‘Hospital is last place I want to go’
PEOPLE who use home dialysis machines are facing a ‘nightmare’ winter as energy costs continue to skyrocket and the threat of power outages looms.
The Irish Kidney Association has called for additional supports for those who choose to do dialysis at home, rather than in hospital where the process ends up costing the HSE far more.
It also reassures clients that they can’t be disconnected for non-payment during winter months if they register as ‘vulnerable customers’.
Rory Mackenzie, from Monard, Co. Tipperary, is one of those who fears spiralling bills may force him to receive his treatment in hospital, where a maximum of three weekly sessions is possible.
‘If I go into the [renal] centre it doesn’t cost me a penny,’ the 53year-old tells the Irish Mail on Sunday – the HSE pays for taxis to centres for those who receive dialysis treatment there.
‘If I can’t keep up with my bill payments, obviously I would go back to the centre, but I’m trying to stay out as long as I can for my health, and for my sanity really.’
Mr Mackenzie, who has been on dialysis since losing both kidneys to cancer in 2018, estimates that his four four-hour weekly dialysis sessions at home add around €1,000 to his family’s annual electricity bill. And with two sons in university and only his wife in full-time employment, financial strain is already mounting.
He changed electricity providers and began a new payment plan at the start of this year.
‘It was like €154 per month, but as the year has gone on I’m up to €375 per month,’ he explains. ‘They keep adjusting it and even then I’m kind of still behind on payments. I still owe a bit so they’ll probably put it up again.
‘Then we’ve got the increase in October so it’s probably going to go sky high. You’re virtually living one month to the next and you’re just juggling all the bills.’
Mr Mackenzie, who is originally from the Scottish Highlands, says any blackouts this winter will mean he would ‘have to juggle my days, my life’ around when he could do a session.
‘The stress of that future issue cropping up is basically a nightmare really,’ he says. ‘It’s one thing after another.
‘Shame I don’t have a kidney to sell,’ he jokes.
Karen Corbett from Swords,
Co. Dublin, shares the same concerns. She has been a home dialysis patient since 2017 after a kidney transplant she received in 2007 failed, following years of serious health issues including breast cancer.
She describes the home dialysis treatment as ‘an absolute game changer’. ‘I can do it when I want,’ Ms Corbett says. ‘I can have a drink, I can manage it myself. It just gives me so much control over it.’
The 47-year-old admits the three hospital visits a week when she first started dialysis ‘just wasn’t enough’. ‘I’d be going in [to hospital] needing oxygen
because I had so much fluid that my lungs would be filling up.
‘I was struggling big time and now it’s just so much better,’ she says, adding that her mental welfare is ‘100%’ better . ‘When I’ve had to do sittings in hospital, it’s a nightmare. I had to do it on their schedule, and I’d go from Friday to Monday without dialysis.’ She says returning to hospital would be ‘the very last thing I’d want’.
Ms Corbett estimates her family’s electricity bills have risen €100 a month in the last year.
Aside from the cost of running the dialysis machine – which filters blood through an artificial kidney before returning it to the body – users also have to contend with higher home heating bills.
‘In the middle of the treatment you always get cold because your blood’s outside your system,’ explains Ms Corbett.
‘I’d always just knock on the heating when I feel cold, but I don’t think I’ll be doing that this year. I think I’ll be suffering it out and just getting another blanket.’
She says if there were blackouts a few evenings a week it ‘would be a big problem’.
Her dialysis sessions are meticulously planned around her two children’s routines and her husband’s availability.
The Irish Kidney Association has said there ‘should be financial support to alleviate the extra burden of electricity to run a dialysis machine and related charges like heating costs, additional refuse collection charges and laundry’, and has called for clear messaging around blackouts for people medically reliant on electricity.
Irish Kidney Association chief Carol Moore says there should be a promotional campaign by electricity providers to encourage people reliant on electricity as a life-support system to register as vulnerable customers.
‘A lot of people aren’t aware that there are two registers [the Priority Services Register and the Special Services Register] for people who depend on medical equipment,’ she says.
‘For people who are very, very worried about being able to pay the bills or choosing between eating and doing dialysis or paying the utility bill, it’s very important to know that they can’t be disconnected for non-payment during the winter months if they’re on these registers.’
As of the end of last year, there were 2,026 patients receiving haemodialysis dialysis in renal centres, and just 54 home-based patients.
For peritoneal dialysis, which happens at home, there were
256 patients.