Monday 15 August 2011

Alternative Reality

Good morning world! I'm back from my "holiday".

The next time I suggest it might be a good idea to go camping with two small boys, bowel disease and osteoporosis, could some kind benefactor please send me to the Caribbean instead? First class? With porters? I was so exhausted by the time we went to stay with our friends at the weekend, that I could barely get out of bed.

I valiantly smiled and joked through long days out at Longleat, cold, damp, evenings around the campfire and endless meals I really shouldn't have been eating, but truthfully, I'll need a fortnight to recover.

The only real mishap came after we'd driven through the wonderful safari. After lunch (plastic hotdog with chemical mustard) I just hit the "spoonie wall". I couldn't walk another step and simply had to lie down. Easier said than done in the middle of a several hundred acre estate where, sadly, Lord Bath was not available to offer me a bed for an hour or two. (Though I believe his track record may have made that a rather dangerous proposition in itself.)

We decided that I would get a cup of reviving tea in the beautiful orangery cafe, then find a quiet corner of the "secret garden" for a nap. Dave would take the boys to see the birds of prey. A little embarrassing certainly, but far better than fainting in the middle of the maze. The queue for tea was mighty and I looked at the counter in defeated-dismay. In the end I just collapsed at a cafe table in the beautiful rose garden and fell asleep on my arms, drugged by the roses warming the air with heady scent. After a while a kind waitress walked past and I swallowed my pride to ask if she could get me a drink. I'm disabled, I explained and just couldn't manage the queue.

With my tan and lack of any visible aids, I don't look at all disabled, but I guess falling asleep at the table gave her a clue.

After I'd had a drink, I shuffled painfully towards the beautiful walled gardens and curled up in a corner, the latest display for tourists to gawk and giggle at. I waited for Dave to come back with the boys. And waited. And waited. They just didn't show up! What could I do? I couldn't possibly walk anywhere to go and find them. I wondered if Longleat had a mobility centre? Could I get a wheelchair for the rest of the day? My phone was with Dave, so I couldn't call him, I just had to wait and hope they found me in the end.

It's a scary prospect. Being too "vulnerable" to help myself, suddenly removed from the safety of Dave to help me through, unsure what I'd do or how on earth I would alert anyone to my distress. I went over the options in my mind, frantically trying to form a plan. By this stage, Dave and the boys had been gone for over two hours. The sun was burning me, I was getting weaker. (I may have been cursing myself a little too, for being too proud to even carry a backup folding walking stick...)

I decided there was nothing for it but to throw myself on the mercy of a passing tourist, ask them to get a member of staff and try to arrange some kind of wheelchair (and someone to push it!) until we found my family. Just as I was plucking up my courage to call across the lawns to some random stranger, Dave appeared around the corner with two exhausted little boys. We're still not quite sure how we managed to miss each other - they'd been looking for me for over an hour, but I can't tell you how relieved I was to see them.

This is not the first time I've been stranded in the middle of a theme-park/zoo/play centre wondering why on earth I think I can do these things. Invariably, Dave ends up carrying me back to the car (we pretend it's a game for the kids) or I'm on my own with the boys and feel that same sense of panic - it's terrifying. "There's no such word as can't" is becoming patently less true as the years go by, but I'm too stubborn to admit it.

I cringe when I hear Dave tell the boys "Mummy just needs a little rest" or "Mummy's going to have a quiet day today" as he persuades them boys need boy-time and really, it's nothing to do with Mummy's "poorly" at all.

Still, despite my rather gloomy account, I made it, we had fun when we could, and I'm back in one piece.

I got home to my DLA decision. I'd sent my application off a month or two ago and knew the letter would probably be waiting for me when I got back. Sure enough, there was a brown envelope lurking amongst the flyers from Virgin media and the take-away menus. The brown envelope. Those few square inches of terror that makes any disabled person quake now.

Guess what? I'm fine!! Don't need any help at all, apparently. No help with Longleat-mobility at all. No help with care, nothing. The "reasons" quoted in the rejection letter were exactly the kind of kafka-esque nonsense we have come to expect from the DWP. They bore no relation whatsoever to the answers I'd given on my form - so much so that you'd laugh if it wasn't so depressing.

I have a month to appeal, they say. Great. Yet another hoop to jump through, more forms to fill in, more letters to write. Anyone who's not quite sure why I might need DLA can read my profile on the right hand side of this blog. Yet I don't qualify according to the "decision maker" It makes you wonder who does doesn't it?

We are not too despondent. It's incredibly common for people with long term variable conditions to be excluded from the welfare system. But I do feel a little grubby.

Somehow, being turned down initially makes me feel like a fraud for appealing. It's exactly how those in charge of the process hope I will feel. They know many won't bother. If I could possibly survive any more without acknowledging that my disability is becoming more intrusive, I wouldn't bother either. If I was wealthy, I certainly wouldn't bother to demean myself and my pride, begging for a paltry few quid a month.

But I'm not. And I need a little more help than I used to. It shouldn't really be a big deal should it? I have a severe form of a diagnosed long term condition with a clear, degenerative pathology. People like me are clearly going to need a little help if we're lucky enough to dodge death as adroitly as I have.

Still, I'm not wealthy, and I'm not as able as I used to be and Dave is caring for me more and more, so I shall just have to swallow that huge ball of pride and hold out my begging bowl. I suppose the only silver lining is that the system is now working exactly as those who designed it hoped it would.


  1. I had this on Friday - got parked under a tree with a cup of coffee while Dombed & the kids went to see the rhinos, zebras and giraffes. It was also the day I got the letter confirming the date of my DLA tribunal.

    Odd - maybe it's connected to the animals..?

  2. WokStation - Spooky! I saw two magpies too, so had expected a better outcome, lol.

    (Might as well base decisions on superstition as reality clearly plays no part.)

  3. The authorities are very quick to film suspected benefit scroungers, and so they should. Why don't they film some applicants as evidence they have a problem? Can't you ask the staff at Longleat to write a letter to confirm you had a problem with the basics of life like, walking, that sort of thing?

  4. I really don't think you should view it as holding out a begging bowl. Everyone pays into the system, be it through something as obvious as NI or something as unobtrusive as VAT on a pack of biscuits. You've paid in and so has everyone else. And we all pay in so that we can provide a safety net to those who need it. None of us want to end up needing that safety net but, if we do end up needing it, as you have, then we deserve what we paid in for.

    You aren't begging, you're claiming what you deserve and it's the DWP and not you who should be ashamed.

  5. Ashamed, you just get that appeal paperwork filled in this instant young lady. And if you want any help just ask

  6. Please appeal. I have a different autoimmune disease but have many of the same symptoms as you and I receive the higher rate of both components.

    With regards to mobility, I would recommend stressing whatever damage walking causes you. For care you need to make them understand that you regularly require other peoples assistance to preserve your health (eg. does you husband need to fetch and measure out your medicines when you are seriously ill).

    Good luck with your appeal and thank you for everything you do for all of us with this blog, your articles and campaigning.

  7. Hi,
    I don't understand... Cameron swore that people with severe degenerative illnessess would not be denied benefit... I have to ask do you think it could be because you are writing this blog?... Could the 'assessor' know who you are?... Although if they did they would have been more likely to assess you fairly... But as we know the changes to descriptors etc basically makes that impossible because no-one is ill or disabled anymore...
    best wishes

  8. Sue

    You are NOT begging, appeal now - you deserve it, listen to George

    Best wishes

  9. Awful, how can they say you dont have care of mobility needs, just think how you would manage if you didnt have partner? You would just be stuck at home 24/7 as you would be to ill to do anything or to worried about going out to be stuck without help. Sure you will get lots of support by going to appeal dont let them get away with it!!!

  10. About 50% of all DLA claims are rejected and a substantial number of those accepted were not the first attempt.

    My specific diagnosis is Asperger's Syndrome and sometimes people feel like telling me that it's "only a mild form of Autism". I was accepted for DLA the first time I applied (something which my Connections advisor insisted I did after the Jobcentre persuaded me not to claim Incapacity Benefit because I "probably wouldnt get it for a 'mild' condition'" and it made her furious, I think she wanted to prove a point to them) and awarded lower-rate care and mobility after a 3-hour personal assessment. Now I can put it in context by telling them to visit your blog, look at your health history and then that you were rejected for DLA without any personal assessment and that is how 'mild' the DWP thinks my condition is if they think yours has no significant care or mobility needs.

    But otherwise I would have thought you would have been accepted without them even requesting a personal assessment. Something smells, so I'm going to look for any changes that may have happened to DLA since I started claiming.

  11. Sue

    Glad you're back from holiday, and managed to have fun when you could.

    I'm writing from Church Aciton on Poverty - think we've spoken via Twitter before. Sorry for doing this via comments, but I can't find contact details elsewhere. I'd like to talk to you about the possibility of doing a video interview about the stigmatisation of people on benefits. It's for a series of videos we're doing highlighting various 'barriers' that cause poverty and exclusion, for Poverty & Homelessness Action Week 2012.

    If you're not able to do an interview yourself but could suggets someone else who'd be interested, that would be great too.

    Please give me a call on 0161 236 9321 or when you can.

    Best wishes

    Liam Purcell

  12. Sue,

    I came out of a 3 month stay in hospital with a 5 inch scar accross my head, due to a brain haemorrhage. I was also rendered partially sighted.
    I to was turned down from DLA on my first attempt.


  13. DLA is always turned down on first application, unless a helpful social worker or similar does the application for you and uses some very precise phraseology indeed. It seems that this is now happening with renewal applications - i.e. that DLA will in most cases only be awarded via appeal. Not very cost effective, is it?

  14. Have to say, Sue, you always surprise me with what you are able to accomplish and how strong you are, even with such a debilitating illness. I really hope your appeal is successful and know how much stress this is as I went through it all myself earlier in the year for DLA and will go through it again soon when the IB>ESA transition is done in my area.

    You should be proud of yourself, for fighting so hard for all of us sickies/spoonies/disabled, for being such a good mum not to mention a good human being.

    In the end we will win. We may lose more coming battles and we may lose some comrades due to the system. But we will win, I am sure of it now. As long as we continue to fight for compassion and policies where human beings are put above the needs of the City or Corporations.

    Good to see you back and continuing to inspire all of us. I'm not a monarchist, but if anyone deserves an OBE, it is people like you and Kayla.

  15. Just to fully clarify a point
    you only get DLA first off if your forms are filled in by a lawyer or skilled case worker only
    any appeal should always be overseen by a lawyer to make sure that the law is being implemented and not abused

  16. Disability gives the 'cost' of a holiday a whole new meaning. I think my record to recover from one is pretty much a year, a month is pretty much average.

    And of course we can always rely on the DWP to kick us when we're least able to deal with it...

  17. Hi Sue,

    15 years ago I worked for CAB and regularly completed claim forms and did appeals for clients. Most people got their claim turned down at first attempt. We generally told them to expect it.

    Definitely appeal but go to your local CAB / Money Advice Service / Community Law Centre. If none of these are available then I always used Disability Alliance, Disability Rights Handbook as a basis for appeal cases. Never lost one yet (and I still do the occassional one)

  18. Sue, you definitely, definitely should appeal your DLA decision. I have done my own DLA forms, my own appeal, helped others with their forms etc, so if you want any help, you know where I am (I believe you have my email address).

    To encourage you, I appealed when I was awarded lowest rate care and I expected middle rate, and ended up being awarded highest rate by the tribunal - to my complete surprise! (I'd already been receiving higher rate mobility for some years and that wasn't at issue at all). I'm not sure all tribunals are as friendly as mine was, but my appeal hearing was a very positive experience; the panel seemed to be trying to give a positive decision rather than trying to say no. Because I'm not all that confident about people believing me in relation to my condition, I nearly chickened out at the last minute but a friend came with me and I'm glad I saw it through.

    In preparation for the appeal, record some 24-hour diaries. I would suggest you record one for a 'good' day, one for an 'average' day and one for a 'bad' day. Then make a note of how many days per week, on average, would be 'good', 'average' and 'bad'. This will be very useful; I would suggest you submit the diary sheets in advance with the rest of your evidence, but make sure you take copies with you to the hearing.

    Before you submit them, ask someone to read your evidence, including your diary sheets, thoroughly, to ensure that you're not 'playing down' your problems; I have a hunch that you probably do understate your difficulties, so do be careful not to. For DLA you have to be honest, which some people find very upsetting, but if you need the money you have no choice but to be brutally honest with yourself, on paper and at the hearing.

    If you can't get legal representation, take a good friend with you who has some understanding of DLA and a good understanding of how your condition affects you. Rehearse with that friend how you would answer questions about what help you need at various times of day. Also, ask your friend to be a witness and to speak up and explain their perception of how much help you need.

    Let me know if you need any further guidance!! Go for it...

  19. Oh, just one more thing Sue - ask your GP to write a letter confirming what you have said in your diaries. That's what mine did - when I asked him, I gave him a copy of my diaries and he later said that it was only through reading those that he realised just how my clinical condition affects my life; he didn't doubt it, it was just a revelation to him. But my GP is very supportive, so it all went well.

  20. Sue, you must appeal. It seems that DLA is rejected first time in most cases just so only those who really need it persist (madness!). Remember this is disability living allowance - you need this to live - and as much as any of us hate being in this situation and wish we were rich enough to tell them to stick their forms up their backsides, we need the cash, as it helps pay for the care that makes our lives that bit bearable. Keep fighting.

  21. Please do take all the great advice given above, and appeal this decision, Sue.
    I, too, was turned down with my first application then, on appeal, I refilled the questionnaire with a Disability Rights expert.
    The difference in the answers, was the difference between me putting my best face on to what was asked, to the expert making me face up to the reality of my life!
    I absolutely hated every minute of it, but it meant that I won my appeal, and was awarded High Rate Care & High Rate Mobility, indefinitely - or, at least until DLA is changed over to the PIP :/

    Have you heard of Benefits and Work? They have marvellous advice to give for all the different benefits now.
    Here's the addie, if you need it:

    Best of luck with the forms, Sue. :)

  22. My husband was told by a doctor about ten years ago that the appeals panel get paid for each person they turn down. You don't have much chance when the system is weighted against you.

    We are currently appealing a DLA claim. He is worse than he was when he first got it, yet must be somehow better because they say he doesn't need it any more.

  23. Sue...
    I first have to say that you are an inspiration to me in your ongoing fight for disability rights and are a driving force for myself to continue to do what I myself am able to.

    Now you can stop blushing I next need to say that this is the first time I have been disappointed in you. And yet...I can understand why.

    My disappointment comes from a feeling that you are letting "pride" make you suffer more than you need to. Why not take a wheelchair for days out like you describe? It sounds like you have reached a stage where you need it. Why not use a stick to walk? And if it IS pride, pride in what exactly?

    I have a deteriorating progressive illness which is little understood. I have gone from an active sporty person to using an electic wheelchair with every stage inbetween. At first I resisted each change until I realised that the mobility aid actually gave me a new lease of life and was a blessing not a curse. And what was I saying by not wanting to use it? Did I think myself better, braver or stronger than those disabled people who do?

    Accepting ones physical limits is hard but it doesn't make you any less strong a person for it. And using the right equipment for the level of disability you have reached is absolutely crucial to your quality of life.

    Lecture over!

    I'm sorry to hear about your DLA refusal. As always it will be because you don't fit their neat little tickboxes. All I can do is wish you luck and strength to see it through.

  24. You shouldn't be on holiday at all. You should be out looking for work and not stopping from looking until you find yourself a job and can stand on your own two feet!

  25. Welcome back!!!
    We missed you :)

    I see the trolls did too!!!

  26. Either Mr Cannon is being a parody of a Mail reader or has genuinely just come across the blog and read nothing much beyond the title.

  27. Mark - As things stand, I am classed as severely disabled and have no need to look for work. Of course all that is about to change, but for the moment, you are totally wrong.

    Do try to remember which kind of scrounger you are abusing dear!!

  28. By the way Mason, HUGE fistbump for eagle eyes on the Left Foot Forward DLA stats article :)

  29. big hugs to you...I was turned down first go too, didn't appeal I gave up but wrote a really angry letter a couple of weeks later out of appeal time from my hospital bed because I had to call an ambulance trying to come back to the sofa from the loo and I wrote about how of course I can walk no problem that is why I am now in hospital. I had a tribunal and won.

    They treated my letter which was really part of me saying you are wrong and I am upset as an appeal. I had given up at that point.

    Welcome well and bask in the good to you x

  30. I also have a serious long-term condition and a disability, and my last application for DLA was turned down too. I sought help from the CAB and then got help from a welfare rights officer.

    Basically I was told not to bother with an appeal and just directly ask for a tribunal so as not to waste time as the appeals board would in all likelihood turn down my appeal anyway. I had gone to tribunal before so I was not nervous of doing so. The welfare rights officer prepared my case for me for the tribunal and sat with me, although couldn't speak on my behalf, I had to speak for myself.

    It was worth it because I was awarded DLA at the tribunal, although at a lower rate than my original award.

  31. A one-armed, one-eyed, one-eared, no-legged man can work in a call centre as long as he/she can sit in front of a computer, operate a keyboard, read a script on a computer monitor, and speak to customers on a telephone. Everybody can get a job and earn a damn good living if only they make a little effort. I'm fed up paying my taxes to let disabled people live like kings and queens in rented properties that I couldn't even dream of being able to afford and the go bungee jumping or sky diving or whatever at weekends. We need to get the deficit down. Sacrifices must be made and we must all try to pull our weight. We need to get real!

  32. What are your disabilities Mark?

  33. Sue, I'm sure you've got these already, but Crohn's & Colitis UK have some great resources for DLA applications and appeals. Plus their DLA telephone line.
    Good luck!

  34. Sorry, the link is:

  35. mark you haven't a clue about illness and must be new to reading this blog otherwise you would know how sue is affected only a complete fool would say she was fit for work

    her life is like mine but for completely different reasons in that we live on a day to day basis and can be hospitalized at any time of the day or night and with very serious repercussions if our luck isn't it

    I would suggest you read Sue's profile and stop acting the fool as i find your comments offensive and even if i was fit i certainly would never work with anyone like you as your a nightmare in the making and a complete disaster to anyone who comes into contact with you especially a sick person

  36. Mark
    There is a difference between being ill and having what the uninformed general public considers "proper" disabilities.

    Being ill is far more likely to make you unable to work even though there may be few outward signs.

    In my case it is the illness part that stops me working, not the fact that I use an electric wheelchair. I would still be unable to work even if I could run around like an athlete.

    And no, I can't sit at a desk. I'm writing this lying down in bed. And no, I can't work from home. After writing a few messages like this I have to rest for an hour or so, quite apart from the fact that the conditions of my tenancy don't allow it.

    Some people cannot work. Accept it and get over it. And quite frankly I'm fed up of having to come to terms with and live with a nasty illness and put up with selfish people's comments on top of that.

    When I could still work I gladly paid my taxes and didn't begrudge disabled people what they needed. Why can't other people without whinging?

  37. [QUOTE]

    There is a difference between being ill and having what the uninformed general public considers "proper" disabilities.

    Being ill is far more likely to make you unable to work even though there may be few outward signs.

    In my case it is the illness part that stops me working, not the fact that I use an electric wheelchair. I would still be unable to work even if I could run around like an athlete.

    And no, I can't sit at a desk. I'm writing this lying down in bed. And no, I can't work from home. After writing a few messages like this I have to rest for an hour or so, quite apart from the fact that the conditions of my tenancy don't allow it.

    Some people cannot work. Accept it and get over it. And quite frankly I'm fed up of having to come to terms with and live with a nasty illness and put up with selfish people's comments on top of that.

    When I could still work I gladly paid my taxes and didn't begrudge disabled people what they needed. Why can't other people without whinging?[/QUOTE]

    Loopy S
    what you have said word for word is spot on and i would think all sick and disabled people would agree with your statement

  38. Watch out, watch out, the trolls are about.
    Must be reading the Daily Fail as it fails their readers on a daily basis. Come to think of it it just about fails everyone. Sue keep up the good work and chin up.

  39. Again, I say, don't sweat the numpties guys.

    Seriously, what kind of person takes the time to search out someone's blog (he came from Labour List I believe) and then abuse them using the most ignorant, ill-informed nonsense?

    Welcome they. They show halfway normal people just what we're up against and how truly small minded and nasty some people are.

  40. The one thing that will do most to sort this out once and for all is the reclassification of disabilities into at least six separate main categories simply because being physically disabled seems to be the only recognised category and the only category where a lucky few may be able to work and indeed play sports at Olympic level even. Not just among trolls and the Media agenda but more importantly politicians and other relevant decision makers have this misunderstanding. Each of the below headings covers a wide range of disabilities and abilities.
    Physically disabled (physical)
    Conically sick (physical)
    Conically ill (mental)
    Conically sick and physically disabled
    Conically sick, ill and physically disabled

  41. I totally though Mark was a spoof first time round; surely no-one that thick would want people to realise it... But no. Tell you what, Mark, I'm sick of idiots with persecution complexes having access to computers, so step away please. After all, it is my right to tell other people how to live their lives, isn't it?

  42. Surely Mark must be a spoof. Bungee jumping?? Either way, it's mean to try and upset people like that. Why be horrible to people who have enough hassle in their lives already?

    Anyway... I was thinking about this post all week, partly because it felt so familiar, and partly because of the comments about not being a hero and accepting when to stop and make adaptations. I think it's important to recognise to oneself and others when one is in 'Superhero' mode; when you force yourself onto an adrenalin high to get over the pain and fatigue because you have no other choice. You say, 'I can do this', grit your teeth, and switch off your awareness of your body as much as you can.

    Superhero mode distorts one's judgement - you go forward like a steamroller but often making slightly bonkers decisions. Then the adrenalin runs out and you fall over. And your pain and fatigue comes back ten times worse and smacks you in the face.

    If one is living like this all the time, it's very dangerous unless someone else is looking out for you constantly. Getting better rested and healthier means you can then spot the signs and try to slow down before it takes hold, but not all of us are lucky enough to get to that place. Also, not being in superhero mode is depressing because you realise you shouldn't be doing so much but life demands that you do.

    Apologies if stating the obvious, but does being in superhero mode make it even more difficult to do DLA applications and the like? Our perception of our own disabilities is damped right down and we do not want to think about it. And that's when we need help the most.

  43. Yes, if only people knew what we went through everyday, with chronic illnesses. With my kind of disability, I can work, but not when my chronic illness makes me ill! If they could swap places with us for one day, they would not envy us our benefits. I'd gladly give up my benefits if I were fit and well, indeed I worked full-time until I got so ill I had to give it up. Being hospitalised is no fun!

    Oh, and having a disability as well does make life harder and more expensive - that's a fact of life, and therefore DLA helps cover the costs and actually enables disabled people to work, because without it, how could they GET to work, etc? (For critics, DLA is not related to out-of-work benefits.) It's sooo easy to be an armchair critic.

  44. *hugs* if you want em, just a few thoughts, for starter, get that bloody appeal sorted, what the hell is the point of civilisation if we don' help those who need our support? second, sounds like you could do to have a second mobile between you, maybe just a £10 PAYG phone for such situations (my parents barely use theirs so beyond initial outlay there's hardly any cost). I understand not carrying the stick because the extra weight pretty much guarantees you'll need to use it, right? But yeah. You had a nice day overall?

  45. Thanks for the lovely comments. Lots of food for thought.