I appealed – and I won!

Apparently, I did it! I challenged Atos’ decision that I merited nil points at Work Capability Assessment and I won. The information provided has apparently taken me from the zero points awarded by the Health Care Professional (HCP) and the decision maker, to at least the 15 points required for me to be judged as having limited capability for work. That’s a huge leap, and I am delighted that the appeals team has followed the logic of my argument that basing a decision on a one-off interview is unfair on people whose diagnoses are based on the fluctuating nature of their symptoms. I thought it might perhaps help others to see something of my appeal document, which I prepared on my own without the input of my doctor or an advocate. I’ve chopped a lot of it, because it was very long. I have removed information about my various medications and how they affect me, mentally and physically. The original letter also pulled apart the HCP’s analysis for each descriptor, showing how the decisions were flawed and failed to take my diagnosis into account (I’ve left in the discussion of the “aggressive behaviour” descriptor to give you some idea, and there’s more info here).

I wish to begin my appeal by noting that the condition from which I suffer, Bipolar Affective Disorder, is a fluctuating one. Many medical conditions or disabilities fluctuate without fluctuation necessarily being integral to the condition. In contrast, it is the fluctuation of symptoms/mood states by which Bipolar Affective Disorder is identified from the range differential diagnoses. The Royal College of Psychiatrists’ guide to Bipolar Disorder notes: “Bipolar disorder used to be called ‘manic depression’. As the older name suggests, someone with bipolar disorder will have severe mood swings. These usually last several weeks or months and are far beyond what most of us experience.” The World Health Organisation’s International Classification of Diseases version 10 states that bipolar “episodes are demarcated by a switch to an episode of opposite or mixed polarity or by a remission” – the sufferer’s moods switch between different states and/or asymptomatic remission.

In other words, it would not have been possible for me to receive a diagnosis of Bipolar Affective Disorder unless I experienced very different mood states from week to week or month to month. The way that I appear on a specific occasion such as a WCA is, by definition, in no way indicative of my mood state and severity of mood disturbance last month, or next week, or next year. Basing a decision purely on presentation at WCA without reference to the ESA50 and supporting documents will inevitably result in an inaccurate and unfair assessment and decision.

Bipolar has affected me for the whole of my adult life (I first developed symptoms around 11 or 12 years of age) and has severely affected my work life. At age 18 I obtained the grades to study at University of Cambridge but pulled out because I was too sick to cope with the pressure of an Oxbridge education. In 2000, I began training as a student midwife, but had a severe episode in 2001 and had to withdraw from the training programme. In 2002, I was treated successfully and from that point until 2010, I was fortunate to be in remission and was barely symptomatic. I worked continuously during this period and progressed well in my career. Unfortunately my symptoms recurred, mildly at first, around July 2010. I carried on forcing myself to work for many months, but the symptoms worsened until on 01/04/2011 I realised I was too sick to work. Since May 2011 I have been actively working with a Consultant Psychiatrist, trying different medications and attending NHS therapy, to try to address my symptoms but as yet my symptoms remain poorly controlled. As a result, the Occupational Health provider to my employer has informed my employer that I am very disabled by my condition (and indeed I receive DLA for both the care and mobility components) and that he cannot offer any realistic timescale for a possible return. As a result of this, my employer is in the process of dissolving my contract on sickness grounds.

I advised on my ESA50 and at WCA that I have Bipolar Affective Disorder and that I will inevitability behave differently depending on the mood state I am in. Not everyone with the diagnosis will experience the same range or intensity of symptoms. My condition has been identified as “Bipolar I” on the grounds of “serious impairment” to my functioning.

To provide a full context, my bipolar mood states are as follows:

–       DEPRESSION: When depressed I experience “psychomotor retardation” which makes it difficult for me to move and think. When very depressed I will spend the whole day in bed or on the sofa, because actions such washing or dressing seem too difficult to undertake. I also experience social withdrawal, a classic symptom of depression, and find it difficult to communicate even with close friends and family. I develop an aversion to the telephone, and if I do manage to leave the house it is not unknown for me to hide to avoid people I know because I cannot face talking to them. I often become preoccupied with thoughts of self-hatred, self-harm and suicide and can cry continuously throughout the day. EFFECT ON MY ABILITY TO WORK: Clearly it is not possible for me to work if I cannot get up and dressed (my partner assists with this where he can, but works full time so cannot always be around). Social withdrawal and an inability to stop crying mean that I would find travelling by public transport and communicating with colleagues nearly impossible, let alone strangers if in a frontline role.

–       EUPHORIC HYPOMANIA: Hypomania is a “high” which is not as severe as true mania. Although the basic feeling is one of euphoria, hypomania can cause me significant problems. When hypomanic, people’s decision making is usually impaired, because the person becomes over-optimistic about success or has “grandiose” beliefs about what they can achieve. In a hypomanic state I do not think to say “no” to anything and frequently overload myself with household, work or social tasks to a point when I don’t stop to rest or all tasks begin to be done badly. As I become higher, I stop sleeping (I have not been able to sleep at all, not even an hour, without the use of antipsychotic medication for approximately a year) and this can lead to irritability (see below) and yet further impaired, impulsive decision making such as overspending, bad relationship choices, signing up for commitments I cannot follow through, etc. When hypomanic, my mind races, other people cannot keep up with my thoughts because they jump around, and I talk too much and too fast (“pressure of speech”). I become very preoccupied with tasks I find interesting/pleasurable and neglect other necessary tasks. In this mode, I am the opposite of the socially withdrawn depressed phase; I become a “social butterfly”, quickly making excessive plans for socialising without noticing how much I have committed to. Socialising in turn feeds the high and makes it worse. EFFECT ON MY ABILITY TO WORK: When hypomanic, my ability to make good decisions, to manage money on behalf of an employer, and to communicate effectively at meetings or with the public is impaired. I can become easily annoyed if I am not permitted to work on tasks I am very focussed on, or take on many more tasks than I can reasonably handle, leading me to overwork or juggle tasks poorly. I could easily find myself subject to disciplinary action for being “cheeky” to managerial staff or customers, or for neglecting tasks others consider essential but I am unable to focus upon.

–       IRRITABLE HYPOMANIA. Again, a moderate “high” involving lack of sleep, but one whose base mood state is irritability. When in this state I experience hypersensitivity to noise, taste and colour. It can literally hurt me to look at brightly coloured things and noise in public areas is painful to the extent that I always have to carry a pair of noise-cancelling headphones with me. I feel agitated and become very easily frustrated when people do not understand where I am coming from. In this state I can, I am ashamed to say, be quite rude and aggressive to people in frontline positions, e.g. toilet attendants, ticket salespeople, bank call handlers, etc. I find it difficult to manage being with my own family, and often have to withdraw to a dark, quiet room away from television, conversation, etc. EFFECT ON MY ABILITY TO WORK: In this state I am a “loose cannon”. I cannot be trusted to respond appropriately to colleagues or customers and can pick fights or become easily upset or agitated if I have to work in a noisy environment, e.g. a customer service role or in an open-plan office.

–       ANXIOUS HYPOMANIA. Once more, an agitated high, but now the predominant state is anxiety. In this state, I find things such as official paperwork, having to make a phone call of any sort, filling in forms, attending appointments, travelling on public transport or meeting people I don’t know very, very stressful. I begin to become panicky very easily, and once a panic reaction starts I experience tunnel vision which makes things like crossing the road scary and difficult. When I have a full panic attack – which sometimes happens in a public place – I feel like I am going to be sick (sometimes I am), become cold and clammy, lose all control of my breathing which becomes fast and shallow, and feel like I am “going insane.” I worry that something terrible is going to happen (that my children will die or be abducted, that my partner will leave me) and find it very difficult to talk myself out of these beliefs. In this state, I also experience paranoid ideas, e.g. thinking that people can “see” me and what I am doing through my computer; becoming convinced that people I am communicating with by phone/text are not who they say they are and are evil forces that wish me harm; feeling that certain objects/colours/patterns are evil and dangerous and I cannot touch them. I become overwhelmed with terror and feel that I must get away from the “dangerous” thing/situation/conversation as soon as possible. EFFECT ON MY ABILITY TO WORK: In this state I find it very difficult to be around people at all. I experience people becoming annoyed with me, or offering what they probably consider constructive criticism, as frightening and belittling, and blame myself for being “rubbish”. Spending time with people I have never met is highly anxiety provoking and I am unable to handle any form of confrontation without panicking and/or crying. I become terrified that something awful will happen at work (for example, as a public sector team manager, I was coping badly because I was convinced one of the clients supervised by my team would do something awful that would be on the TV news and I would be sacked and publically humiliated). Obviously, paranoid beliefs that particularly occur when communicating via text or phone would cause significant problems in dealing with colleagues or customers and expose me to judgemental or stigmatised attitudes on the part of colleagues.

–       “MIXED MOOD” or DYSPHORIC MANIA: This is the most difficult state for me to deal with and occurs when I move from one of the forms of hypomania into true mania, but a distressed, not a euphoric one. I experience pronounced “psychomotor agitation” and find it very difficult to sit still. I pace, I tap and flap my hands and feet, I grind my teeth, I rock back and forth. I lose all ability to “relax” as my mind is also very agitated but this time is obsessed with the kind of thoughts I usually have when depressed.  My brain plays me snatches of music, just the same few bars over and over again, and because I cannot bear it I have to hum or sing other music; although I try to do this quietly I know it makes me look strange, but I feel I have no other choice. Mixed mood is recognised as the most dangerous of bipolar states, in that people have the thoughts of suicide but unlike a depression, they also have plenty of energy to carry them out. Indeed it is the state in which I feel most at risk, and am most likely to access Crisis/Duty Team services. In this state, my partner often has to remove means of harm from me, e.g. meds (I took an overdose in a mixed mood in 2001 and was lucky to escape organ damage), knives, etc and watch me to ensure I do not go outside alone. He therefore usually has to take time off work to supervise me. My last experience of this mood state was August 2012. EFFECT ON MY ABILITY TO WORK: There is no way I can work in this mood state.

The feedback from the Decision Maker makes it very clear that s/he has ignored all the evidence of my changing mood states and based his/her decision entirely on the observations of the HCP during one 45 minute interview on one particular day. The decision notes the information I provided on the ESA50, but discounts it on every descriptor. It also ignores evidence provided about the impact of the significant amounts of medication prescribed.

It is due to the highly variable nature of my condition that I gave several different possible responses to each question on my ESA50. At the WCA, the same of course applied; for each question the HCA asked, I inevitably answered, “it depends.” It was my impression that the HCP was annoyed by this, and she constantly requested that I provide an answer for “an average day.” I repeatedly responded that there is, for me, no such thing as an “average day”, as I genuinely do not know what mood state I will be in from one week to the next. It is difficult to see how I can have received a fair and accurate assessment when the HCP was clearly irritated by my reasonable and accurate responses. I was careful to explain very clearly before the end of the interview that what the HCP needed to understand was that it was the variability and unpredictability of my condition that was the most disabling factor of my illness.

Despite this, it is clear from the Decision Maker’s reasons that the only information that has been taken into account is the “best case scenario” recorded by the HCP. For every question, the information I provided about alternate mood states on the ESA50 and at WCA has been explicitly ignored despite the fact that it is literally impossible to extrapolate from a single interview how a person with uncontrolled Bipolar Affective Disorder will feel, think and behave on future occasions due to the inherently variable nature of the disability.

It is interesting to note that the HCP recorded that my “mental state examination was within normal limits” and made no reference to irritable behaviour with others. It does not appear to have been recorded anywhere that I actually saw two HCPs at the WCA. On both occasions I asked to take notes and asked to know the HCP’s professional credentials. Both HCPs refused to state their background, although the second one did permit notes in the end. However, I was only referred to the second HCP when the frustration and anxiety I was experiencing caused me to behave in a way which the first HCP said was so aggressive he refused to work with me. He was clearly upset at the fact I continually challenged him and felt I had behaved inappropriately – that is the very reason I ended up with the female HCP. And yet I still received nil points for irritable or aggressive behaviour, despite events that happened DURING THE WCA PROCESS. A clear example of how according to the HCA I am apparently two contradictory things (being aggressive and upsetting others, and having ho problems with aggression or inappropriate behaviour) at the same time.

I then cried throughout most of the interview with the second HCP. I was in a sufficiently distressed state that she stopped the interview at one point to ask whether I needed a break or some tissues. At the end of the interview, the HCP stated that she hoped things improved for me soon, “especially as you have children.” THIS IS A CLEAR ACKNOWLEDGEMENT ON BEHALF OF THE SECOND HCP THAT SHE BELIEVES MY CONDITION HAS A SIGNIFICANT IMPACT ON ME AND ALSO UPON MY CHILDREN. Despite this I have been assessed as having a mental state within normal limits and have been awarded awarded zero points for the assessment as a whole.

The decision letter suggests I consider applying for Jobseekers Allowance. I would point out that the HCP was made well aware that I remain subject to a permanent contract with my employer pending its dissolution, and that I remain subject to a medical certificate stating that I remain unfit for work. It is therefore impossible for me to apply for JSA since I am not unavailable for work.

I thank you for your consideration of my appeal.

Yours faithfully,

Charlotte

Enclosed:

Current medical certificate

Copy of DLA award letter

Patient Information Leaflet for quetiapine with the relevant side effects highlighted

Occupational health report which has led to current steps to dissolve my full time contract

Letter submitted to HCP regarding the effects of my condition on my daily life.

 

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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16 Responses to I appealed – and I won!

  1. JuliesMum says:

    That is brilliant. Well done!

  2. tigtigs says:

    Well done!! I am so impressed by your document, it must have taken ages, and if you’re not feeling well that is so hard. Really impressive!! I would love to know which side -effects , if any, you get form Quetiapine. I have put on a lot of weight very quickly, as well as feeling very sedated in the mornings. Love to hear from others too if you have similar problems?

  3. ER says:

    Well done. Having Bipolar myself, I would argue your point that Bipolar I is the ‘more serious form of the illness, on the grounds of “serious impairment” to my functioning, as opposed to Bipolar II, where functioning is impaired to a less serious degree’ is questionable – in my experience BAD, wherever you are on the spectrum causes serious impairment to functioning and is not really comparable, but well done all the same.

    • Hi ER, please remember that the whole point of the appeal was about my functioning. The diagnostic criteria for BPI is *significantly* impaired functioning (lost jobs, broken relationships, inability to parent, hospitalisations). In the context of being able to gain and sustain employment, people with BPI are significantly less likely to do this – therefore it is more serious in the context of deciding whether someone’s likely to be able to support themselves financially. Hope that makes sense! C

      • ER says:

        Yes I get where you’re coming from, just I think it’s dangerous territory to compare classifications of a mental illness as it can play into the hands of bureaucrats – one person therefore becomes more eligible for assistance on the basis of their diagnosis rather than what they can and can not do/achieve. In the States for example Cyclothymia is also known as soft bipolar and yet there is evidence to show although the severity of symptoms is seen to be less than BPI or II, it has exactly the same profoundly debilitating effect on people’s lives, sometimes worse as it is closer to rapid cycling Bipolar. I have and continue to experience the same impaired function you listed and yet I do not have a diagnosis of BPI. I would be interested to know where you found the resources though stating BPI is the most serious as I would like to read it, would you mind posting a link for me? Thank you and I hope I too made sense,
        E.

      • Well, they exist, and they do compare. You might not like it, but my truth is that my symptoms and the losses in my life are far greater than many of the people I know with a BPII diagnosis, and yet not as bad as some people I know with a BPI diagnoses. Personally I don’t see what on earth is wrong with me saying, “I have bipolar, but some people’s bipolar is worse than mine.” I have explored on this blog how in fact saying “we all suffer the same” when clearly some lose more and are more stigmatised is disingenuous and unhelpful: https://purplepersuasion.wordpress.com/2012/10/08/everybody-hurts-privilege-in-mental-health/

      • ER says:

        All I merely asked was if you could please post a link to your findings that BPI is classed as inherently more serious than any other Bipolar diagnosis. As you have chosen to ignore this I’ll take it that you do not wish to share. I empathise completely with your losses but if you read my post again I said nothing to diminish the impact of the said losses in your life, what I actually essentially said was that no one can ever know the extent to which one person’s life is affected and we should not judge one another by comparing diagnoses.
        E

      • ER says:

        And this is where I graciously bow out and suggest we agree to disagree. Just because these things exist does not make it right and I do not wish to labour the point with someone I would have thought would be on the same side of the fence. I wish you well.

  4. well done you for fighting back and getting the correct decision! im so lucky to have “passed” the medical first time around without having to go through the stress of appeals

    • Thanks, Moose! The mere fact that I can be scored 0 by one person in DWP decision-making and 15+ by someone in a different department of the same organisation (appeals) shows how ridiculous and inconsistent the decisions are. Really bizarre!

      C

  5. Well done on your win!

  6. Pingback: I appealed – and I won! | Mental Health, Politics and LGBT issues | Scoop.it

  7. Helen Pengelly says:

    I failed completely the first time too but the lovely people at Citizens Advice persuaded me to try an appeal & gave me an hour’s help to compile a letter adding up the points I should be awarded,eg for social problems,tiredness side effects,lack of anger control etc.It was great when they agreed at the tribunal & I am now getting emplyment & support benefit.

    • That’s great to hear, but I can’t help getting angry that so many of us are going through traumatic WCAs for nothing, since the decision is overturned based on the same information submitted right from the start…a horrible system.

      • Nick says:

        Its good news that you were successful. Don’t think I’m being pedantic but
        I’d like to just point out the fact that you didn’t ‘win’. No, your appeal was ‘upheld’. ‘Winning’ in a judicial setting means that you have to prove your opponents evidence was legally flawed or just plain wrong. Seeing as your opponent submitted no evidence to back up their decision all you had to do was show that your evidence stood an integrity test. Which it did! You already satisfied the requirements of the law before you went to the tribunal hence, your side was ‘upheld’. You didn’t lose anything and have to win it back again. If anything the victory was against DWP and their contractors lack of knowledge of the law. In effect the tribunal has decided in upholding your case that the procedures of the DWP and it’s contractors were/are unlawful in this case. So in effect you didn’t fail the medical at all. They just didn’t follow lawful proceedure by scoring you nil points. These distinctions are important as it places the burden of proof and evidence on the DWP and it’s contractors to show that you are not entitled to benefits. It is not for the claimant to prove that they are entitled. The law states that if you too ill to work you are entitled to benefits. It is up to the DWP to produce evidence that you are not entitled. The Secretary of state has the right to appeal the tribunal decision but very rarely is the case as it would have to be shown that the tribunal did not fulfill the requirements of the law on reaching it’s decision. I have no working knowledge of the law just what I’ve picked up over the years.
        Best wishes.

  8. It’s been really helpful for me to read this as I begin this journey. Thank you for sharing it.

    Sending you peace and strength.

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