Let me start by saying I wish I didn't have to
write what I am about to say. I have been fighting my condition for nearly 8
years now and during that time I have lost many battles. Many of you know that
having a long term condition is a daily fight and struggle between your mind
and your body. You fight pain, fatigue, low mood, lack of understanding, lack
of sleep and fear of the future to name just a few. But when other battles are
thrown into that mix it can make things so much harder to cope with.
Protests and
negative statements are made about our UK government on a daily basis about a number
of issues facing society. One of the most important issues, which have been a
topic of discussion for some time, is the so called welfare reforms that are
supposed to make those on benefits be better off in work. Our conservative
government want a better society where people earn their keep, I get that. In
fact I agree that there appear to be many individuals who are living off the
state when they are more than capable of working and contributing to society. I
also understand that it is often not that simple to just ‘get a job’ and there
are many barriers people have to overcome. Circumstances are different for
everyone but when it comes to living with a long term condition, staying in
work is not simple. A condition that presents new challenges with your health
daily mean finding a job or keeping employment where your employer both
understands and supports you is incredibly difficult.
The past few
weeks I have discovered the truth of the matter behind the theory that you are better
off in work. The truth is, for me and many others, you are not better off. Not at all, in any way. And this won’t be the case until
better financial and all round support is provided to those that are being put
on shuttle buses off to the job centre.
I have
always wanted to work. I have ambitions and determination like most people my
age. I have suffered huge set-backs in my career due to an illness I did not
ask for. I didn't want to take time out of work. I was forced to by my deteriorating condition
and a period of severe ill health. At my worst, I was claiming benefits,
because I had to leave my job, my condition was out of control and I no income
at all. I lived alone where rent and bills had to be paid. I didn't want to
'scrounge' off the state but it was my only option without a partner. I don't
have rich parents or a wealthy family. I
don't have savings and at the time I had nothing but debt from my time at
university. I was supposed to be starting a career that was supposed to justify
what I had spent on my degree. By the way, I paid my own way through university
with part time jobs and student loans. I
had no help from the state or wealthy parents to pay my fees but I didn't
qualify for reduced fees either. My career was intended to make all that hard
work worth it. But it was only a year after university that disaster struck and
my life changed forever.
I vowed to
get back to that career someday, convincing myself that once treatment was
found everything would be OK and would go back to normal. It's now 8 years on
and so much has happened. I have two artificial hips, an artificial shoulder
(and soon another one to match). I ran my own business for 4 years because I
had little confidence in being employed with a condition that varies day to day
and would require a lot of time off. I became my own boss so I didn't have to
worry about the restraints of my condition and letting people down. I worked
through two huge operations to have my hips replaced and several types of aggressive
treatments. I bettered myself by slowly regaining strength, confidence and finding
treatments that worked for me. This took time but I finally came to a place
where I felt able to work again and that I could have control back of my life.
In November
2014 I started a new career. A fresh start that, despite my degree and
experience of work, sent me back to the beginning. I wanted to work for our
health service because I felt it would be giving back for some of the amazing
support I received from them over the years. I was more than happy to learn new
skills and work my way up because I worked with some fantastic people and I
felt fully supported as an employee. Then my shoulder became a problem. All of
a sudden I was struck down again and unable to work waiting for my operation to
replace my shoulder. It was a set-back but didn't deter me, I just felt
incredibly guilty for letting others down. As soon as I could, I returned to
work and even celebrated a move up the ranks last year gaining more valuable
experience.
Then it
became all too much again. I wrote previously about the fact working full time
was having a severe negative impact not only on my health but on my life in
general. The exhaustion and pain on top of a full working day was a battle I
could no longer fight. I gave it one hundred percent and was incredibly
reluctant to admit defeat but, for my wellbeing and happiness, I made the
decision to reduce my working hours. This was an incredibly stressful time and
a difficult decision, not only because of my emotional distress at the thought
of my condition beating me, but financially I had to prepare myself. I
obviously did my research, there are plenty of things out there that tell you
working even a few hours is better than nothing and you will be supported by
your government. They tell you that you will be better off in work and rewarded
for your contribution to society. As I mentioned earlier, sadly this isn't
true.
I am
fighting a new battle with my local council housing department and The Department
for Work and Pensions, amongst others, for some help and support to simply top
up my income due to the loss of income now I have reduced my working hours.
Again, this was not my choice or hope for the future. I want to work. I want to
work full time and earn my own wage and be able to live a normal life. I want
to be able to save for the future and perhaps buy a house someday, but it's
becoming increasingly apparent that this may just be a distant dream.
After months
of letters, phone calls, submitting evidence of every part of my life (the
council especially have access to my bank accounts, payslips, medical records etc.)
I was told last week that I am pretty much entitled to nothing. Even though my
income has decreased substantially, I fall a few pounds above the threshold
that is set out by government for entitlement to help with housing costs. To
put it into perspective, I now take home less than £1000 per month and my rent
alone equals 75% of that. Whilst I receive personal independence payments, this
is mostly spent on my car costs each month because the government decided I
wasn't entitled to a mobility vehicle at one point. I had to lease a car
instead to be able to continue to travel to work, I live in a small town with
very little public transport and I need my independence in the form of
transport to be able to attend the hundreds of medical appointments I have per
year alone. On top of the lease payments I have to pay insurance, repair costs,
MOT etc and this is not cheap. However, if I had been awarded my PIP mobility
element from the start, I wouldn't have these payments to make each month. Late
last year I finally won my battle against the DWP where a high court judge
decided their decision not to grant me mobility payments was unjust and wrong.
Despite winning my case, I was in a difficult financial position still because
of being tied into a lease for the car I now have after my Motability car was
taken away.
In all honesty, I was better off
completely out of work and claiming benefits. I am in a worse off financial
position now than when I couldn't work at all. The council won't help me. The
DWP won't take my complaints seriously, when all I ask is for help to recover
the costs for the car I had to lease when they forced me into a corner
following their bad judgement. Everything I have coming in goes straight back
out and our government do not care one bit about this.
They have gone back on their word
to support people who want to work and contribute to society. It is perfectly
obvious to me why people remain on benefits, why should they work when they are
better off not doing so? But what about those who want to do something with
their lives? Where is our incentive or support when our income only just falls
over your threshold so you aren't required to help?
I don't expect everything to be handed to me.
I have worked hard pretty much all my life apart from a period of severe ill
health. I started work at the age of just 13 in a local hairdressers. I don't
expect lots of money to come to me for nothing each month. I, like so many
others, just need that additional bit of support to bridge that gap between
part time work pay and full time which I can no longer do because of a genuine
health reason. It's made me consider going back to full time just so I don't
have to deal with all this and worry about money. The stress on top of my
health issues is overwhelming and not something that will help my illness at
all. I know it would be unsafe and a hindrance to my employers if I went back
to full time because I struggle even working 25 hours a week. I have to sleep
every afternoon following work just to regain some energy. I am constantly
exhausted and I fear what would happen if I continued down that path and pushed
myself to the limit.
The worst thing is... Our
government and local council do not care. They have their targets and their
thresholds and tell us everything will be OK when it isn't. It's so far from OK
when someone like me is put into this position. I have seriously hit a low
point in my mental health this week because of all this but at least I have
people around me who care very much about my wellbeing and offer me support. I
fear for those who don't have this because having financial worries on top of
health issues is just not right or fair. What is happening to society that
those who want to try and make something of their lives are doomed to succeed from
the start because of cut backs and lack of support? Where is the support from
the government when we need it most? I will continue to fight as long as I am
able, but I fear this is a battle I don’t have the strength to win.
