Posted in Accepting ME

The Long and Winding Road

Last week was the end of a long process for me and my friend myalgic encephalomyelitis.

In October I sat in front of a stranger from the Department of Social Protection and was assessed as to my eligibility for Disability Allowance.

But the story didn’t start there. In fact it started almost a year previously, in December 2012.

My last day at work, as a fully fledged tax paying Irish citizen occurred on May 18th 2012. As per Irish law because I left work due to illness and had worked up enough tax credits over my previous years employment I was entitled to a payment from the Department of Social Protection called Illness Benefit.

In early December 2012, just over six months on this allowance, a family member suggested I apply for Disability Allowance. He warned it was a long process and reminded me my Illness Benefit payment would be cut off in 2014.

I attempted brushing this conversation under the floorboards, hoping I would be better before my Illness Benefit payment ran out but my husband had other ideas. He reminded me of it daily and coaxed me into getting the paperwork and pushing the proverbial ball into motion. Which is exactly what I did in December 2012.

The forms looked harmless, there was a section about me and my illness, a section about my husband and his work, a section about our finances (it is a means tested payment) and lastly a section for my GP to fill out.

Along with copies of bank statements and my husband wage slips, the form was placed in the post and forgotten about until February 2013. When I received a letter stating I did not fall into the criteria for eligibility. According to the departments medics I would not be sick for another year and my illness did not restrict me from working. The end of the form acknowledged my right to appeal the decision via a consultants letter and I did.

My wonderful consultant placed her medical advice in a letter, laying out my limitations, the fact I was at the time sick for longer than a year and in her opinion would be sick for at least another year. She shared what my life had been like pre ME and what I was now capable of doing on a daily basis, my constant need to rest, my inability to exert myself, every detail was shared.

In June 2013 I received a second letter, telling me again, for the same reasons, I did not qualify for the allowance.

It left me baffled and led to my next step.

I contacted my local TD (member of parliament) and in a long letter shared my disbelief at the continued refusal by the department to grant me Disability Allowance. I had all the evidence they required, every form was correctly filled out, both my GP and consultant had provided detailed medical history, why was their rubber stamp refusing me the allowance, when I clearly fulfilled their criteria?

Thankfully I was met by a sympathetic ear and on my behalf he wrote a letter to the department requesting I be granted an oral hearing. An oral hearing is an outlet where my husband and I would sit in front of a stranger, working independently for the Department of Social Protection and be allowed to voice my limitations, the smallest details of my illness and basically put a face to my paperwork.

Months passed and finally on October 31st I sat in front of this man and told him every detail about my illness, my limitations and listened to my husband say “she is a different person to the person I married”.

Within six weeks a letter arrived advising the ruling had been overturned and I was in fact entitled to this allowance. Last week I received my first payment.

I understand when receiving any benefit from the state a process must be adhered to, I understand the persons eligibility must be scrutinised and understand caution needs to be taken as fraudulence exists. But what I don’t understand is why my first application was refused when it presented the exact same information I too presented during my oral hearing many months later. There was no change to my illness, no change to anything provided during that correspondence.

Thankfully I was well enough to fight, lucky enough to have my husband help me fight, lucky enough to have my local TD help me. What if I didn’t have the help I needed? Would I still be looking at letters of refusal, knowing my illness benefit was about to run out?