When the stress of applying for disability benefits is dangerous to disabled people’s health…

Food for thought, as it were:

I went to Oldham foodbank last week.

One of the people I talked with there was Jeanette, 53.

Jeanette said she’d had a stroke in 2009. She used to receive Disability Living Allowance, but like most DLA recipients, was recently told by the DWP that her DLA payments would end and that she needed to apply for the Personal Independence Payment.

She applied for PIP and went for the medical assessment for PIP. She failed her assessment by just a few points. Her PIP application was declined.

I asked if she had appealed this decision – if she had asked for a mandatory reconsideration of the decision not to award her PIP and/or if she had gone on to file a full appeal.

“No,” Jeanette said. “It’s too stressful.” Specifically, Jeanette was worried that the stress of filling in appeal forms and sourcing more medical information would lead to another stroke. “I’ve got to think of my health,” she said. “I just rely on family and friends to get me around…since my stroke, I’ve found it bloody hard to walk… up and down my right side it’s affected the right side of me and the speech, that goes, doesn’t it?”

This is a common story, as many people will know. I can’t tell you how many sick or disabled people I’ve talked to over the past few years who decided not to apply for disability or support benefits, or to appeal negative decisions that they might successfully have overturned, because they were too unwell to cope with our dysfunctional, ridiculously bureaucratic and stressful benefit application and appeals processes.

In other words – people are too unwell to pursue the support that we are supposed to have in place for people who are unwell. Anyone with experience in this area knows this, of course. People know that government separates people from their benefit entitlements by presenting them with a series of soul-destroying bureaucratic hurdles.

Sure, people can try and find welfare advice and support, but often, that’s just another challenge that people could do without. So they do without.

85 thoughts on “When the stress of applying for disability benefits is dangerous to disabled people’s health…

  1. The bureaucracy and dysfunction is in-built in to the system to make it as difficult as possible for people to claim any Benefits, and deter them from making a claim.

    • Bloody right. Good thing that the shadow work and pensions secretary isn’t caught up in some major bloody thing that diverts even more attention away from the realities of trying to navigate these nightmares…oh wait

  2. Kate.

    I appealed my ESA desicion & was placed in the WRAG & the “Welfare Rights” people who represented me at the tribunal wanted me to appeal that desicion.
    Softer going through almost a year of total Hell being threatened to be kicked out of my flat etc etc, I decided not to appeal the desicion.
    I was told it could mean that I got placed back on the lower rate while waiting for the appeal & whose to say I lost that appeal & ended up back at square one, not even being able to buy a pint of milk!

    The first time I took them all the way but, I didn’t want the stress of going through all that crap again. The only reason I appealed the first time was due to having the support of a very loving family!!

    The whole system is made as stressful as possible by the robots at DWP so people get so stressed by it all that they don’t appeal, I feel very lucky, I had support from my family. My heart truly goes out to those who have no family to support them. That is exactly why so very many just give up which is exactly what this barbaric government want you to do!!!

    Yet again, I’m so very embarrassed & very ashamed to admit that I’m english!!!

    • I get closest to losing it when I have to ring the DWP. One guy I wrote with for this site – they did his mandatory reconsideration for PIP before he’d even requested it and had the wrong date for the decision they made. I think they may have confused his records with somebody else’s. Nobody would listen to reason on this. I don’t think they’re familiar with reason as a concept.

      • I don’t think reason is even in their vocabulary Kate!!!
        In fact, I reckon the electrical engineers this government used for programming the robots at the DWP forgot to put in the word “reason” in the programming software when they downloaded the updates on all the robots who work for them!! 🖒

        • I can’t remember if I told you Kate but, at my appeal, I had just finished telling the judge how i was on the breadline & was struggling to buy even a pint of milk when, the robot from DWP sat next to me said: ” if you’re as bad as you claim to be mobility wise, why cant you pay for taxis everywhere you need to get too”
          And this, is exactly what everyone is up against. They are not of this world Kate!!!!

    • Ritchie Ask any presenting officer if he was there at the assessment or at the decision also ask him what medical qualifications they have? Ask when they first became involved with the case? A reply asking why do you want to know might indicate they were only given the case at short notice.

      • Terminator, many thanks for your comment!
        It means alot my friend!!!

        As i said I went through almost a year of hell after working for 33yrs of my life, I’ve just turned 50yrs old & due to “Degenerative Disc Desease” in my back, a very bad car accident 2yrs ago on my way back from work on the M1 where a car rammed into me from behind, I had to be cut free from the car but this did yet more damage to my back, I can no longer walk very far without being in total agony & am in pain almost 24hrs per day. This has ruined my life yet I try to carry on as i refuse to be beaten by this. It’s only pain afterall. I haven’t slept in a bed for a year as my whole back goes into spasm if I do! I have to sleep in a recliner chair in a certain position to ease the pain.
        I just find the total system very very wrong & set up to make people that need it the most just give up as they’ve totally had enough & can no longer cope with all of the stress that it brings.
        People mention scroungers! yes, there are people that play the system but, the genuine ones lose out & the cost to this so very corrupt government, don’t even come close to the cost of the very many tribunals they lose upon appeal!!

        The whole system needs looking at!!!
        Disabled people commiting suicide as they don’t see away out when found “fit for work” when they obviously aren’t!
        So many genuine people giving up because the whole benefits system is made so difficult that the genuine people just give up due to all the stress of going through a terrible system!

        I don’t have the answers my friend but, one answer I do have is, get rid of this inhumane government & put our PM in prison for her many crimes against humanity!
        Replace the DWP robots with humans that have actual feelings.

        I know it may not help but, it’s a start!!

        Take care
        Ritchie

        • Yet #stayinlabour are totally silent on this issue. Where is their outrage about all this? It seems they care less about the sick and disabled than about who runs the Labour Party.

  3. And yet we have people trying to tell us that we don’t really have austerity here in the UK. If that’s the case, I’d hate to see what austerity really is!

    I think most people would be up in arms if there were significant numbers making fraudulent claims for benefits, but the simple truth is that there are not. Instead what we have is a system that is so labyrinthine, and and confusing that it could be mistaken for a creation of Kafka’s imagination. What it really is, of course, is yet another way of using the system to grind people down. It’s not really about saving money, as it won’t as many of these suffering people will have to go into hospital, and cost even more money.

    Instead of trying to appease the readers of the Daily Mail and UKIP voters, our politicians should be ignoring them, and instigating a caring and compassionate system. In the supposedly bad old days, access to benefits for the disabled were largely the gift of the medical profession, who decided who was sufficiently disabled or not, and not some goon working through some questionnaire on a computer with questions framed from a misuse of the psychosocial paradigm. I don’t see how a computer questionnaire can trump the evidence of the eyes – particularly when it’s the evidence of the eyes of a specialist doctor whose evidence it being refuted by a questionnaire. It might be that the person doing the assessment is in some way medically trained, but that’s only to give the private companies who employ them, (and pay them very well, talk about 30 pieces of silver…) some kind of legitimacy. In reality, anyone who can read and speak could do the job, but it wouldn’t look good if it came out that the ‘assessor’ was a former call-centre worker used to likewise working from an inflexible script that more often than not achieves the intended outcome of those who have contracted them in the first place, in this case, the UK government. That really would expose the whole thing for the lie we know it is.

    What all this must cost the taxpayer would be interesting to know, as I doubt that anything is being saved, but it is very much part of the Tory ideology to demonise the ‘lower orders’, and, as we also know, they have since Thatcher taken the long view, and are doing all this slowly in plain view, a death of many cuts to our whole system of social security.

    We need to remember the words of Nye Bevan, when uttered these words:

    “What is Toryism but organised spivvery? … No amount of cajolery can
    eradicate from my heart a deep burning hatred for the Tory Party … So far as I
    am concerned they are lower than vermin.”

    I think they should be painted large on walls up and down the land, with a reminder that he was the man who founded the NHS.

    • Padi, I wouldn’t even put vermin in the same league as this PM & her cronies my friend.

      I’ve said it many times before but, I just cannot understand why her & the many of her party are not currently serving time under her majesty’s pleasure for their very many crimes against humanity!!!

    • The reason we don’t have as much austerity as other countries is because the better off have not lost money. All the cuts have hit the poor and the money saved has been given to the rich in tax cuts. In other countries, cuts have affected everyone, not just the poorest.

      There was a programme on tv about how private companies can train people as paramedics, but without anywhere near enough training to competently do the job. So someone could have had a 3-day crash course and have the title of Paramedic. I expect the same can happen with other health professions. I think the government needs to tighten the rules about how much training you need to carry a certain job.

  4. Absolutely spot on, people are caught between the proverbial rock etc. causing them to shift deeper into poverty.
    Words fail me when trying to express just how I feel about the behaviour of the Establishment, its puppets and sadly many of the population of this island we’re forced to share.
    Brown envelope syndrome has created such a huge issue for me that DWP – immediate panic attack – resulting in whole body muscle cramps and sheer agony.

    • The paperwork is a shocker. Various computers just guff out letters and demand bank statements, proof of addresses going back years, medical assessments and god knows what else. It’s unreal. Nobody knows what anybody is doing. Stuff gets lost all the time. I can’t believe the letters or information that the DWP and councils etc demand are actually processed in any meaningful way. There’s no way these bureaucracies can keep up with their own demands for paperwork and assessments.

    • JayneL,

      This “Brown envelope syndrome”
      Is it a real thing then??
      I admit to not hearing about this before, I thought it was just me that shuddered with absolute fear & dread whenever I saw a brown envelope come through my letter box always fearing the very worst thing imaginable. Loads more stress, anger, more stress & more anger etc etc etc!!!

      • I’ve had anxiety problems with the post as well. I often feel like I’m going to pass out with fear, so I hold onto something when I hear the postman getting close to my door.

        Once, a company put a junk mail advert in a brown envelope. I was fortunate enough to see the postman carrying a STACK of brown envelopes, otherwise I would have freaked out when one came through my door!

        N.B. ESA medical letters/questionnaires come in a white envelope marked: “Important Information Enclosed – this is not a circular”.

      • This BROWN LETTER SYNDROME is real when the ESA72 used to have a contact on or after a date I used to get all nervous about two months before the date on the ESA72 then I noticed a phrase on the ESA72 and threatened them with a court appearance. The following year they removed the phrase thinking they could call people when they liked, I now look at reports for other phrases and will take legal action on them phrases appearing on reports.
        I think they now use white envelopes as well so advise people to read the back of an envelope before they open them. Addresses like DWP Belfast, or CDHA been the give-away signs.

    • I got a brown DWP letter today…burst into tears, freaked out completely. Opened it and it was a cold weather payment. I thought I would pass out with relief.. What a sick governments cause this fear to happen to seriously unwell people.

      • Karen.
        How very horrible for you sweetheart!!!!
        People who critisise saying we overreact when a “Brown envelope” comes through the door have obviously never been there!!!
        I read last week I was entitled to a cold wether payment in my area. I’ve yet to receive the payment, or even a letter!!
        I had 2 days with my kitchen being flooded & 3 days with no heating due to my pipes being frozen solid, had to have them all replaced after mopping the river in my kitchen! Then spent just under 4 days with no water due to the thaw that cracked all the pipes!!!

        I read in the local paper my postcode that said I was entitled to this cold weather payment but, I just daren’t ring the robots!!!!

      • Karen.
        How very horrible for you sweetheart!!!!
        People who critisise saying we overreact when a “Brown envelope” comes through the door have obviously never been there!!!
        I read last week I was entitled to a cold wether payment in my area. I’ve yet to receive the payment, or even a letter!!
        I had 2 days with my kitchen being flooded & 3 days with no heating due to my pipes being frozen solid, had to have them all replaced after mopping the river in my kitchen! Then spent just under 4 days with no water due to the thaw that cracked all the pipes!!!

        I read in the local paper my postcode that said I was entitled to this cold weather payment but, I just daren’t ring the robots!!!!

          • For cold weather payment, you need to be on UC ESA or Jobseekers allowance and also be disabled or a few other criteria. You get £25 each time the temperature has been consistently at a low level for a certain number of days. You don’t have to claim it, it just happens.
            There is a website where you can see if your postcode is eligible during a cold snap…if it’s been cold enough.

          • Oh right, thanks Karen, that explains why I don’t get it as I’m just on normal JSA & not classed as having a disability.

          • Mad, isn’t it? Don’t they think you have a home to heat as well?

  5. And then they want to know why people are doing everything they can to put off the evil day when they have to go Universal Credit. Not applying for part-time jobs they could do, because it would mean going on UC. Not moving house, changing their bank, or even getting married. Because it would mean going on UC.
    You can thank Duncan-Smith and the hard-right of the Tory Party for all of this.

  6. Going slightly off topic, I have a Benefits related dilemma. There is a good chance that I am about to be offered some temporary work, but it will most likely be a 3 months contract. But if I sign off & break my JSA claim then have to reclaim in3 months time they will put me on to Universal Credit. It’s a really good company if you manage to become permanent, but it means doing low paid temp. contracts first before there’s any chance of a permanent contract. Also, don’t know if my health/general fitness is up to it. I often feel as rough as a bear’s arse in a morning & it usually takes me at least a couple of hours to start feeling human or to be able to face food. I smoke too much, have an hiatus hernia & upset stomach, am pre-diabetic, & have Borderline Personality Disorder (Stress/Anxiety/Depression etc.) Notsure what to do if I’m offered this job.

    • Hi Trev, further to my point above, I have known people make what might tactfully be termed a flawed application, in order to avoid Universal Credit. The Jobcentre have usually insisted on XYZ application which would mean Universal Credit for that person, and they haven’t wanted to do it. One of their little DWP tricks is to get JSA people to take zero-hours or part-time. Knowing that this will break the JSA claim, and if the jobs don’t work out they will have to come back on Universal Credit. A neighbour of mine waited 10 weeks without a penny from the DWP recently. He ended up in the foodbank. Luckily his landlord didn’t evict him, but it was a near thing. You’ll have to analyse the situation Trev, and do what you think best. 3 months isn’t all that long. If you think you might get something else, then you could risk it. But if it doesn’t seem likely, and it means going on UC, you might want to think again, or wait for something that lasts a bit longer.

      • I know, I’m in a real quandry about it. If I felt well & knew I could easily get back on to JSA, or on to ESA if it turned out my health wasn’t up to it, then I wouldn’t hesitate to give it a try because if I did get kept on permanent in the future it would be a really good well-paid job. But as things stand I’m in two minds.

        • Trev,
          Are you in a Live Service Area for Universal Credit or a Full Service Area ? Due to the further delays and changes to UC, since 1st January Live Service ( The half-way house ) UC areas are not taking new claimants onto UC. Currently it is all suspended, no-one knows for how long. So in a Live Service area, at the moment, you could leave JSA, and would have to go back onto JSA instead of UC.
          My local area is Live Service, so no new UC claims. But if you live in a Full Service Area, then if you close your JSA claim, it is permanent. You will then have to make any new claim under UC.

          • Well there you are Trev. Full Service, cards on the table. Only you can say what you think is best for yourself. And remember also, if you don’t complete the 3 month’s trial, for health reasons or whatever, you will be in danger of a sanction under UC for leaving employment. But don’t let me put you off. If it’s a good job and you want to do it, then by all means go for it, and get yourself out of the clutches of the DWP.
            If you have been targeted for the Work & Health Programme you’ll have to do that instead. So it’s something of a balancing act. Can you physically do the job ? Is it likely that you will be kept on ? Are you the only one being taken on ? How many positions versus trainees etc ? Hope this helps.

          • Thanks Jeff, looks like I’ve got a lot of thinking to do, but I’m not very good at making decisions, knowing me it will be spurr of the moment, but I’ll sleep on it before I ring them tomorrow.

    • But Trev, surely this job is better than going on the Health and Work Programme? They might sanction you if you don’t take a job of their choosing.

      Pretty soon, they will move you onto Universal Credit anyway, job or not.

      • The way things are going I reckon it could be another 2 years before I get moved on to UC. At moment it’s just new claims & existing claimswhere there’s a change of circumstances.Yes, it would enable me to dodge the Work & Health Prog. for now, but they could still send me on it later. I have no idea if my area (Kirklees) is ‘Full’ or ‘Live’ UC or not. I know some people have been put on it, others haven’t. I have to phone someone back in the morning about this job & speak to their Personnel dept. (at least they still call it that, not ‘Human Resources’, it’sa very ethical company). Also, this temp. Contract might be for night shifts too I think, which I’m not keen on. Why can’t I just win the bloody lottery instead?

        • Don’t you have to be claiming for one or two years before they put you on the Wealth and Hurt Programme? If you start a “new claim” under UC, you’re no longer in that category.

          • Yes in theory you would think so but they bend the rules to suit themselves, not sure if a 3 months break is enough to qualify in that respect, even though it would technically be a new claim, you might have to be signed off for 6 months to reset the clock, dunno. A few yrs ago they did something similar, sent me on the Work Programme not long after I had done New Deal, after which my claim had been wrongly closed & I’d had to make what was then called a “rapid reclaim”. Some woman at the New Deal place had incorrectly marked me as being absent one day during the final week when I wasn’t absent, so by time I got to end of week & had completed New Deal the Jobcentre had closed my claim!

          • I tried to post a reply, but I don’t know where it went.

            I said it’s dreadful that your claim was closed over one little day and I thought that would help massage the unemployment statistics.

          • Another time (in 2003) they closed my claim because I informed them I was going away on holiday for a week, so what was originally a cheap holiday became quite an expensive one. Then another time I simply forgot to sign on as I got the days mixed up, it was a nice day and I was out with a friend walking in the woods/countryside taking photos of interesting trees (like you do) and generally having a relaxing nice day I went down first thing the next morning and they’d closed my claim.

          • Yay! A fellow photographer!

            Jeremy Corbyn takes photos too. He photographs manhole covers. Reminds me of a friend who admires drainpipes as we’re walking down the street.

        • As for the Lottery, they should make the jackpot only a grand and have lots of them. That would share the wealth around a bit more.

  7. In a way of course it works. If you make claiming benefits as difficult as possible then a large number of people either won’t claim, or will give up in frustration.
    So that’s money saved either way in DWP terms. Plus they are ‘helping’ these people not to become dependent on benefits.

    • So really, in the warped view of the DWP they are actually doing them a favour by making it so difficult to claim ? Saving them from themselves as it were. Unbelievable stupidity, how do they keep getting away with it ?

      • They keep getting away with it Thomas purely because they’re being backed by this very CORRUPT Government my friend!!

  8. It’s always those most in need who find it hardest to meet all the conditions and jump through all the hoops. Meanwhile, those playing the system continue to play it because they’re experts at jumping through hoops. That’s why it’s a bad idea to make it harder and harder to claim.

    I believe that PIP should be paid on the advice of the GP. Simple.

    • Not sure I agree Alison. Depends what you mean by playing the system. Universal Credit is so nasty that it serves the DWP right if people try to dodge the worst aspects of it. Anyone would do the same.

      • Kyle, I agree with you that the system is so difficult that people do things they wouldn’t otherwise do. But not everyone CAN. Not everyone knows how. Think of people with learning difficulties, autism and even just a hot temper. It’s those who can’t that get hit the hardest, yet they are often the ones in greatest need.

        There is also a moral question about making it so hard that people lie or die. I think we should have a system that rewards honesty, e.g. if you’re honest and say you looked for work for 30 hours not 35, you shouldn’t get sanctioned. The principle is that you made an effort.

        • The only morality in Universal Credit is that it is an immoral system. Designed to punish and control.
          People are entitled to resist such a system any way that they can. In particular those who will not buy in to the zero-hours fantasy of work as some sort of supreme good. The ultimate cure of all ills, and the supreme reason for existence.

          • Some of the zero-hours jobs out there are really bad. At Sports Direct, you would be fired for being off sick for a few days. In principle, work is good, but we must do something about these abuses. It’s no wonder businesses complain they can’t find enough staff: they keep firing them for no reason! And they expect people to work in horrendous conditions. There was a programme on TV about apple-pickers living in caravans with no running water.

            Then there are commission-only jobs. The Jobcentre always has a few of those. I do question that. In practice, it means naive young people spend hours knocking on doors, without earning any money. I would call that an abuse.

    • Actually people with mental illness really need an impartial decision maker (and possibly other conditions like ME and Fibro).

      There are so many conflicting ideologies in mental healthcare, inaccurate diagnoses and some people with supposed personality disorders are widely despised by NHS workers. Then you get into the realm of inappropriate treatment and coercion to same. I can see many patients feeling pressured to comply at the expense of their mental health.

      Unfortunately that makes GPs and Psychiatrists very unsuitable to be in charge of deciding some peoples’ financial security.

      • They diagnosed me with a Personality Disorder and the treatment I received was abysmal. No sick note, but 2 yrs of medication followed by unsuccessful & traumatic psychotherapy, after which they couldnt get rid of me fast enough. My Doctor concluded that I am untreatable, said that there was nothing more the NHS could do for me, yet still refused to put me on the sick. Told me to leave his practice and go register with another surgery. I avoid the doctors as much as possiblennow and have no faith in them where mental health is concerned. And I’vetotally given up on any hopes of getting a sick note. I have to cope with claimng JSA and going through the motions of searching for jobs I can’t do, aren’t likely to get, and in many cases wouldnt even be able to get to – all for the sake of avoiding Sanctions and continuing to receive my poxy 70 quid a week. Can’t wait to get old enough to Retire.

        • I hear that. I was diagnosed with Borderline PD about 6 years ago by a CBT therapist, when only psychiatrists are supposed to diagnose PDs. I never thought it was the right diagnosis, and I asked for a second opinion. Two weeks before I was supposed to meet the psychiatrist for the first time, I received two letters. One cancelled by appointment with the psych. The other stated that he’d looked over the notes written by the CBT therapist, and agreed that I had BPD. Um…. How is that a second opinion?! He’d never even met me!

          In that same letter, he said that anti-depressants didn’t help people with BPD, so he was taking me off mine.
          PANIC. I’ve suffered from Major Depression and Generalised Anxiety since I was a young teenager. I’d had 6 major depressive episodes by that time, and had been on medication permanently for about 7 years. No way was I just going to come off of both my anti-D’s and see whether I fell apart, or whatever. Also, I was on 300mg/day of Venlafaxine (close to the max dose). Venlafaxine has a serious withdrawal syndrome, and I should have been weaned off of it over several months, not simply had my prescription stopped! Also had this incompetent patronising psychiatrist never heard of comorbidities? Both MDD and GAD are often comorbid with BPD!

          I called PALS. I made an oral complaint, and nothing happened, so I called them back. They suggested a written complaint, which would stay in his file for years, but warned that I might well make enemies over it. “Screw it!” I thought.

          I quickly had my meds re-prescribed by the psychiatrist, which was satisfying; however, he wrote to the CBT therapist (I got a copy of it a few years ago), telling her to discharge me immediately. I met with her and she told me that I was being discharged, and would never be seen at secondary mental health services in my city again, as I was a “difficult patient”. Ah, one of those code words that I was to become very familiar with in the next few years of having a BPD diagnosis. She told me that she’d be happy to refer me to the BPD programme, but if I said no, I would receive no further mental health help from the Trust.

          The reason I had been seeing her in the first place was because I was falling to pieces, and had been suicidal on and off. I decided to go to the BPD programme, as I wanted to have *some* mental health input from the NHS. However, I told her that I didn’t want the diagnosis put into my general medical file. She agreed. Alas, the next time I saw my GP, she treated me completely differently than she had for the previous few years. Talked to me like a 5-year-old. Didn’t listen to me. Wasn’t interested in my opinion. I asked whether a new diagnosis had been entered into my records, and she said, “Yes, Borderline”.

          I had to switch GP’s a few months later. She kept rolling her eyes at me and ignoring everything I said. My new GP (who is still fantastic) talked to me about the BPD diagnosis, and said that he was dubious about the whole idea of personality disorders, but as he was a GP he knew he wasn’t an expert, so he’d be happy to help me however he could, but didn’t really know what to do about my feeling that I’d been misdiagnosed.

          I went into the BPD Programme. No therapy. I’ve gotten 10 hrs in the past 6 years. No psychoeducation. Mostly cooking lunch, art therapy (i.e. colouring in mandalas, making ugly indeterminate objects out of clay), and hanging out in the smoking area outside the building with other service users. I didn’t even get a Care Plan, as I wasn’t sick enough to need one (also why I didn’t get any treatment). However, I was too sick to get therapy through any of the non-BPD services. None of them accept BPD patients. We’re scary, you know. Eventually I found group therapy through a charity, and individual counseling through another charity. Of course, I have to pay for those, although far less than for other therapists. Still 100 pounds a month, though.

          Over the years I’ve vacillated between attending the BPD programme a lot and not much. The only thing I got out of it was the crisis counselling (only 20 minutes per day, though – and they’d just cut you off at the 20-minute mark), and talking to other service users. Many of them told me that I really didn’t seem like I belonged there. Who knows, maybe I’m just a quieter BPD patient? (I’m currently being assessed for Complex PTSD, which makes *far* more sense. Both my charity mental health practitioners, and the pain psychologist who I saw at the pain clinic, think that CPTSD is a far better fit.)

          Anyway, over the years, the Trust got rid of the psychiatrists, psychologists, therapists, etc. from the BPD programme, and replaced them with occupational health assistants. Our hours were cut from 30/week to 10. Then they shocked us with a last-minute letter telling us that they were closing the programme and discharging us all to our GPs, about a month after we got the letters. ?!

          You know who you shouldn’t piss off if you’re a Trust? BPD service users. We took over our building, occupied it for 3.5 months, started online and in-person petitions, had marches and public engagement protests, went to Parliament, got help from 3 unions to organise, sent letters to every GP in our county informing them of what was happening (the Trust hadn’t informed our GPs that the programme was closing, or that we were about to be discharged back to them), gave interviews to tons of newspapers, on the radio, and on TV, and finally got the programme closure stopped. It turns out that the Trust hadn’t done any kind of Equality Assessment on how women (85% of the Service) would be affected by their action. HAH. We negotiated for them to keep the programme open for 6 years (which will end next year). They were really pissed about it. 😀

          However, they’ve basically stopped doing anything with the programme, taken all the knowledgeable staff out of it, and we’re stuck with staff who basically think we’re incurable, manipulative, and a waste of their time and they have no compunction about showing it.

          HATEHATEHATE. People with BPD have higher suicide rates than any other patients with any other mental health problem. 85% were abused as children, many sexually. Many have been assaulted, raped, or endured domestic violence as adults. A large number have/had substance abuse problems. How is it that they can just write us off? PDs can be mitigated with treatment! Many people with BPD who get effective treatment no longer meet the diagnostic criteria 10 years after their diagnosis.

          So yeah. Wow. I ranted.Sorry.

          I agree with your skepticism about having a patient’s own GPs/medical people/consultants judging fitness for work/eligibility for financial help. However, what if you could ask for some other medical person with experience and knowledge of your condition to assess you?

          • Wow. Thanks for all of that. That explains why the doc I saw couldn’t wait to get rid of me. It was a GP with a specialism in psychology who ‘treated’ me, and the diagnosis was ade vbetween him & a group of other GPS who I had alsoseen. I never got referred to a psychiatrist,but had seen one a few yrs previously (before getting the bpd diagnosis) &he was useless, just immediately wrote me a prescription for antipsychotics after speaking to me for like 3 mins. When it comes to bpd they don’t want to know, they just want you to go away. The Jobcentre don’t seem to take it seriously, are cluelesstto what it means & don’t even bother to look it up & readabout it on NHS or Mind websites etc. I ve found myself having to explain it over & over again to different advisers, & now their answer is to try bully me onto yet another back-to-work scheme called the Work & Health Programme. I’m dreading having to do it & have resisted so far but it becomes mandatory soon & I’ll get sanctioned if I don’t ori

          • My phone crashed….I was going to say that I would probably get sanctioned if I fail to complete the Work & Health Programme, if I start on it but then can’t handle it I’m likely to get stressed and storm out, then I’m screwed (or could be). This has happened before, I stormed off of the old Work Programme a few years ago, and just a couple of years ago they sent me on the Community Work Programme and I didn’t even make it through the Induction! Such schemes are unsuitable for people with things like Borderline Personality Disorder but the Jobcentre won’t listen, not surprising because it’s beyond their remit and I shouldn’t even be in the Jobcentre but the doctors won’t give me a sick note. Just 9 more years to go til I can Retire. I have to just carry on faking it on the dole until then come what may, whether I live on JSA or end up on Hardship payments. But thanks for sharing your experiences, it’s nice to hear from someone who understands.

          • Heather, I know it’s upsetting when you disagree with your diagnosis, but you must allow the professionals to write down what they need to write down in your notes. The diagnosis can be changed later.

            PTSD and BPD are overlapping conditions. Many therapists have moved to the PTSD diagnosis because it carries less stigma than BPD. My late mum had PTSD and my friend has BPD. Believe me, the symptoms are VERY SIMILAR.

            If a therapist is willing to deal with you as a PTSD case, you can discuss things in your past, e.g. sexual abuse, and how this influences today’s symptoms. If you feel like you’re being written off as a difficult patient, try another therapist. There are some charitable schemes that help to fund private counselling. My late mum just paid for it out of her own pocket. Although it was expensive, she really benefited from it a lot and her moods improved dramatically when she was having regular therapy.

            Just because you get labelled as a “difficult patient” does not mean you wouldn’t get a sick note. However, it may be that your GP judges that you are not sick ENOUGH for a sick note. In that case, you DO have a right to review. TRY ANOTHER GP! That’s what people did in the days when a sick note was enough. If one GP refused to provide a sick note, they would try another GP, at the same practice or even by registering with another.

            My friend has found some group therapy programmes for people with BPD very helpful indeed, so there are useful things out there. Don’t give up.

            I am not impressed with the old-fashioned practice of writing patients off as “difficult” or “resistant to treatment”. It’s a bit like blaming the patient if the medical profession has not yet found a treatment. Imagine if you had cancer. You could try radiotherapy, but the cancer might come back. The professionals wouldn’t suddenly turn against you. They would persevere, perhaps offering more radiotherapy, chemotherapy, surgery or even pain-management in palliative care. They never give up searching for new cures for cancer. The same should be true for BPD. If treatments for other patients don’t work for you, that’s because the medical profession has failed to find the right treatment for you. It’s not like you’ve done something wrong!

            Professionals are capable of taking a more generous view, whether they see the BPD diagnosis in your notes or not. It’s well known that there is unfair stigma out there, so you needn’t feel discouraged by it. I think you’re doing the right thing by pursue counselling that DOES work for you.

      • Well, Ab, I find it hard enough to attend my GP and hospital appointments. I don’t want to see any more people to claim benefits. You have to have a sick note from your GP to start a claim anyway. ATOS/Maximus are NOTORIOUS. I wouldn’t call them impartial. I’d call them completely incompetent. Why should taxpayers pay to train our GPs for 7 years and then fail to use their expertise? I don’t have any confidence in these so-called “healthcare professionals” from private companies. If they turn down genuine claims, who do they keep on benefits? Crooks from the mother country?

        • Yes, my thoughts exactly. Why have highly trained GPs who know us inside out and choose to listen to someone who has only met us for 45 mins. Crazy.

      • Anyway, Ab, it looks like you have relied on the NHS to protect you from the so-called “impartial decision-makers”. So how can you talk down the NHS in favour of the “impartial” ones who caused you so much pain? What is the preferred system you would like to see?

        • I got the feeling that Ab was thinking about having NHS health practitioners do the assessments, but not necessarily our *own* practitioners.

          • Well I am talking about OUR OWN practitioners who issue us with sick notes and prescriptions when they review our condition on a regular basis. A sick note is evidence that we not well enough to work. DWP do not need anything more.

            I don’t understand why people on this forum find this notion so difficult to understand.

  9. Rumour has it in my local party branch that Debbie Abrahams has fallen out with the leadership over benefit reforms. Where she has been a vocal critic of the Tory system. While the leadership has preferred a less dramatic approach.

  10. Just because a person had a stroke 9 years ago doesn’t mean they have recovered from the condition I had a series of strokes in early 2010 and still suffer from side effects of them now.

  11. Victories in PIP appeals reach their highest rate ever – but only a tiny number of claimants appeal. Here’s why | Vox Political https://voxpoliticalonline.com/2018/03/10/victories-in-pip-appeals-reach-their-highest-rate-ever-but-only-a-tiny-number-of-claimants-appeal-heres-why/

    Mandatory reconsideration should be abolished. It’s a major hurdle created to discourage sick and disabled people from appealing and DWP Decision Makers generally rubber stamp the initial assessment decision.

    In 2014, the Work and Pensions Select Committee, which provides oversight of the DWP, recommended that the Government pay sick and disabled people benefits while they appeal against incorrect ‘fit for work’ decisions. The DWP refused to comply.

    The problem with the DWP’s “well-established system of hardship payments, benefit advances and budgeting loans” is that they are all loans and must be repaid under Universal Credit.

    • As the courts found the policy for PIP to be unlawful (discriminating against mental health conditions), it’s no surprise that two thirds of the decisions resulting from it are found to be unlawful, too.

  12. I chose not to appeal too. I could not cope with the stress of a face to face which after much objection and intervention by both my advisor and my NHS team, ATOS finally accepted.

    In a paper assessment they refuted my claim that I cannot use public transport despite my written NHS evidence and denied me PIP mobility. I’m absolutely convinced that someone looked at it and said “well she couldn’t do a face to face, there’s no way she’ll take this to tribunal and if she does, we can call her a liar – prime candidate for refusal!! Hey hey, bonus time”

    I’m going to lose my car next time it needs a repair as I can no longer afford to keep it going. I can’t use public transport or taxis, can’t even walk from home so that’ll be me housebound. When I don’t go out for several days I turn inwards and often end up felling suicidal. Not to mention that my dogs need to be walked and I have to drive to somewhere where there are no people.

    There must be thousands of people who either are too stressed to appeal or who are terrified of losing what little they have been awarded. These figures are not included in any DWP ‘Look how satisfied all our customers are’ survey…

    They really do want us all to be dead, I’m convinced of it.

    • I’m so sorry to hear this. *support* to you.

      I’m only managing my appeal because I have A LOT of support from partners/friends/my mother.

    • These are dreadful cases.

      I am especially concerned about the application process for UC for the sick. It seems that even severely disabled people are being forced through a regime that is completely unsuitable for them.

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