struggling through these hard times.

    Like others have said, I would be more than happy for you to use whatever is left of the fund for your needs and/or contribute to a fund directly set up for the purpose of supporting you and your family at this difficult time.

    I use lots of software which makes life easier in little ways, and the authors ask for donations. I'm always happy to give a little to thank them for their time. How much more this applies to your situation given what you have done on behalf of the ill and disabled people of Britain.

    It's hard to receive help sometimes, I know, but by allowing people the opportunity to do what they can (in this case perhaps donating a small amount of cash), you are enabling us to give something back to you.

    Kind regards and virtual hugs.

  31. (Adrian Wait - "We're Off the Beach...")

    Dear Sue, Genuine Offer, but how?

    "I do love you all for your offers of help, but I'm just one person, thousands are in this situation. YOU lot are no better off than me."

    Sue, you have revived hope for so many people - your courage and steadfast commitment to justice has enabled so many of us to 'hold-on' when all hope seemed to be lost. This gift of hope, and encouragement is a high price for those who step into the fray to be a voice for the voiceless.
    I am aware in times of struggle of the actual cost physical, spiritual, and financial cost of keeping hope alive, for those around us when we ourselves are running on empty, sustained only my a heart for justice and anger at injustice.

    We are all in the same boat - but together we are becoming a convoy of hope. This is through the steel like determination of people like yourself, and so many people with a heartfelt commitment to each other.

    Please, is it possible for me to offer what monies I can to go towards supporting YOU and your family at this time? Is it possible to forward you a token of my deeply held admiration and genuine concern for you? Please may I help you at this time - I could never repay you for the gift of hope you have revitalised in me and so many others.

    Is there some way (secure way) I can help you as soon as I possibly can, please enable me to share what I can with you at this time. I don't know which way I could ensure a secure 'gift' to you personally, and sooner rather than later.

    Sincerely yours,

    Adrian Wait.

  32. I also was completely moved by your plight Sue, with nothing more to add than has already been said. If you choose to access the money left in the fund as has already been requested you do so, please let everyone know and am sure we will help top it back up. Alternatively, if you set up a seperate fund for your expenses, again link it for us all in your blog...and our donations will go there instead. I have £50 ready to send you, the moment you can tell us where to send it that you can use it..:-) PLEASE LET US HELP BY CHIPPING IN SUE>>>WE ALL OWE YOU THIS DEBT YOUR INCUURRING WITH OUR HEARTFELT GRATITUDE!!

  33. there is another blogger I follow who faced losing benefits and someone set up a paypal account webpage and facebook page so people who cared to and were able could donate £5.00.
    I dont remember more than that - but I would GLADLY give sue a fiver for the work she has done on my behalf
    kind regards

  34. Anyone on Twitter who can tweet Ed Milliband? He is making a big deal out of opposing the Health Bill but said nothing about the Welfare Reform Bill.

    We know he has spoken to Kaliya, so we know he knows Sue.
    He knows what is happening to the disabled but he stays silent.

    The tide is turning and there could be an election sooner than he thinks. He better understand he needs our votes to win and he will only get them if he tells the public what the Welfare Reform Bill means and that Labour will oppose it.

  35. Sue .. I'm in Glasgow and completely skint thanks to Cameron and Co. .. but if I could help I surely would.

    You woman, are a shining light to the rest of us.

    If I can possibly help in any way that I can afford to, please let me know.

    You are an inspiration. I suffer from schizo affective dusorder and have been close to the edge on a number of occasions and pulled myself back after reading of you and your struggle.

    Keep the Faith.

    Keep the fight.

    Keep your resolve.

    You mean so much to the rest of us .. but be well and don't push yourself too hard or too far. I'd rather take a hit than see you falter through exhaustion.

    We love you .. we really do!!!

  36. Do they not realise that the Health Bill and Welfare Bill go hand in hand? Of course they do but prefer to ignore the fact.

    Milliband could have taken an alternative stance and quoted statistics and truth to show what we have read and heard in the media is wrong.

    Thus both supporting us and the genuine unemployed who are mostly honest and not lazy and not living a so called "Easy" life and also tried to tell those who have been taken in that what they believe is wrong.

    He could also have shown that even those ok today may find the picture so different in the future for them and their family and friends should they fall on hard times.

    As some of the ideas and schemes were introduced by the Government he was part of, he could have also taken a different route and said he would reverse some of what his Government did.

    Does anyone think that he will? I know that I don't!

    They are frightened that they'll lose an election when they could gain many more votes from the disabled, elderly, unemployed, disadvantaged etc...

    1. I'm not down with labour, seeing what Brown has done to special schools for autism before the Coalition got in. I am even less thrilled in voting for a party that is only interested in chasing votes rather than actually standing by policies it believes in. Labour isn't interested...and Miliband has already said he supports the cuts.

      Going Green, personally - we need a complete rethink on economy that isn't based around making 1% richer than they'll ever be able to spend in their lifetimes; capitalism is collapsing world wide, now, and change is in the air.

      But I digress- this is about getting some support for Sue, and I'm glad to see everyone really pulling together on this. Awesome shoutouts to everyone!

  37. Oh, Sue so many people so many problems and worries and it is not right. Only people who in situation understand the whole picture. I have probs but different of course and what I do when in specialist hospital when well enough to travel home the sister orders me a taxi which is provided free through nhs also have nt needed to do it maybe ask for ambulance service if need be, then they can prepare for your return. Please don t do this if not well enough but it is an option in my area. NHS do provide transport in difficult circumstances . Always a big thank you, take care and I send a hug. X

  38. Adrian Wait

    Dear Sue,
    My email is now with you - re:Diary-blog subscription - please feel free to email me to enable me to support you & yours at this time (see above "genuine offer")

    Yours faithfully


  39. Sue,

    We live in Cambridge and would very gladly put Dave up if you're in hospital here and her wants to visit you. Depending on our son's movements -- it's his car and he needs it for work -- we might also be able to run him to and from the hospital too and save the car park fees.

    - nick

  40. on the funding question, I agree with all the others who've said we'll try and contribute. Just say if any other arrangement's needed than the current fighting fund set-up. Sue, this is appalling, both on your own personal level and how it impacts on your family, but also because it illustrates EXACTLY the huge human impact of the wretched WRB. Thousands of real people, thousands of real lives. Shame, shame on all those MP's and Lords who support this legislation.

    In 1999, the following was said:

    "I am proud that we stand today on our previous record, which is that the disabled, far from being a soft target and an easy touch for the government, are a group of vulnerable people who should be the last people to be disadvantaged when changes are made to our welfare and benefits system"....
    Quentin Davis MP, Conservative spokesman for social security, when Labour were trying to make disability benefit cuts, and were opposed by the Tories and LibDems! (quoted by Sonia Poulson in her brilliant article in Mail Online 1/2/12).

    Words are so inadequate and don't help your practical situation,Sue, but may I say take care, rest, and enormous thanks and good wishes.

  41. I do hope all goes well. I hate going to hospital even when I'm feeling well as they always want to prod and poke at me anyhow. I'm also really surprised to read here that for the media interviews you did they didn't send a car or taxi for you as they usually do. It seems jolly unfair to me.

    1. I took part in a documentary on the BBC a few years back. You don't get anything from them for doing it. Not at that time anyway.

  42. Sue, whereabouts do you live? I live near Croydon, and if I can help with transport or looking after kids etc, get in touch, please. I mean it. Inbox me on FB if you want, or get your hubby to do it, ok?

    You would accept the help if it were from a care worker, or paid for by public services, so please do not hesitate in accepting the offers from help from individuals who want to give back a little of the help you have given by the bucketful over the last few months.


  43. Sue hope you don't mind I sent your blog to Ed Miliband and asked him to highlight the plight of everyone facing your situation. You have brought us all together and given us a voice. Now let us support you and your family. We are really "all in this together" and we want to help.

  44. Dear Sue,
    Your blogs have been an inspiration to me, and I'm sure to countless others. Please accept my heartfelt best wishes and prayers.

  45. Get better soon Sue!!!!!!


    By the way this Guardian article states those on Employment and Support Allowance can not be asked to go on the scheme.

    1. Thing is, everyone else was talking about Mandatory Work Activity, NOT the Work Experience Programme (which is not mandatory and is for 16-24 year olds).

      The other Work Programme is for 25 year olds+ and IS Mandatory, complete with sanctions if you don't turn up to your shelf stacking in Tesco's.

      Mr Duncan Smith is being sneaky by talking about a -completely- different scheme to the one where disabled people will be Forced to Work or have their benefits docked.

  46. Dear Sue,

    Does your childrens' school know what you are going through? If they have a support worker attached that might provide a fast-track route to a care package.

    I have similar levels of incapacity as you, due to a 20 year history of severe ME/CFS, children aged 3 and 6, but no partner as their dad couldn't take the kind of stresses and strains you describe.

    In desperation during a relapse recently I wrote to my childrens' school about the struggle I was having just to get them to school.

    The response has been amazing. Teaching staff on hand to do school runs when I need, and a support worker attached to the school employed by org. called SHS who wants to fight for a care package for me when I gave up all hope of that years ago.

    Just thought it was worth a mention. My heart really goes out to you. And every day I want to thank you for your amazing work and your courage.

  47. Dear Sue,

    I've never blogged before, but I wish to share a poem that I wrote. I wrote this poem the last time I went through the benefits system and the process dealing with Atos. It would be fair to say that it was "an extremely challenging scenario" that gave rise to immense anxieties and further ill-health and family stresses. Then there’s the aftermath and fallout where you enter a prolonged and lethargic period of recovery from the lengthy process, to work ever so hard to try and reach the base-line so difficult to achieve and balance that all sick and disabled people try to meet.

    Anyway… I’m waffling (maybe I will make a blogger yet!)

    I wrote this poem never knowing that someone like you would step forth from the shadows of fear and speak out for the voiceless disabled and the sick, especially coming from a vulnerable position like your own. The feat and courage you portray is nothing short of remarkable. I cried when I read your blog – please accept my warm and kind wishes. I appreciate your vulnerability and your humble efforts.

    Can you tell me – where would I send a cheque to?

    Yours truly

    “Social Uncertainty”

    What is this uncertainty that I have to watch unfolding?
    And why does this faith that I feel keep arising?
    What is this hope that keeps me from crying?
    And does this life really, keep me from dying?

    As sure as the hurt of limitation and pain
    That keeps me in bondage to this life’s ego insane
    The system once built to catch such as I
    Can bring pressure and obstacles built high to the sky

    Oh why is there no one to fight for this cause?
    Of importance to many, to survive if not lost
    It kicks holes in security and stability for we
    Leaving us vulnerable, in isolation, all alone and at sea

    If it were not for a refuge, and a foundation
    To live out these days, without too much trepidation
    I am tempted to surely walk out on this delusion
    And exit this world and all its illusion

    Instantly I can hear our modern world cry
    It can’t be that bad
    Can It?

  48. Get well soon Sue, huge thanks for all that you have done.

    Can we have a P.O. box address or other snail mail address to send you money?

    I don't trust the internet.

  49. I've lost the comment now about media paying for interviews etc. so I'll reply here.

    I don't get paid for doing any, but they do cover travel expenses and if appropriate, a hotel overnight.

    I am a class A blagger - Kali is A++ - and wherever humanly possible I blagged expenses or a free lunch or snack.

    I DON'T get paid any expenses however from politicians, peers, organisations etc. Firstly, they never offered, secondly, I wouldn't take it if they did.

    I've been to London to welfare conferences, political conferences, to speak at Occupy, to go to parliament or to meet with people, loads of times.

    It's amazing how those things add up.

    Anyway, I'll try to outline it later in the post I've promised xx

    1. Sue I think the the vast majority of us understand how much all this campaigning the report etc, costs and also all the work costs your health. I do urge you to take up the offer of help you can get from people who are near enough to you to do that. And donations that may help. Your campaigning is tireless and your positivity and hope has kept me going many a time when ive felt overwhelmed and extremely low by all the changes. People want to be able to help and support you so accept it! We all know what the govt is doing to us is morally wrong and it shouldnt be necessary for you to rely on the kindness of others. But being as that kindness is their and you need it at the moment - take it - it also helps us to feel that we are doing something positive (((Big Hugs))) n love n hoping that a hospital stay is not recquired, but if it is - it is xxxx

  50. So sorry to hear Sue.
    Big hugs to you and your family.
    We all know how it feels.

  51. Hi Sue
    Hoping to contact you this way, I have done an exhausting search for an email addy for you, which is probably staring me in the face.
    I have a story I wish to send you which may help us all about how useless ATOS really are!

  52. The hospital should be able to put your husband up for free?!
    I'm so saddened by this and I work for the nhs. Makes me so angry.
    But that doesn't help you though does it!!

  53. Hugs Sue, I really hope that you can take up some of the offers of help given by such huge hearted people above, i am unable to offer such practical help but hope your hell is eased by the immense support voiced here. Sending healing thoughts and having been in the depths of health and debt hell myself and survived now with two beautiful grandchidren and a loving partner am looking forward to hearing that you and your family are in a better situation asap xx

  54. Hi Sue,

    Just in case I have missed anything.. Have you set up somewhere we can get you the direct financial donations already offered other than via the Research Fund - Fighting Disability Cuts yet?. Something / Somewhere you know it's intended for you..and your families this time of crisis ??

  55. Hi Sue-
    I feel your pain. It is so hard to focus on getting better when you have so many things financially to worry about. Have you looked into the appeal process? I've used this site as a great resource:

    I hope this helps you an others. I'll be following your journey and thinking out you.

    1. That is for USA claimants Shelley we do not have any in the uk as far as i know having spoken to the law society ?