Friday, October 11, 2013

Mental Health Stigma - Our Failures Shame us All

Reblogged from Diary of a Benefit Scrounger:

I was sent this story this morning. The woman who wrote it had to be braver than you can imagine, just to share it here. But after the vile Sun headlines that upset so many this week (I won't link to it, it only increases the people who will be subjected to it) she felt she couldn't wait any longer to tell her story.

An individual story of pain, yet one of failure that is so common it should shame us all.


"In 2001 my 48 year old father died of secondary cancer the primarycause was a very rare form of kidney cancer.

At the time I was 25 and in a relatively new job 3 months straight out of Uni.

My mum was 42 when he died and considered too young for widows benefit so before we could even bury my dad DWP were already hounding her.

She was allowed two weeks to grieve his passing and then expected to find work despite being a lifetime carer to my dad who was already disabled before the cancer (a lorry fell on his back when he was 17, he was forcibly medically retired by the time he was 25).

Given my job and income at the time I was ready to stay at the family home and declare her my dependent if it got them off her back.

Her then doctor finally came through for her and signed her off as unfit for work. Sadly, by this point a lot of damage had been done and my mum was in and out of hospital for the next 18 months.

I didn't grieve my fathers passing at first because I was too focused on my mum. I was pretty much running on adrenaline.

At the same time one of my colleagues was prompted to be our line manager (LM) and on top of my personal experience was now being bullied by him. Usually in one-to-one meetings away from any witnesses.

At first I didn't even spot the bullying because it was mostly coming from my senior manager who was acting on the malicious lies of my LM. This on top of what I was also dealing with personally.

Eventually my mum met someone and it was shortly after this time that the bullying began to take its toll and the grieving I hadn't done caught up with me.

In the latter part of 2004 I had my first breakdown. I was being bullied on the phone (subsequently developing a phone phobia as a result) and I snapped. I have never cried like that in my life nor
since. I had no control over it and I simply could not make it stop. I was convulsing. I felt the real need to flee and so I did.

I walked out of my job with no intention of ever returning. I'd stopped caring by this point whether I lived or died I couldn't cope any more. Something had snapped in my brain, a flood gate had opened
and there was no stopping the tsunami of mental torture & pain I felt. I was making my way to the multi-storey car park with the intention of jumping off (no suicide guards at the time), I could see very little
because the tears which were practically blinding me and they would not abate. I walked around aimlessly not knowing where I was and not caring about the way people were looking at me. Not one person cared to see if I was alright despite the obvious distress I was in. I managed to get my self very lost into the backstreets and I still could not see well with the flood of tears still streaming down my
face.

At one point I did become aware of where I was and I stopped, brushed away the tears and then entered the building of The Samaritans.

I spent half a day there with them calming me, listening and trying to talk me down out of wanting to end my own life. It is no understatement to say that they saved my life that day.

I eventually went to my mums and spent the day with her. I was not left on my own after that and 9 months later I did manage to return to work.

I received a letter telling me our whole team had been centralised into IT out of education and I'd have a change of senior manager. At this point I thought this was a good thing because at this time I
still didn't know that how my senior manager had been treating me was based on the lies my LM had been feeding him (not that this condones his behaviour either). My LM was a master manipulator and had us all fooled even my colleagues.

With the help of Unison (because after that kind of treatment in the work place you do need a Union) we negotiated the conditions for my return to work and appropriate support.

It was all a wasted exercise. Within two months of returning I was back to being bullied but this time there wasn't the senior manager to hide behind. The bullying was the same as ever but this time direct
from the horses mouth; the LM.

I was still not fully recovered from my last mental health experience and my strength was not fully returned to me so I was more vulnerable this time and it took less time for the second breakdown to inevitably occur.

By 2007 I was again unfit for work. By 2008 ATOS had declared me unfit for work. With the help of my Union we negotiated my contract termination package as my employer stated they needed to replace me and would be terminating my contract.

You'd think with my being made unfit for work and loosing my job the bullying would stop. It did not.

For the whole of 2009 the bullying continued, now online. I bided my time collecting the evidence. Screen grabbing and printing it off to a file waiting for him to slip up and then one day he did, committed fraud by impersonating me. I then went straight to the police. They visited him at Somerset County Hall and gave him a warning.

It will come as no surprise that this is what it took to get the bullying to finally cease after eight years of it.

I still get the odd thing and as recently as last year, a nasty email redirected to me and again using my name fraudulently which I could prove and got the offending email account shut down. Otherwise I don't have much happen and it's not something I spend any amount of time
thinking about.

In between all this happening I was eventually on antidepressants (after the second breakdown). Over the years about 3 different types. Other than 6 therapy sessions I got no other support or treatment.

I begged my doctor for a referral to the NHS partnership for treatment but it was always phone counselling which with my phone phobia (my doctor knew full well of) never happened because of my anxiety with using the phone. I'd get on the CBT list and drop off because my doctor never chased it up or ensured I actually got the treatment. Everything I needed, I was denied.

For four years I was left to rot in my condition. I did the best I could to manage it, but like any ill health you do need medical intervention, there's only so much self medicating or self help you
can do on your own when your condition is severe.

I'd begun developing a form of agoraphobia when I was still in work (stopped going out for lunch, couldn't attend meetings on my own and eventually stopped using the canteen and always ate alone) and being left to rot in that condition as I was, it got severe.

The anxiety got worse as did the depression. After nearly four years and no light at the end of the tunnel I was probably at my worst. I stopped taking care of myself, I rarely ate and I'd stopped taking my
medication because in all the years I'd taken it I wasn't seeing the improvement I'd hoped for (I would like to add that with any medication it's important to get the supporting treatment which I didn't get and likely why on their own the antidepressants didn't work in my case).

The weight gain was also adding to my depression. My family seeing my deteriorating health made an appointment to see my doctor concerned at the way I was being left and how bad I had got. Little did they know that when on my own I was planning to end my life again and spending nearly all my time on suicide usenet groups and researching ways to end my life. I'd even begun writing my note.

One day I had nothing short of an epiphany and one I wish I'd had sooner, but sometimes it's takes going to a certain point in your life to see clearly; getting to the bottom where you either end it or drag
yourself out.

I contacted MIND, informed them of all I'd experienced and how I'd been left for years without proper support or treatment.

Whilst waiting for my assessment from them I took ownership of my health. I went fully vegan and increased foods I knew to be high in amino acids. I stopped researching ways to end my life and instead researched ways to improve my diet and use that as medicine. I lost nearly 5 stone in weight as a result.

In the time that followed I finally got the start of the help I so desperately needed four years before. I moved home, got a change of doctor and instantly got referred to Somerset Partnership for a home
visit.

I'd barely begin my journey with them when I was transferred from Incapacity Benefit to the WRAG (Work Related Activity Group) group of ESA. Now I should point out I had a severe phone phobia, agoraphobia, anxiety, depression and remained a suicide risk, but this coalition government were placing people like myself in the work capability group.

So just when my hope had returned that I could focus on getting better I was set back once again by this news.

I wrote straight away to them informing them it was quite impossible to do phone interviews with a phone phobia and that face-to-face interviews were equality out of the question when I could barely leave my home most days let alone travel eight miles on a bus to the local job centre.

To the credit of the lady handling my case she was amazing and supportive, but not typical of that Job Centre from my experience.

She spoke with my care support and even the Job Centre lady said to them I clearly should be in the support group of ESA.

I had eight months of hell from that point fighting the patently wrong decision. They wouldn't revise the decision so I entered the appeal stage expecting to have to go to a tribunal which terrified me given
my agoraphobia.

MIND were still very much in the picture helping me, making sure I had a care plan and putting me in touch with Shelter to help me with my appeal.

I had many interviews with Shelter and they helped me write up my appeal. I'd convinced myself I was looking at loosing everything and was even facing the prospect of being homeless. The thoughts of
suicide returned and hopelessness was creeping back in. I could feel the dark abyss sucking me down and I was back to not eating or sleeping.

I eventually won my appeal without needing a tribunal, but it was eight harrowing months and lot of wasted time that I could have been focusing on making the most out of my treatment as opposed to fighting a system I'd spent more than half my lifetime paying into.

My case, whilst unique to me is not an isolated case. So much time and energy was wasted, years where I could have been given the right support and early treatment that would have given me to the tools to be able to manage my condition and even be back in work. Instead I was left to rot in my condition, getting worse and now it will take as many years to undo all the damage that has been done and still with no guarantees at the end I'll ever be able to work again.

For me personally it's sad to have lost so much time and see my skills wasted. I've worked hard all my life, since I was fourteen and never known anything else. It was so alien for me not to be working.

Now, today the government is still attacking people with mental health as are The Sun. The stigma continues and the support is wanting.

They talk about making work pay and then they punish, and penalise.

Demoralising and demeaning people does not motivate or empower people to work.

Give people the support they need as soon as they find themselves out of work or sick, and the difference in getting people to a place fit to work will have lasting benefits for us all.

I've not gone public like this over my experiences before because of the stigma and way I have been treated. For a long time I had to resort to a pseudo name online to be able to even go online because of
the bullying from my ex-LM. I've been called a fake and a scrounger for claiming sickness benefit. So I've been reluctant to openly go public, but you know there comes a time when enough is enough.

1 in 4 people will experience mental illness in the next year and after the horrible headline from The Sun I decided to finally break my silence.

I will have depression for life now, as well as anxiety. It has been a mixture of support from my family, MIND, Shelter (who didn't have enough funding to remain in my town so please donate if you can) and
Somerset Partnership that I've made any progress at all and of course my own self determination.

The government have not supported me, they have not made work pay and they have punished and penalised me, yet in my last employment I was paying forced deductions of approx. £600. I have less than that each month now to 'live' on.

To be labeled by this expenses swindling government a scrounger when I struggle to buy food, to be told I am a something for noting after all the forced deductions I have paid, when ultimately all I wanted was to get better and be financially independent from the state is egregiously insulting to me and others like me.

I didn't choose to go from £2,000 a month to £300 a month. That is not a choice. If I'd had the choice my complaint of bullying and harassment would've been upheld instead of being the pointless lip
service policy it was and I'd still be earning 2K a month. The irony then that my employment was with local government and of all the jobs I've done it was THE worst.

Nobody chooses a life on benefits because it is not life.

Most days I'm afraid to check my bank balance because I can barely live and yet I get more than those on JSA. I've given up everything I can to ensure I eat the right foods to help manage my condition.

I don't have live TV so no TV licence, I don't drink, I don't smoke and I don't drive. I don't have a landline so no broadband. I have a PAYG mobile which I use as a wifi hotspot for my internet. I have done everything humanly possible to keep my outgoings for only the absolute essentials and to support my condition.

I'm currently in arrears with my council tax because I simply don't have enough money each month to pay them even more so now they've doubled my bill since the 20% change.

I've even had a benefit advisor look at ways to help me and she looked at my spreadsheet, admitting there was nothing more I could give up. I was also told I'd be better of stating I spent £27 on Sky than eating healthy (in light of my being a vegan) because they make an allowance for Sky but not for eating healthy (all of which I relayed in a letter to Jamie Oliver after his rant about the eating habits of those on low incomes).

Dealing with mental illness is struggle enough but it is perpetually compounded by not getting the right support and treatment, the right attitude from your own government and the tiny income your given which compounds your ability to cope and manage when you struggle to feed yourself, and pay for only the essentials. I've proved that by giving up everything deemed not essential and still I struggle to manage. 15% of my income goes on gas and electric placing me in fuel poverty the other higher percentage is food.

My aspiration is a simple one to continue getting the treatment and tools I need so I can safely manage my condition and eventually work for myself.

I have a degree in art and my work isn't half bad. I would like one day to work from home using my skills and selling my work online. Had I had treatment sooner I could've been doing all this already and
years ago.

Support & early treatment is everything.