An open letter to Stephen Crabb…
With the shock resignation of IDS this weekend and all the spin that’s happened I think it’s important to set out my experience of Employment and Support Allowance, applying for the old benefit for Disabled People called DLA and my decision NOT to apply for the new benefit for Disabled people, PIP because of the existing exclusionary approach of this government towards those requiring help.
My disability is called CFSME. It’s been diagnosed by GPs and an NHS based tertiary service stuffed full of experts in the field. Problem is, it’s what’s called a fluctuating condition. That means that although I always have it and have symptoms of it, sometimes it’s worse and sometime’s it’s better. That makes it difficult to predict and even more difficult to manage.
When I say ‘better’ I don’t mean that I am ever well enough like I used to be when I wasn’t ill. My intellectual and physical functioning is always profoundly affected by this disease, so much so that I’m unable to work and most of the time is spent simply trying to keep the symptoms at bay.
That’s because there is absolutely no pharmaceutical intervention that has been developed to help this illness, all I can do is live with it, period. Imagine telling someone with MS that, or Cancer, or Parkinsons or Cystic Fibrosis, or Psychosis or Schizophrenia. For me, my illness is every bit as disabling as someone with any one of those illnesses.
When I was first diagnosed and after 6 months or so of being signed off sick from my then workplace, I stepped into the benefits system for the first time in my entire life. I worked without being welfare-dependent for almost 30 years before this happened to me and boy, oh boy, the timing could not have been worse. It coincided with the Coalition Government taking power.
Having been assessed by a Doctor in a Work Capability Assessment, I was told I’d be fit to work again in 3 months. That was an assessment that would be laughable if it hadn’t been so wrong and utterly dangerous, not to mention an indication of how the WCA system is not an effective or meaningful assessment of health.
You see, the WCA stepped in and gave me a prognosis of recovery that flew against every indication from the medical professionals I was seeing. It ignored what I presented in the medical evidence I provided for that WCA and said: “all you medical professionals, you are wrong, and I am right.” I was put in the WRAG group initially.
At this point the system of mandatory consideration wasn’t in play. I appealed. I knew, because I had been a healthcare worker myself and from what the health care teams were telling me, that there was no way I’d be fit to work in 3 months.
I’d already tried to work with CFSME and, as happens with the disease, the activity that I had to do made me far, far worse. I declined to the point where I was entirely housebound. With no treatment programme available to me I was not fit for work, not at all.
My GP agreed with me, the NHS ME Clinic agreed with me, the Doctor employed by the DWP didn’t. Eventually, having mounted a legal appeal and with absolutely no support in that process whatsoever due to cuts to funding at the Citizens Advice benefits advice services, 10 months later I won. I was placed in the Support Group but the damage to me financially and in terms of my health had already been done.
I lost my job due to my ill – health which was exacerbated by the activity and stress that I had to go through to apply and appeal for ESA. I immediately went from a salary that was fair for my work and could cover the costs of living in London to being immediately welfare dependent.
Because I live in London, I needed to apply for Housing Benefit. The Housing Benefit cap introduced under the umbrella of ‘needing to address the mess Labour left for us to sort out,’ left me with not enough money to cover the rent that a studio or 1 bedroom flat costs in London.
I couldn’t afford the rent on my home and I moved into what became apparent was a sub standard property that both my (Tory) local Council then refused to intervene with.
No TV Crew came round to follow what happened when myself and another tenant supplied photographic and video evidence of the appalling condition of the property. In my case being desperate for somewhere that would support my health, rather than detract from it, I applied to council housing.
I was told that despite providing all the medical evidence and evidence of the condition of the housing I was in, I was not in enough of a bad place in terms of my health and social care needs to get above a Band D in terms of an assessment for Council Housing. I was also told that I had to find a private landlord to rent from and it was down to me.
That was literally the worse experience I’ve been through since being ill. This entire blog has talked about the prejudice against tenants on housing benefit or being disabled in my area of London. The Council wouldn’t help, so I had to find one myself. It was a terrible experience and one that blows wide the notion that the private rented sector will help house people that are in my situation.
I experienced prejudice that was absolutely mind blowing. Don’t forget, the Council wouldn’t help, so I had to and I’m ill…….
The Housing Benefit cap doesn’t cover my rent so I now use money from my ESA Support Group payments of £500.00 pcm to top up the rent that the Housing Benefit Cap of £909.00 pcm does not cover.
ESA leaves me on the poverty line anyway. By Housing Benefit not covering the average costs of rent in London and there being no legal requirement for local Council’s to provide support to those who cannot be housed in Council housing but require private landlords to house them, I was left potentially homeless.
It was only by incredible luck after 4 months of continual searching and continual prejudice against me that I found somewhere with landlords that are open to help. I am still recovering from that experience physically.
3 years ago I was advised that I should apply for Disability Living Allowance. I did. I was told that would give me some extra funds to pay for things like a motor scooter so that I could better manage the amount of physical activity I use and in that way manage my ME symptoms better. Activity management is crucial for people with ME. A scooter would be enabling, it would make my life better, it would offer the possibility of some improvement in managing my symptoms too.
Lots of people I know with ME have these scooters and they say they really help. I need one, I am deserving of one, yet I can’t afford it because this system does not give me enough to live on anyway and is already taking money from me that I have to pay towards my living costs due to the housing benefit cut. I lose an extra £65.00 pcm that goes on rent.
I was eventually turned down for DLA because I was told that although I was disabled, I wasn’t “disabled enough.”
That’s a direct quote from the letter I received from the DWP Assessor.
I appealed that decision also. Eventually it went all the way to Tribunal. I had the date and time set but because I didn’t have enough money to pay for a cab there and back, I had to cancel it.
I’ll never know if I would have won that appeal also.
According to the Equalities Act, my long term health condition means legally I have had a disability for some time now.
According to the DWP’s correspondence about my ESA Support Group Payments, I am receiving a ‘Disability Payment.’ This is paid to me unlike those in the WRAG, because the DWP has accepted that I am disabled.
Yet according to the DLA assessors, I’m not disabled enough. According to the PIP criteria I won’t be disabled enough either. I’ve looked, it already discriminates, even before IDS’s resignation this week and the U turn you announced today. It’s not a good thing – I’m already not going to qualify. The changes that were already put in place between DLA and the migration to PIP already exclude me and it doesn’t matter how much medical evidence I put forward to the contrary, I still won’t qualify for essential financial help for my health condition.
I cannot put myself through this system again in applying for PIP. I get the message. I understand now.
It’s not about whether I deserve or qualify for these essential financial supports, ones that I always believed would be there if the worse happens, it’s not about whether I’m disabled or not, or whether I’m as much disabled as the next person, it’s about reducing the amount of money that people like me can live on in the name of economic recovery.
It’s about you thinking that my experience I’ve told you about here is unusual, or resolvable, neither of those things are.
I hate myself every day for not having a career any longer and having an illness that looks as if it’s disabling for life, but you, Stephen Crabb and the government that you belong to, makes me curl up inside in hatred of myself even more.
The system is screwed, absolutely f&cked and it’s got nothing to do with money. You are now part of a system that does not support those who really need it and put spin on what we need to survive.
Welcome to your new post,