I WAS FORCED to make a sudden career change 21 years ago when my son was born without kidneys. I became a carer and moved from a job I loved, which had good pay with a clear career path to one that had neither. I didn’t receive training or any upskilling for this new position. I had to learn on the job and not to be overly dramatic but the consequences of me not being a fast learner could be very serious, even life threatening.
After 21 years in this job, I can now say that I am a highly skilled healthcare professional. I have learned a lot on the job. For example, I can operate a peritoneal dialysis machine, manage a complex, dynamic drug routine, give sub cutaneous injections (although I hate doing that!).
I can do a set of obs, pass a nasogastric feeding tube (I also hate doing that), I can manage a Peg feeding tube and MacGyver my way round most error messages on those fiddly feeding pumps that come with them. I also know that 20ml of sparkling water is the best way to unblock those tiny tubes. Recently I’ve added management of a Percutaneous Nephrostomy to my skillset.
However, like all my equally skilled carer colleagues, I am not paid a fair wage for my work. If I am lucky, I am paid per week what others would earn in a day. And here’s the kicker, I am only paid if my partner earns below a certain threshold. Carers work well in excess of 40 hrs per week, have no statutory entitlements to time off, sick leave, holidays and are not protected by the Working Time Act. Is there any other professional with such a broad skillset who carries such weight of responsibility, who is only paid for their work if they are deemed poor enough to warrant payment?
I have been a loyal worker, there is no absenteeism on my record (chance would be a fine thing!), I have collaborated well with my medical colleagues. You could say I’ve been a real asset to the team. After 20 years of unblemished service my ‘employer’ rather than promote or reward me, decided to re-examine my family income to ascertain if I was still poor enough to be paid.
This review process started in January 2024, when I was asked to fill in a long, detailed form accounting for our family finances. I couldn’t find any exact figures online that would help me calculate our income in accordance with the Byzantine rules of assessment. I had to ring Citizens’ Advice – to disclose all my finances, then they put me on hold while they went off to consult some secret oracle that had my financial life in its hands.
Apparently, they have been specially trained on a top-secret calculator that couldn’t trusted in the hands of the public, or so the nice man on the phone tells me.
Carers therefore have all the responsibility of not surpassing the threshold, but none of the rights of access to the knowledge of how to make the calculation. The nice man also warned, while I wept, that any overpayment would have to be repaid, and if not, that debt would remain on my meagre estate after my death – no grant of probate would be possible without repayment. I was not reassured after that phone call.
I had no choice but to comply. So, I set about filling out the form and collating the mountain of supporting documentation. A small forest of paperwork. Then followed six months of correspondence where bank statements were returned to me with transactions highlighted in yellow for further clarification. One such highlight was a €20 Revolut payment I had made to a friend as my share of a takeaway meal. I had to root out the payment – correlate the dates and write an explanation. There were many of these letters.
In June, I was informed that I was indeed not poor enough to be paid the full allowance, just as my son’s health deteriorated and I was spending long nights sleeping on the floor of the hospital by his bedside. My workload doubled while my allowance was cut by roughly one third per week.
With another bureaucratic stroke of a pen, this year’s budget has increased the income threshold, and it turns out I’m now poor enough again. In an equally bizarre twist though, I will have to wait until next July to have my payment restored in full, at which stage I will have to go through the whole gruelling process again with documentation and the letters with the yellow highlighted transactions.
I do have to wonder how much it costs to carry out a means test on every carer. Minister Paschal Donohoe is quick to cite the cost of abolishing the means test, but has anyone ever sat down and worked out how much this whole department of balance sheet checkers armed with colour coded highlighter pens costs? How much pain, distress and humiliation it causes stressed-out carers?
What is the logic behind this means test? If you must give up full-time employment to care for someone you should get some form of payment, it’s not complicated and there is precedent. If I were an artist, I could qualify for a basic universal payment of €350 per week with no means test. Why not carers – I mean, it’s not as if we can’t provide sheaves of paperwork and medical reports to prove the level of care required of us.
Giving up the job I loved was soul-destroying, I felt such an enormous loss of identity. I am lucky, I have a specific skill set that has allowed me to recently return to work part-time from home. There are many carers with in-demand skills who could work from home around their caring duties, but they are locked out of the workplace by this meaningless means test. Many of them were educated at great cost by the state, only to have those skills excluded from the labour force by the bad luck of having caring duties and the bloody-mindedness of a bureaucracy that insists on keeping carers in a poverty trap.
What good does it do to isolate carers, restrict them from active participation in the workforce if they wish? Why make us dependant on our partners? Forgive me if this is too simplistic. Carers Allowance is taxable income, so how would it differ from additional income earned from work? Allowing carers to work would increase the national tax take and release some amazingly skilled workers to fill the many skills shortages in our economy.
Abolishing the means test would also redeploy some incredibly skilled public servants who could, with their laser-focused attention to detail and the swipe of their highlighter pens, slice through any excess spending in capital projects such as bike sheds or children’s hospitals.
I’m handing the highlighter to you Minister…
Ann Brehony lives in Galway and cares for her 21-year-old son Rory, who was born without kidneys. She also works part-time as a script editor.
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