DLA – Tribunals and ME/ CFS

Please see the Benefits and Work
This is an extract from their website:

Decision Makers are told by CCM how to decide, using verifiable information, whether a claimant has a moderate, mild or severe condition and what level of award is likely to be appropriate. Benefits and Work has received a copy of the guidance relating to Chronic Fatigue Syndrome and M.E., but the new system covers all the major health conditions for which DLA is commonly awarded. If adopted nationally, the new system will affect both new claimants and existing claimants when their awards come up for renewal.

In relation to CFS/ME the new system suggests that claimants with mild or moderate CFS/ME are unlikely to be eligible for any rate of DLA whatsoever, even if the condition has lasted for years. Claimants with severe M.E. as defined by the computerised information system, however, seem to have very good prospects of an award of both the mobility and the care component.

If the same pattern is repeated across other conditions then it seems likely that there will be both winners and losers under the new system. Those with the right support in place may benefit from higher and longer awards whilst those who have had less contact with health professionals or who do not have the correct signs or symptoms, may lose out or be obliged to appeal to have any hope of an award.

DLA Tribunals and M.E.

I have been so stupid but call it a symptom of M.E.. When I wrote to AfME about my claim for DLA and they said they wanted to print my email it never occurred to me to put my experiences on my website. Would have been more helpful if I had. Doh! Yet another M.E. symptom.

So – a bit late in the day since the article appeared in the August edition – here is an article about my claim for DLA. To be frank it is an update because as you read you will realise that it is not only about my actual claim but about other’s experiences and their emails to me and my subsequent thoughts on the matter.

My Tribunal for DLA went well. I won. Although I didn’t get the full care or mobility components I got both on the lower scale, I still feel I won. I am not bed bound although I am on very, very bad days. I feel that if all M.E.ers applied for DLA, the government would be ‘forced’ to pay for research into this hidden disability. It is money that talks and if the government begin paying out mega bucks in benefits they may prefer to spend money (in research) in order to save it.

However why did I win?
This is the article in the AfME magazine Issue 53 August 2005: DLA: Don’t give up.
In January my husband and I attended a tribunal to hear my appeal after I was turned down for Disability Living Allowance (DLA). We won the low rate mobility component and low rate care component. I was so overjoyed that I wanted to share my experience and to encourage other disabled readers to fight for their rights.

In my supporting documentation I had stated that I felt I was disabled as I fitted the criteria. But I didn’t explicitly explain my mental/cognitive symptoms such as what I meant by ‘foggy brain’ and how this affected me (eg often being unable to talk on the phone or write a letter) and it would have been helpful if I had. The appeal paner were as helpful as they could be within the law.

I gave my condition a daily colour code based on red, amber and green. Red is really awful days. I also asked the panel to look at the law for disability in reverse – for instance, it isn’t that I can’t walk a hundred paces or climb stairs, but rather if I do, then I’m totally exhausted and am left unable to cook for myself. It was the colour code, and the list of daily symptoms and the bullet points that was helpful to the panel.

Then my husband explained that I can do things once but that I’m unable to sustain the effort required. The problem for people with ME is that they will struggle to do things. Can I walk a hundred paces? Yes. Can I run a hundred paces? Yes. Can I sustain it? No. How will I feel afterwards? Dreadful.

I am thrilled that we won our case. However if I had to got through it again I would represent myself differently – factually outlining the mental incapabilities in detail and the physical exhaustion if I did do anything.

After several emails to me after the article appeared in AfME I now want to say this. I didn’t understand when the man on the phone from the DLA dept told me to act out a bad day. So I would advise anyone making a claim to write down a bad day from the moment they wake and memorise it. The point I forgot about my bad days is my total lack of understanding, and sometimes even hearing, of what is being asked of me. I forgot to say how I would look at my husband and wonder why he was still talking to me, when he must realise that my brain cannot accept or understand anything he is saying and in fact is beginning to hurt with the effort. I forgot to tell them about the empty white brain I could ‘see’ after a strenuous day. About how my memory played tricks with me and made me think that something that had happened moments before seemed like it had happened yesterday – even while I am talking to people, I can have this blip – due to doing too much, due to payback (more about payback later).

I should have attended the tribunal in a wheelchair or at least with a stick because on a bad day I cannot walk easily without my muscles aching like mad and sweating profusely and my heart pounding and feeling like I want to faint.

The Tribunal Panel do understand that the individual is ill and has a diagnosed condition. They are not disputing that. They are endeavouring to discover how disabling the condition is for that individual. They are looking at how mobile you are and if you can cook and clean yourself.

In my case I wish I had remembered a friend of mine who has rheumatoid arthritis, she has the full care and mobility allowance. She cannot do things because of the deformity to her joints. M.E. people cannot do things because of the payback. I think this payback is what the Tribunal fail to understand.

This is why it is so important at the Tribunal that the petitioner acts (better word is ‘illustrates’) out a bad day, to illustrate the payback because it is the payback that causes the problems with care and mobility and it is the payback we need to get the panel to understand.

So what happens in payback?

I responded to one email I had about this subject that in retrospect I perhaps shouldn’t have attended the hearing. I said this because I am not too impressed with my acting/illustrative skills.

I wonder if it is a characteristic of those with M.E., but I know that I am a perfectionist and I feel imperfect with having an illness like M.E. that I cannot find a cure or a system to support it. So in a bid to feel better about myself I try very hard to be and look well. I do it without thinking, so much so that recently in a store when I began to feel ill, I begged my husband not to get help because I felt so embarrassed. So how could someone like me successfully illustrate a bad day to a tribunal panel? Maybe I thought to myself it would be better if I didn’t attend. Because quite honestly if I am not well I am not seen in public. I am in bed or on the settee, eating nuts and seeds and drinking bottled water – if I remember.

As I write this now, I think it is best to attend. BUT be ill, don’t be polite, don’t be brave. At my tribunal I was beginning to feel very uncomfortable after 10 minutes or so. I wanted desperately to lie down on my back and rest my tired and beginning to ache muscles in my back and in my neck and in my arms. But I politely didn’t say a word and carried on trying to give intelligent answers to questions I didn’t understand. My brain was really struggling at one point and tears fell down my face and I began to cry. I felt so stupid. This isn’t because the tribunal panel were making me feel uncomfortable it was because I felt ill and couldn’t explain. This is one exam you want to FAIL! Not easy for perfectionists.

If I go shopping I can shop for a few minutes before needing a sit down. Generally when I get to the shops I look for a café. If I don’t do this I will ache, my heart palpates, I am breathless, I sweat, I feel dizzy, I may need to urgently go to the loo (and not to wee). Sometimes I can go shopping and not feel all this. But the next day or day after I will be in bed and it will feel like my body is cracking in two to get out of it. The tribunal panel did ask me about a bad day and to describe it and then they wanted to know how far I could walk. This I found impossible to answer until I said: ‘O, when I get to the shops I go for a coffee or in my case decaffeinated coffee.’
‘You mean to say,’ said the Nurse, ‘Before you start shopping you look for some way to sit down?’
‘O yes!’ I replied, thinking that was exactly what I had just said and realised that it wasn’t. I continued: ‘I can only shop for a short while before I am looking for more ways to sit down.’
And then I thought to myself: ‘is that the truth? Sometimes I can shop normally.’ I worried about this until I realised that would have been an amber day and not orange and it is an orange day or even red I am meant to be describing. But then I continued arguing with myself: ‘if it was a red day, I wouldn’t be shopping!!’ This is why it is so difficult to illustrate a bad day. At one point the GP asked me how far I could walk. He took me through a park I knew but it was impossible to answer because all I could say was: if it was a bad day I wouldn’t be walking in the park! If it was a bad day I wouldn’t be allowing someone to push me in a wheelchair.

Then my husband was allowed to speak. And it was his use of the word SUSTAINED and BRAIN FOG that helped the panel and pennies began to drop in their brains.

I think the brain fog should be fully explained. Brain fog and mental fatigue means that not only are things misunderstood, they cannot be received or remembered. One cannot work out what to do next. One cannot remember the next step in a sequence. I was trying to add up some numbers. It wasn’t the sum I couldn’t do; I was trying to remember what a 2 was. Mental fatigue means you cannot allow someone to put anymore information in your brain. No don’t tell me the joke. No don’t explain how a locomotive works. No don’t show me how to turn the TV off, I cannot receive anymore information and my brain will explode if you persist.

My husband explained this very well. The word SUSTAINED told the panel simply that I may think I can do tasks but I cannot complete them without due stress and discomfort and days being lost because of the pain and incapacity afterwards.

I hope this helps those who are preparing for their hearings. Please feel free to email me or add a comment to this article I would love to hear from you. I wish you every success with your claim.

11 thoughts on “DLA – Tribunals and ME/ CFS

  1. Hi Marianne,
    I have just come off the phone yet again from DWP after being turned down for the second time for DLA. I was starting to get upset but then I remembered your article in Action for ME.
    Everytime I ring the DWP I get interrupted by the person when I am trying to explain things to them, its as if they have notes next to my name to say its that girl with the made up illness again, try and get her off the line as quick as you can.
    It would be so easy to give up at this point but then I think why should I especially after reading your story.
    Take care

  2. Hi Jenny, have you had a letter to say that you have been turned down for DLA and that if you disagree with the decision then you can apply to take it to an independant tribunal? If not, then phone DWP and ask how you can go to tribunal about the decision.
    So much is reported about how GP’s are unsympathetic with the condition of ME that it puts those with ME on the wrong foot with the establishment so much so that we tend to become defensive when speaking to anyone about ME. It is better for us with ME to assume we have their sympathies and understanding, that way we approach the person we are speaking to with a measure of control. The DWP and the Tribunal panel understand that you have a diagnosed condition and so they do not want to waste time discussing symptoms and the effect of these symptoms on your lifestyle. They want to cut to the chase and discover how your personal symptoms effect the part of your life they are concerned which is the personal hygiene, feeding and mobility. So to illustrate a bad day to the GP that comes to your home or to the Tribunal Panel, you need to not wash that day, be wearing your pyjamas or easy clothes (my case is jogging bottoms and a loose T-shirt), no make-up (what is that? The stuff that causes rashes on your face?) and have all your belongings around you on the settee including several mugs of stale herbal tea and water and bags of nuts and seeds (I am describing myself on a bad day!!!) I hope this helps. Please add a comment if you need anymore info. I am hoping soon to publish one or two other success stories with DLA but I am waiting for the owner’s permission of their emails to do so.

  3. Carol left this message on a previous article:
    — CAROL Oct 23, 05:20 AM #

  4. And this email was sent to me by a reader of this website:
    Hi Marianne

    Thanks for your email. Well I went on Monday and used a colour codes diary etc. so thanks for that idea…they seemed to like it. However I was only partially successful in that I got the low rate for care but nothing for mobility!!!! When I asked why they seemed to suggest that I had said I had got worse since Nov when I made my claim and they could only go on what I had put in Nov. It drives you mad! So not sure what to do next as the girl from the Disability Rights who went with me said I could jeopodise the money I have been awarded if I put in another claim and it isn’t successful????? The ironic thing is that they gave me tha care component as I said I couldnot cook a meal as if I had done anything else that day it would leave me too exhausted…..I actually enjoy cooking and its the getting around that gives me more of a problem!

  5. Hi, Marianne
    Having got ill 21 years ago I cannot again and again enough stress my wonder at how much we suffer and how much we can cope with, be it pain, family´s ,relatives´, friends´, workmates´and health professionals (mis)understanding not to mention healthcare authorities´arrogance.
    I am now going through an attempt to early retirement and it´s such an ordeal! Legislation in my country is in Stone Age although within the EU… How is that in UK ?
    Thanks for your commitment to our common cause.Love, keep in touch,

  6. I have always suffered with Arthritus, but about 3 years ago I was taken ill in work and sent home, I was put on Incapacity Benefit, and I was back and forth to the Doctors with palpatations, hypertension, arthritus etc, I even went for tests for my heart due to family history and was told there was nothing wrong and discharged, in a matter of months I had suffered a heart attack, I had a stent fitted, but I still have a narrowing on the main artery and one of the small vessels at the top of the Heart is blocked, so I now have to suffer with Angina, I have Asthma/COPD, and they cannot give a firm diagnosis of what Arthritus I have, even the specialist said that is not what the patient wants to hear but your symptoms are like Fibromyagia and Osteoarthitus, and I have water on my knees and legs! All of the above have made me almost immobile, I hate going out if even to the local shops because I get so tired and I get Angina and breathless, they have suggested a wheelchair, but the Occupational Therapy Dept do not help out because of the funding, and I have contacted Charities but they have not got back to me as yet, I use crutches but this hurts my hands and arms, I too have to think of where seats are in shops, which is nearly always not there, I get very anxious and the pain if I have to stand is unbearable.

    I now have a DLA Tribunal on 5th Sept, 2011 at Haverfordwest Courts, and I really do not know what to expect! For the past 2 days I have been housebound because I am feeling so exhausted after going to CAB in Town! Oh to be able to walk properly and not feel so exhausted!!! I want to write a typical day down, but just cant find the way to do it properly! Is there anybody that can aid me. Many thanks.

    • Hi Joan
      It would be best if you could take a family member or friend with you to the DLA Tribunal, someone who knows you best. Someone who could drive you there. If there is no-one, then a member of your local community group or church. For example in our local community we have a group of organised volunteers who help anyone who needs help from gardening to lifts to the hospital. Ask someone for help. You should tell the DLA Tribunal about your worst day. You should take your crutches with you. Don’t try to be clear, just be yourself. They need to hear words like ‘cannot sustain’ to everything. Explain what you cannot do on a bad day and then tell them how many bad days you have a week. My husband told my tribunal panel that I couldn’t sustain anything and a penny seemed to drop in their minds. I ended up unable to speak and in tears and in pain. I wish I had lain down on the floor because that was what my body was screaming at me to do.

      On the other hand, what helped me with my heart palpitations and the painful pin pricks of pain like the fibromyalgia is a Calcium and Magnesium supplement. I highly recommend this to you. Also avoiding all additives and preservatives and sulphites in food.
      I hope this helps. Please email again for any more information, my email (which is also on the website) is: gutierrez.marianne@gmail.com

  7. Hi Marianne,

    I am 22 and have just been diagnosed this summer with CFS ME after 4 years of doctors tests and being fobbed off with depression and poor diet. I recently applied for DLA because I am struggling massively at the minute and have had to leave my part time job. My application was rejected, but since this I have seen my specialist nurse at the hospital, and been in contact with an ME support work and they have both pushed me to appeal against the decision. I have read through your article and gained lots of usefull points to be made in my reconsideration letter. Is there anything else you would suggest putting in it ?

    Thanks hannah

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