Tag: depression

DWP Pathways to Work Green Paper Harm: We Live In Fear

I just migrated from ESA to UC with LCWRA, I am unable to work due to severe mental health issues, including complex PTSD, complex personality disorder (ie. more than one personality disorder) and an eating disorder. It’s been so much fun reading about what Labour are planning to do to longterm sick and disabled people like me, because it has triggered and/or exacerbated every single one of my existing mental illnesses!

As I often say to my therapist, it is excruciatingly challenging trying to recover from an illness that makes you believe that everyone is out to get you and nobody cares about your wellbeing when the government has proposed cutting your means of survival and the resistance is almost exclusively limited to other longterm sick and disabled people. What makes it worse is that it’s a Labour government this time, ie. the supposed “good guys;” it is starkly different coming to terms with the fact that the people who are meant to be on your side are now targeting you as brutally as the “bad guys” always have, and frankly it has undone much of the progress I had made in dealing with my cPTSD. When you have been through trauma, it is vital to learn to trust people again rather than seeing everyone as “bad,” and yet Labour are supposed to be on our side, so is this not a perfect example of my trauma-injured brain being correct? In which case, how on earth am I supposed to recover when my supposedly skewed mentally ill view of the world is so perfectly aligned to reality?

The allegedly helpful “pathways to work” part of the Green Paper made me laugh; the DWP have literally never been the “good guys,” anyone who’s ever actually had to claim out-of-work benefits and deal with the system knows that already, so it is hysterically naive and out of touch for MPs to believe that the DWP will support sick and disabled people in any way. We live in fear of them, now more than ever.

Moreover, my eating disorder has been much worse since the benefit cuts announcement; as with most EDs mine is about needing to feel like I have control over something when everything else feels out of my hands. Needless to say, hearing that I am one review away from losing half my income has sent me spiralling, and my ED currently is worse than it has been in years. The sheer anxiety of waiting for that dreaded brown envelope to arrive summoning you to explain yourself and your health conditions (often invisible ones) to an unqualified DWP employee has increased tenfold now that the stakes have been raised so high, and you never know when or if it’s going to come, so you can’t live a single day in peace.

I don’t need to tell you how useless the NHS mental healthcare services are, so after they had made my mental health dramatically worse I gave up and went private; that is what I spend my UC on, and of course if the health element is removed from my benefits then there is no way I will be able to afford this healthcare anymore. One could argue that doing this to all the longterm mentally ill people who are currently paying for therapy would put pressure on the NHS once they are unable to afford private support anymore and go back to the NHS, but I disagree; I believe many of us will simply take our own lives at that point.

Only ignorant people would assume we’ll all flock back to the NHS, as if we’re paying out of our meagre benefits money for therapy for fun and not out of sheer desperation because NHS services are worse than useless, more damaging to our mental health than no therapy at all. Without the UC health element, we cannot access healthcare, and consequently one way or another we will probably die. We’ve heard Labour loud and clear with their constant demonising of those too unwell to work, the use of “working people” to explicitly exclude us, and their plans to cut off our means of survival; this government wants us dead, there is no other explanation. Words cannot express what a terrifying and painful experience living with that knowledge is. It would be horrific under a Tory government but to face this under a Labour one is unspeakably cruel. 

It Costs More to be Disabled, Whatever the Government Says.

A lovely Romantic image of IDS and Liz Kendall surrounded by lace and alert holding a defunct half penny coin.

We asked members and followers about their mental health disability costs, whether in work or in receipt of ESA, UC, PIP. This is what they told us:

  • “Paying for support the NHS no longer offers” 
  • “Needing to throw out £15 worth of food because voices have changed or ruined it some way”
  • “Needing cabs because public transport causes too much anxiety”
  • “Needing a lot of cleaning products because of OCD or eating difficulties”
  • “Wasting money on fresh food and then being too unwell to cook and buying takeaways is the big ongoing one. Paying for therapy so I can get therapy that doesn’t harm me. Paying for help with cleaning/organising/ although I don’t currently have any help with cleaning.”
  • “For a child – paying for assessments and reports and legal representation to get health and education needs recognised and met.”
  • “Paying £1000 for ADHD diagnosis and then running out of money to títrate properly because the GP wouldn’t accept shared care. NHS psychiatrist diagnosed ADHD but wouldn’t prescribe stimulants. The GP tried to internene to help me and the psychiatrist told the GP she didn’t want to prescribe ADHD stimulant medication to a woman in case they try to use the to lose weight. So years of lost income due to burnout and trauma of undiagnosed, then diagnosed but unmedicated and unsupported ADHD and complex trauma. The true financial losses cannot be fully calculated, but I am costing the state far more now, and will continue to do so, than if had adequate therapy that recognised the full extent of my trauma and helped me in a knowledgeable and supportive way, ADHD diagnosis, medication and support around executive functioning early in my life.”
  • “Throwing food away as I’m full of good intentions when I buy it but really struggle when it comes to preparing it due to depression and ED. Plus a lot of food goes past it use by date as I’m 100% reliant on deliveries. Carers won’t actually “cook” just microwave meals.”
  • “Paying for delivery charges from food to clothes, Amazon etc. currently can’t leave the building in my own let alone visit shops. (Full time wheelchair user living in an unadapted home)”
  • “Extra heating costs as in home all the time and can’t move around to keep warm as in in a wheelchair.”
  • “Taxi fares-hospital appointments, dentist, anywhere really. Last week I spent £60 on taxis just to get an Xray done.”
  • “Chiropodist at home.”
  • “Hairdresser at home which I feel really guilty about as “no-one sees me anyway)
  • Care alarm £30 monthly”
  • “Subscription to Amazon Prime as I can’t deal with random deliveries (PTSD ) and the prime videos provide a much needed distraction.”
  • “Monthly contribution towards my motabilty scheme power chair ( £100)”
  • “No energy to cook at times so dependent on expensive deliveries. I forget to put stuff in the fridge. I forget I’ve even bought stuff. I feel embarrassed even writing this stuff”
  • “I find the whole throwing food thing super distressing- voices telling me to think about starving people all over the world including UK underscored with food bank statistics and the scrounging benefit claimants rhetorics. The voices play a whole goddam symphony on this one!”
  • “Uber one for cabs, food deliveries, courier service etc because I don’t get out easily”
  • “Yarn and knitting stuff to stave off depression and anxiety and boredom”
  • “Therapy online that helps me”
  • “Support for cleaning/organising/divesting (hoarding) not covered by social care”
  • “Paying for taxis for partner to get home from work and back again during the day, (not including going to work and coming home) to provide support”
  • “Paying for takeaway when I’m too unwell to cook, or have been too unwell to get to the supermarket/place a delivery order for groceries so there’s no food in.”
  • “Paying for train travel to see family and friends then being too unwell to go that day and too overwhelmed to change the ticket (when that’s even possible).”
  • “Paying for the heating to be on a lot more so my energy levels aren’t worse than they would be without it (which would lead to a domino effect wherein my activity levels drop, so my mood and focus drops, so my ability to do other things that help kee p me well drops).”
  • “Years of lost income is something I always forget to include because work has been so impossible for me for so long due to inaccessible workplaces, inaccessible working conditions, inflexibility and punitive nature of the benefits system, and lack of access to good care under the NHS. Some of that couldn’t be helped, it’s just a feature of having several conditions that interact, but I am absolutely capable of some small amount of paid work, just not under the conditions that are made available to me, not without coming to harm and eventually burning out again and becoming more ill than I am now.”
  • “Delivered food because prep is not possible. Things having to be thrown away due to contamination”
  • “Debt – depression spending or manic spending, or spending related to attempting to acquire a lifetimes supply of non-perishable essentials in fear of the next review
  • *Paying for physical healthcare diagnostic tests or treatment because of diagnostic overshadowing ie all in your head, it’s ‘just’ anxiety, or you’re too ‘risky’ for a treatment by virtue of MH
  • “Paying for extra food or specialised because of ED”
  • “Paying for extra cleaning products or clothing because of OCD or ED”
  • “Paying for injury dressings”
  • “Paying for advocacy no longer available”
  • “Cabs because public transport causes panic”
  • “I pay £120 per week to see my (incredible, life changing) autism-informed ex NHS clinical psychologist. it eats all of my PIP, leaves absolutely nothing, but her approach, experience and expertise has helped me more in four months than CMHT has in 13yrs”
  • “Decent noise cancelling headphones to make going out in public manageable. Unfortunately the media would file this under ‘flat screen televisions’ in the list of things we shouldn’t be allowed to scrimp and save for.”
  • “I pay for physio. The NHS physio isn’t working. I even asked my orthopedic team who they would recommend and I pay for it. For some reason NHS physio isn’t fully trained in my hip problem.”
  • “I am also paying for some blood tests because some of my physical health is being out down as mental health issue. Even though previous bloods have come back abnormal”
  • “I’m in Canada, so maybe not relevant but Ive been priced out of treatment for my life long MH issues. Therapy: $200/session, Doc rec’d EMDR: $1000/month for 2 sessions. My disability cheque only covers rent and without effective treatments, working for the extra is a pipe dream.”
  • “I’m lucky that my therapist doesn’t charge extortionate rates but I pay him approx £300 per month. If I need to see a psychiatrist (which I do reluctantly), it’s £200+ for approx 10-15 mins”
  • “Paying for long term care such as therapy but also holistic treatments like theraputic massage etc to help with pain, stress.”
  • “Bath wipes, no rinse body cleanser, shampoo etc for when showering isn’t possible. Expensive compared to regular versions.”
  • “Healthy food is also really essential for wound care.”
  • “My disability costs me on average £400 more per month than someone without a disability. I’m not listing all the costs publicly. I don’t claim any benefits because I don’t have the spoons to work and fight for PIP”
  • “Stress induced psychosis spending on fixing things that don’t actually need fixing! Also heightened vulnerability to scams”
  • “Lack of energy or fatigue – results in paying people to do things which you could do yourself if you were not fatigued, depressed or lacked energy Also executive dysfunction. Causes massive costs – bank charges and fines just one example (not remembering or missing things)”
  • “Games because a game world makes sense when that world out there never does, Audible books so I can function around the house, VR and technology to leverage my affinity and allow me to exist, mobility scooter so I can leave the house without becoming non functioning.”
  • “Witnessed people having to throw food away eg as they haven’t been well enough to cook it, store it safely, forgotten to eat it, had no money to top up the electricity to cook it, or items eg washing up liquid to wash pans safely and no money to replace cooking utensils ….”
  • “Pain, psych and other meds not available on NHS so have to pay hundreds of extra costs in private prescription EVERY month. 4 months after sudden deaf, no help from NHS ! Have to get private consultation and therapy. Costing £1000s, now crowdfunding. CFS so need ready meals”
  • “£40 a week for a cleaner as I can’t manage it anymore £80 on a dog walker to help on my bad days, £50 on private health care to assist when the nhs refuses to treat me as too complex £160 a month chiropractic treatment That’s before easy prep gf food etc”
  • “Paying extra rent for a ground floor flat Being so ADHD/BPD I don’t even know my budget and what I’ve spent Paying for cabs because exhaustion Higher energy bills because I’m home all day Paying for massages because my body seizes up”
  • “Extra costs because you can’t shop around, can’t access discounts, can’t remember reward cards, get sold bad deals. I had a friend who ended up with two mobile contracts because the first network didn’t cover her area.. sold in person by same shop!”
  • “Clothes and shoes bought that don’t fit, but because you then have a bad patch, you comprehensively miss the return window.”
  • “My private prescription is £120 per month. The NHS says it will take over the prescription once I’ve seen their specialist – I’ve been waiting over a year – they say it will be at least another 6 months, maybe more!”
  • “£120 a week for psychologist counselling sessions as the nhs mental health team in Northamptonshire doesn’t know how to deal with me because of my physical health I don’t fit their regimented thinking. I get 1/4 of my pension (as I was too young to be ill) and pip”
  • “Not getting paid for actual work, either because you forgot to check if it was paid work when you agreed to do it, or because you can’t actually manage to invoice the work or expenses.” 
  • “Not getting an equivalent rate of pay to a non-disabled person”
  • “trauma therapy, supplements to help my brain and body cope with the strain of trauma and work more normally. Extra delivery charges when I can’t go out. Care charges. Cost of mistakes … getting scammed when vulnerable or impulsive”
  • “Transport is a big one. And food too, executive dysfunction makes it difficult to meal plan. Dressings, self help workbooks, cleaner, handyman and gardener, OTC painkillers and supplements, ear plugs, eye masks, weighted blankets and cushions, fidgets, sensory friendly clothes…”
  • “Daring to buy something new to eat[YUK ready meals] but too-long & stringy meat/poultry fibres/veg skins in it so choke when swallowing, or such strong YUK fake taste =gag, so bin it=cereal & cheese yet again for eve meal. Forgetting food [incl planning probs]so goes out of date.”
  • “Paying the rest of my wages because I’m only able to work part time”
  • “I use my PIP for private EMDR therapy. We’re presently processing traumatic events from my time in NHS mental health services”
  • “Standard open rail tickets, as advance tie you to fixed trains and you don’t know how fast you will be able to do a transfer.”
  • “Ready prepped things like veg because I can’t use a knife safely. All the different gadgets I buy that should help but turn out to not”
  • “Private assessment/diagnosis for complex dissociative disorder unobtainable via the NHS. Pet insurance (owner trained mental health assistance dog).”
  • “Spending weeks sorting out things because What they vs. What actually happens is as different as different gets.”
  • “My son is always throwing food out because it ‘smells off’ . It costs a fortune to replace.
  • Receive PIP. – electric bill because of long OCD-related showers. Also when depressed become too exhausted to get ready for bed so fall asleep on floor/with lights/heating on – dental treatment following not brushing my teeth when depressed – pre-payment certificate for meds”
  • “I’ve been paying for private therapy since 2018 because i gave up on the NHS after repeatedly being told that they couldn’t help me and on more than one occasion let me check myself out and wander out of A&E into the night after presenting myself as actively s**cidal”
  • “I’m not safe with a kettle due to SH, so I had a hot water dispenser which I accidentally killed last week and had to replace straight away. No waiting for the sales.”
  • “food goes to waste because i forget it exists. i lose things and forget i had them and buy more. i spend more than i should, perhaps on like hobby stuff because i am disabled and stay at home a lot, trying to find ways to stay busy and not let the brain worms win. someone else”
  • “Using gallons of hot water /heating to bathe a skin condition multiple times a day. Needing cotton clothes, which are getting rarer and more expensive Buying hibiscrub and dressings because my GP won’t prescribe them.”
  • “I end up throwing food away too – and beating myself up about it because food waste is “bad”. Can’t get an ADHD diagnosis because of how expensive it is and can’t face the hassle. Therapy is the big cost for me.”
  • “Throwing away food because I’m too distressed or confused to prepare it. Then ordering takeaway or delivery food. Replacing things that I have thrown out because I believe then to have been contaminated.”
  • “Therapy a big one as NHS doesn’t offer long term everything is in 6 or so sessions. Heating bills as feel the cold. Dressings at times. Ready meals and select foods. Private assessments for neurodivergence as 3-7 year wait lists. Private dentists as feel criticised by NHS dentists (even if available) making comments about acid erosion from eating distress history”

Current political and media messaging is suggesting that not only are people faking their conditions, but even if genuine they have no associated additional costs. The cost of living for people with mental illness/distress is no less pressing than the extra costs for people with physical illness or disability; benefits are essential to support a basic, acceptable standard of living.

Continuing austerity will simply mean worse lives and more deaths. It is most explicit in the growing presence of fascist groups, but on Social Security the consensus across the established political and media community is barely different: The society they envisage does not include us.