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Dublin: 13 °C Tuesday 2 September, 2014

Opinion: Being ill is hard – having to fight for every basic human right is much, much harder

I am furious and disappointed that nobody bothered to tell me that I was not going to get Home Help. Or to explain to me the reason why.

Corina Duyn

IN EARLY APRIL, a request was made to the HSE for my Home Help and Carer’s Allowance. As of 20 May I still hadn’t heard anything about either of those applications. I rang the public health nurse who had made the application for Home Help on my behalf. Apparently she had received a letter on 24 April saying that my application had been refused. That is all the letter said: refused. She had assumed, understandably I think, that I would have received a letter too. Not so.

I am furious and disappointed that nobody bothered to tell me that I was not going to get Home Help. Or to explain to me the reason why.

Does the HSE think that it is a novelty to get Home Help? That it is easy to acknowledge that one cannot look after oneself any longer? Let me tell you it is the worst thing about being chronically ill. To acknowledge that you have lost your independence. To acknowledge that you need help with the most basic daily needs. To have strangers coming to your house. Does the HSE think that anybody in their right mind in Ireland would request Home Help and willingly go through this humiliating experience?

Fighting for every basic right

Being ill is hard. Having to fight for every basic human right is much, much harder. You hear heart-wrenching stories every day on the radio.

It feels a bit like there was somebody sitting in an office with a pen and decided to tick the box ‘refused’ without any further explanation necessary to the person who needs the support. Maybe this is not a fair assessment of the public servant, but that is what it feels like. In the past the decision was made locally, now it is made in office by someone who has never met the person in question and simply goes by a short assessment note.

Having a Home Help is not a novelty. It is an unfortunate necessity.

I’m furious that the Government for not looking after the very people who need the care of the State the most. I nearly screamed at the television when I heard the news that the Government was talking about €30 million being spend on a sports stadium in Cork, money given to the GAA. Don’t they have enough money already? Both Enda Kenny and Eamon Gilmore were so proud to make this announcement. They were glowing.

A deterioration in care provided by the State

In the meantime people are losing their medical cards, they don’t get Home Help; Carer’s Allowance is harder and harder to get; young children in wheelchairs that they have outgrown are being told that there is no money for a new wheelchair, or physiotherapy, or for speech therapy… or to attend a daycare.

Having people on trolleys in A&E is becoming the norm. Waiting lists to see a consultant are months, even years. It took me nearly two years, several letters, and degrading tests to receive a mobility scooter from the HSE. At least this time around they didn’t say that ‘a motorised aid would make me lazy’. That was a plus!

I am nearly 16 years into this ‘game’ of dealing with the so-called ‘health’ board, and have seen a deterioration in the care provided by the State.

I am not looking for easy handouts. I am too proud to be able to look after myself as best I can, but there are times that I, like many others, do need the support in order to take my meaningful place in society.

Corina Duyn is an author and artist living in Lismore Co Waterford. Her work is informed by nature and living life in the slow lane. See corinaduyn.com for more.

Read: Expert says disabled child’s home needs overhaul – council says there’s no money

Read: It’s been over a year – so what’s happening with the Mobility Allowance?

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