Three years ago I was sat on a hospital bed. I was 19 years old and I had to make a decision to either send my chronically sick wife home to fend for herself, or to discharge myself from hospital, risking my own health. I explained to the nurses that I was my wife's carer, and that without me she wouldn't make it out of the hospital, let alone survive on her own at home. All the nurse had to say was that if she was that sick, we would be getting help.
Since then, time and time again, I have been told the same thing by countless people. From both inside and outside of the welfare profession, I get told that there must be help available. Unfortunately, no matter how much it's repeated, it never comes true.
Before I continue, let me tell you a little bit about myself. On top of caring full time, I am also a university student and have a part time job. I care for my wife because I love her profoundly and I consider myself to have a wonderful life. Short of discovering a miracle cure for my wife's illness, I wouldn't change my life for anything.
Despite this, however, I know that it's important that I be honest about the pressures that come with being a carer. It is physically, and mentally, draining. Being a carer actually makes you twice as likely to develop a disability or long term illness yourself. It's a tough job, made all the more challenging by the lack of help available.
Student carers occupy a blind spot in welfare services. If you're in full time education, you can't access carer's allowance, even if, like me, you provide over 50 hours of care a week. This is why I have to work part time on top of my other responsibilities.
Even for those who can access financial support, carer's allowance is, frankly, measly at best. Carers can access £58.45 a week, under the pretence that they provide over 35 hours of care in that week. That's £1.67 an hour. But incomes are generally so strained in households with disabled members, that many young carers, of whom there are a tens of thousands, simply can't sacrifice this money in order to pursue education.
I'm fortunate that I can leave my wife for a few hours a week to work and attend a handful of lectures. Being able to do most of my degree work and paid work from home is the only way that I can manage. This is simply not possible for the majority of people in my position. It's important that you don't make the mistake of thinking that just because I can be a carer, study and work, that other people should be able to do the same thing.
Since I've been a carer, I've struggled with my mental health and have been getting increasing physically sick. All doctors can tell me is that it's because of exhaustion, and to take a break, but that's like putting a plaster on a gunshot wound. Most of the time, my life is completely out of control, living hour to hour, just trying to get through the days. Realistically I'm not coping. I am either falling behind at university, my wife gets sicker, or I lose control of household chores and our finances. This is not a healthy lifestyle, to always feel like you're trying to catch up but just falling further behind.
It's important to note that, actually, I'm not getting sick because I'm a carer. It's not even because I'm also a student. It's because I've been completely unable to access help.
There needs to be a serious reassessment of how carers are supported. Firstly, carers need to be given a decent amount of money to live off, whether in education or not. Carers save the country over £119 billion a year, so I don't feel like it's too much to ask to provide them with an amount which they can realistically survive off. Secondly, there needs to be a more proactive move to support young carers. They need to be supported through education and training, because currently young carers are being blocked from gaining qualifications and from potential employment, later in life.
Beyond this, however, there also needs to be a genuine concern for the wellbeing of carers. Charities go above and beyond in trying to ensure the wellbeing of carers, but the problem is just too big for them to deal with alone. The government's Big Society doesn't work on its own, and we can't all go on like this forever. Something real has to be done by the government, rather than the vague, optional, measures which they've been flirting with over the last few weeks.