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Have got any chance of getting ESA?

Discussion in 'Finances, Work, and Disability' started by tinacarroll27, Aug 29, 2016.

  1. tinacarroll27

    tinacarroll27 Senior Member

    Hi all! Just need a little advice and maybe encouragement as I am feeling a sense of panic over this situation I am now in.. I have been struggling trying to live on my savings for the last 3 years since I had a massive relapse and went from mild to severe ME. I am housebound and spend about 22 hours a day either in bed or lying on the sofa. I can stand up and move around but I can't stand very long or walk very far. I haven't seen a doctor for about 3 year because they had nothing to offer but also because I have been too ill to travel and they would not come to me. I find travel makes me worse but my GP's surgery is just a short distance and I now feel I could just about manage it in a taxi and I feel I have to try and force myself anyway as I now need to apply for ESA and get a sick note. What is freaking me out is the thought of the work capacity assessment and what that will put me through or if I am expect to travel a long distance to one of their centres and if I have a chance of actually getting ESA anyway with ME. I am also worried that if my GP knew how ill I am with this I might get pushed into seeing a psychiatrist. The whole thing is freaking me out! Have I got a chance of getting ESA or is it hopeless in the UK? I live alone and get no support from family and don't know how I am going to make ends meet if I can't get ESA. Thanks
    Izola, Invisible Woman and TiredSam like this.
  2. wastwater

    wastwater Senior Member

    I would think you would get it eventually just be willing to appeal everything,they also say it doesn't go on the diagnosis but how you are effected.
  3. charles shepherd

    charles shepherd Senior Member

    Comprehensive information on ESA from The ME Association:

    The MEA receives a huge amount of often quite complex queries about ESA and we do not have the funding from membership fees available to employ someone who can deal with DWP benefit queries in the detail that they often require

    So I have put together some basic information on ESA applications, reconsiderations and appeals that should be of help

    MEA information leaflets can be ordered through the MEA website shop:, or by using the literature order form in ME Essential magazine

    General information on ESA for the benefit of other people who are going through either an application, review or appeal process:


    The MEA has a general information leaflet covering ESA as it applies to ME/CFS
    We also have a detailed step-by-step guide to filling in all the paperwork that is involved if you apply for ESA:

    Feedback from our members indicates that this MEA guide has been very helpful in making sure that the DWP gets the right information about this illness and how it affects your capacity to work.


    If an application for ESA has not been accepted you can ask the DWP for a reconsideration

    And if you feel you have a good case you should appeal - because there is a very high success rate (currently around 40%) on appeal, especially when you can back up your case with good supporting medical evidence from health professionals and others involved in your care and management

    The MEA has an information leaflet covering appeal procedures


    I have been involved in the preparation of an Atos training document and one of the most important messages is that medical assessors must ask about the degree of fluctuation and variability of symptoms in ME/CFS and that people must be able to perform the WCA tasks in a manner that is reliable, repeatable and safe - to both themselves and to others.


    You need to supply as much 'supportive medical evidence' as you can
    Do NOT rely on the DWP asking for and chasing this up - they won't
    This means obtains written support, if you can obtain it, from:

    1 Your GP
    2 Members of a multidisciplinary hospital based service - if you attend one: Doctor, Physio, OT etc
    3 Anyone involved in your social care - do you have anyone helping with care or mobility needs?
    4 Anyone else who is involved in your care

    Letters should focus on your level of disability and relevant symptoms (e.g. cognitive dysfunction; orthostatic intolerance/hypotension etc) in relation to the way in which this is going to be assessed for DWP benefit purposes
    The fact that you have a fluctuating medical condition, and this means that you may not be able/are not able to carry out tasks in a manner that is reliable, repeatable, safe (to you and to others) and in a timely manner should also be included/stressed


    As you may be aware, we still believe that far too many people with ME/CFS are being refused ESA, or are being placed in the WRAG group when this is not appropriate.

    We are members of the DWP Fluctuating Conditions Group that has been working with the DWP, and with Professors Malcolm Harrington and Paul Litchfield, on trying to improve the way in which claims for ESA are assessed through the Work Capability Assessment

    The FCG produced wide ranging recommendations for reform of the WCA, including new WCA descriptors focussing on measuring severity and fluctuation of symptoms/disability - which were assessed in an evidence based review carried out by the DWP. We are now discussing with the DWP and Maximus (who carry out the medical assessments) how this work can be taken forward, especially in relation to the introduction of a semi structured interview.

    The FCG has regular meetings with Maximus, who have taken over the medical assessment contract from Atos, and with the Countess of Mar at the House of Lords (who can ask parliamentary questions relating to benefit problems)

    Overall, the work that we have been doing has resulted in a progressive and significant increase in the number of people being placed in the ESA Support Group. This is reflected in the quarterly statistics produced by the DWP on ESA application outcomes.

    This change also reflects the fact that some of our key recommendations, especially those relating to people being able to carry out WCA tasks in a manner that is repeatable, reliable, safe, and in a timely manner have been accepted by the DWP.

    The FCG report on WCA can be found in the document archive on the MEA website:


    In addition to the information already referred to, this is an updated version of our 10 key points on ESA applications and appeals:

    Ten Important things you should know about the Employment and Support Allowance (ESA) and the Work Capability Assessment (WCA) if you are:

    ·Applying for ESA

    ·Asking for a reconsideration of a decision

    · Appealing against a decision

    (1) Feedback to The MEA indicates that a significant proportion of people with ME/CFS are finding it very difficult to qualify for ESA - the long-term sickness benefit for people who are unable to work. Entitlement to ESA is assessed by using what is called the Work Capability Assessment (WCA). The WCA does not determine entitlement to ESA on the basis of the named medical condition (e.g. ME/CFS) a person has. Your entitlement to ESA is supposed to be based on the effect that the disability or health problems resulting from having ME/CFS has on your functional capability to work.

    (2) The situation regarding ESA has been made even more difficult for people with ME/CFS following legislation to bring in a revised set of WCA descriptors back in 2011. This legislation also removed some of the original WCA descriptors (e.g. the one on cognitive dysfunction – problems with short-term working memory and concentration) that are very relevant to people with ME/CFS. More information on the WCA descriptors can be found at: (>> pdf of Statutory Instrument)

    (3) People who are currently claiming ICB are now being re-assessed to see if they are eligible for ESA. Feedback to The MEA indicates that they are having very similar difficulties.

    (4) The WCA descriptors are a list of questions relating to various aspects of disability and ill health along with point-scoring answers. The MEA believes that the current set of descriptors are not a fair or effective way of assessing capability for work in people who have long-term fluctuating medical conditions such as ME/CFS. Our reasons for coming to this conclusion can be found in our submission to Professor Malcolm Harrington’s review of the Since then, The MEA has been involved with a group of charities representing people with fluctuating medical conditions in the production of a report that contains recommendations on how the WCA descriptors could be made fair and effective for people with fluctuating medical conditions. The recommendations in the report, along with recommendations covering mental health descriptors, have been assessed by the DWP in an evidence based review. The results of the review can be found here:

    A copy of the Fluctuating Conditions Group report can be downloaded on the MEA website:

    (5) So if you are applying for ESA, or appealing against a refusal to grant ESA, or trying to move from the WRAG to Support Group, it is very important to give careful consideration to the way you provide answers to the WCA descriptor questions.

    (6) During a House of Lords debate, which sought to annul the legislation which revised the WCA descriptors, a number of useful contributions were made which relate to people with ME/CFS and other fluctuating conditions. Lord Freud (DWP government minister) made the following important statement, which follows on from the work of the FCG, and is very relevant to people with fluctuating medical conditions:

    It must be possible for all the descriptors to be completed reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity.”

    A Hansard transcript of the debate can be found on the MEA website:

    (7) There is a high rate of success on appeal involving ESA refusals – with around 40% of DWP decisions being overturned. So anyone who believes they have not been treated fairly should consider going to appeal.

    (8) The chances of success at appeal are often increased by appearing in person and providing good supportive medical evidence from health professionals (and any other professional – including care workers) who are involved in your care – especially if this was not provided at the time of the application.

    (9) Useful information on benefit appeal procedures can be found in a presentation given by Dr Jane Rayner (Chief Medical Member of Social Security tribunals) to the Forward ME Group at their meeting on 26 January 2011. The minutes of this meeting can be found here:

    Dr Jane Rayner has also produced a video on the appeal process. This can be found on the MEA website:

    The Tribunal Service has produced a useful booklet called ‘How to Appeal – A Step by Step Guide’. This can be downloaded from the Tribunal Service website:

    (10) The MEA has a fully comprehensive list of leaflets covering all aspects of the benefits system – including applications for individual benefits and appeals.

    Three helpful videos have also been produvced by Maximus on what happens during the process of claiming ESA,, including the medical Assessment:

    Information last updated in August 2016 by Dr Charles Shepherd - Hon Medical Adviser, MEA

    Please note that regulations relating to DWP benefits are constantly changing and that this information is correct at the time of publication.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    justy, Invisible Woman, Kati and 2 others like this.
  4. Cheesus

    Cheesus Senior Member

    I get ESA and PIP. When I first applied I was as sick as you (I am even sicker right now and can't move from bed at all). My applications were successful and I got placed on the higher rate for PIP for both daily living and mobility, and also I got placed in the support group for ESA (i.e. I do not have to do any work related activity things).

    So I would say yes, absolutely you can apply and you will probably be successful. However you should also approach the application and assessment carefully and strategically so as to get this right the first time around. When I applied for PIP I was placed on the lower rate for daily living, I wrote to them explaining why I disagreed with the assessment, and they wrote back agreeing with me and moved me up to the higher rate. It was pretty straightforward.

    I have never had a face to face assessment for ESA because I applied for that after I was awarded PIP, so I just sent them through the assessment from my PIP and they saw that as sufficient evidence for my ESA. My PIP always comes up for renewal before ESA so I keep just sending that assessment through every two years.

    The nurses who assess me for PIP are, I think, the same people who do ESA. They have always been very nice and sympathetic. You hear horror stories about people going to assessments with nurses who really do not understand the realities of living with chronic conditions, but obviously those stories are going to stand out more than people who have good experiences.

    All in all I do not think you need to be worried about it. Just make sure you do some reading about it before hand to make sure you know what the assessment criteria are so that when you apply you can clearly demonstrate your need.

    Let me know if you have any questions.
  5. tinacarroll27

    tinacarroll27 Senior Member


    Thank you for all your help and information. I feel a bit better about applying for ESA. I am currently waiting to hear about pip as well, as I applied for that a few weeks ago and got a letter of support from DR Myhill as I had not seen my GP for some time, although my GP knows I have ME from the past. Will have to wait and see! It's all a bit stressful!
  6. charles shepherd

    charles shepherd Senior Member

    MEA notes on PIP Applications, Medical Assessments, Reconsiderations and Appeals:

    1 PIP checker from the DWP

    As we are currently dealing with a lot of queries and news items about PIP, including the difficulties people are facing when transferring from DLA to PIP, it's worth noting that the DWP has produced a useful website checker that you can fill in to find out if you can claim PIP and what will happen if you apply for PIP
    You can use this tool to check:
    • if PIP affects you or someone you care for
    • how PIP will affect your child
    • when you can make a new claim for PIP or you are transferring from DLA to PIP


    Firstly, we have a very comprehensive MEA guide to filling in the PIP application forms
    The MEA guide goes through ALL the PIP questions and how to answer them in relation to ME/CFS
    It also emphasises some of the key points that we have been discussing with the DWP in relation to PIP - eg that you are able to carry out the activities being assessed in a way that is reliable, repeatable, safe to yourself and others, and carried out in a timely manner

    People have found this guide to be very successful in relation to obtaining this new benefit
    MEA guide to PIP and other DWP benefits:


    The CAB have a very useful guide to all aspects of the medical assessment with Atos, Capita or Maximus:

    If you are unable to travel to an assessment centre, the medical assessment can be carried out out in your home.
    Contact the assessment centre, explain your situation, and obtain written support from your GP if there is a reluctance to do a home assessment.
    Please note that this assessment is not carried out by the DWP - the report on your condition is then sent to the Decision Maker at the DWP


    Thirdly, if your application has been refused there is an initial mandatory reconsideration process


    Fourthly, in relation to an appeal, there are several things people can do to increase the chance of winning an appeal. These include:

    a Obtaining good supportive (written) medical evidence to support your case. In relation to PIP, this can come from people involved with your care (eg a care or social worker if one is involved) and any health professional who is involved with your care (eg OT, physio, nurse) in addition to your GP and/or consultant
    b Turning up in person at the appeal
    c Getting feedback from people with ME/CFS who have been through the appeal process - you could do this by using MEA Facebook where we have over 6,000 regular members who are always willing to pass on this sort of practical feedback


    In addition, this is a useful source of information on preparing for an appeal from the MInistry of Justice:
    This video, made by the Ministry of Justice with an introduction by Dr Jane Rayner, Senior Medical Adviser, First Tier Tribunal. Dr Rayner is a very kind and helpful doctor whom I have met at the House of Lords, is also useful - although it refers to ESA:

    Minutes for meeting at House of Lords with Dr Rayner:

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    Updated: July 2016
  7. Luther Blissett

    Luther Blissett Senior Member

    Yorkshire, England
    Hi Tina,

    just to add, you can ask for a home assessment, and you will be asked to provide a doctors letter explaining why you cannot attend. An inability to attend regular health appointments is an acceptable reason.

    You might be charged by the doctor to produce this letter, and the charges vary. Mine recently cost £30.

    If you need help with the form, or have any questions about anything, please feel free to send me a message or start a new thread/or add to this one. The forum has people with experience of the whole process and good advice.

    (The form can be filled in on your computer and saved, as long as you have a way of printing it off.)

    Hope you're less worried now, there is help at hand.

    Izola, justy and Invisible Woman like this.
  8. tinacarroll27

    tinacarroll27 Senior Member

    Thank you everyone for your support! Yes I do feel better and I have an appointment to see my doctor to get a sick note. I will also try and get a home visit for the assessment and hopefully my GP will give me a letter for this and I don't mind paying for it. I have also joined a website called benefits and work,
    they have lots of information on ESA and PIP and advice on filling in the form. I still have lots to do but I feel more positive. One step at a time I guess. I will let you know how it goes!! Thanks!!!!!!xxx:):)
  9. Invisible Woman

    Invisible Woman Senior Member

    Do your homework (the guide from the MEA may appear daunting, but I don't think I would have gotten ESA without it). Take your time filling in the forms. It is an unpleasant process but less so for some people - especially if you have some supporting medical evidence.

    If you ask for a home visit your GP will need to explain why, or else they'll try to turn you down. If the GP can emphasize that you have a fluctuating condition that will be made much worse by any attempt to travel that will help.

    When posting stuff to the Benefits Agency, or wherever, make sure you keep a copy of all paperwork, including letters by your GP. ALWAYS post ESA/PIP related docs via a signature required service and check and print out the proof of signature. This will be very helpful for when things get "lost".

    Good luck with it. You're not alone.

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