Brian

The role of unpaid carer is often affected by political decisions which may be driven by ideology rather than an accurate understanding of the reality of people’s lives and the struggles they face. The current situation is a case in point, with carers now facing the added stress of being pursued for overpayments they may have unwittingly claimed due to issues with Carer’s Allowance.  The amount unpaid carers are allowed to earn from part time jobs has not kept pace with rises in the Minimum Wage, meaning that someone who did 16 hours paid work previously may have unintentionally exceeded the weekly earnings threshold, losing entitlement to the benefit and falling into debt – adding unnecessary anxiety to an already challenging situation. 

Although there has been some improvement in attitudes to caregivers, it feels like unpaid carers remain politically invisible, despite the amount of money they continue to save the taxpayer. In the early stages of our own journey, Kate and I found that there was more support and understanding when we expressed our needs for specific items or assistance – I’m not sure that the system is as generous today.

I feel for those who are just beginning their caregiving journey in today’s climate. The process of describing the effects of an illness on a person’s life is incredibly complex and highly individual – difficult to capture in a standardised assessment.

There is a larger issue here around devaluing the role of paid and unpaid carers. If we want to raise the standards of care, we must first raise the standing of carers. They deserve proper recognition for the vital work they do and the immense contributions they make to the lives of those they care for.

Kate

One of the key challenges in dealing with illness and disability is that it can be unpredictable and subject to change over time. We were fortunate enough to experience a benefit system that, while not overly generous, offered a degree of flexibility that allowed us to adapt to our changing circumstances. 

As I began, over time, to feel a little better, we found ourselves in a difficult position. We had fought hard to secure the benefits we relied on, but we knew that demonstrating any kind of ability to work could jeopardise that support. Fortunately, at that time, there was a fantastic provision in place that allowed individuals to come off benefits for a year with the assurance that they could return to the same rate if their illness resurfaced or if the transition didn’t work out.

Additionally, there was the Access to Work scheme, which enabled Brian to become my support worker. This meant that my return to work was really a joint effort – it was us going back to work together, as that was the only way it could have been possible given my circumstances.

The state support that recognised and accommodated the very individual situations people might find themselves in was invaluable. It helped us to avoid getting stuck and allowed us to explore new possibilities without fear of losing the safety net we relied on. I was lucky to experience some improvement in my condition: it’s important to recognise that many people are living with conditions which will never allow them to work. There are many ways of leading a happy and fulfilling life whilst living with disability. I do worry when the state targets sick and disabled people with the work imperative when it is clearly inappropriate.