A Mullingar mother-of-one spoke this week to Westmeath Topic about her frustration with the Irish healthcare system and the frustration she faces, seeking to have her son properly treated. Her son has a rare condition which affects many parts of the body, including musculoskeletal and internal organs, and how getting proper treatment is very difficult.
Earlier this month it emerged that the number of patients waiting for operations or medical procedures is significantly higher than what appears on the HSE waiting lists published by the National Treatment Purchase Fund, which has responsibility for collating data.
RTÉ Investigates uncovered evidence that showed there are at least two other significant waiting lists which are not published by the NTPF, which have up to 40,000 patients awaiting treatment.
*Lorraine agreed to speak to Westmeath Topic only on condition that she could remain anonymous, because she fears that if she was named in a report, it could impact on her son and family.
“I have a sick child on a Crumlin waiting list for over two years and that was a referral sent in from my GP directly to the Rheumatology department.
We have heard literally nothing since except, ‘Your child is on a waiting list.’
“He is on another waiting list in Mullingar Hospital for a year now, and only about a month ago we received a letter asking did he still need the appointment.’
Lorraine then decided to apply for an appointment with a paediatrician rheumatologist in Temple Street Hospital.
PAID PRIVATELY
“We paid privately, which was much quicker and which opened doors into the public service for other services from the hospital. If we hadn’t paid for the private appointment, he would still be waiting to be seen, never mind being referred to much-needed other services. We tried to go from private to public and last June my son was put on the public waiting list in Temple Street, after being referred by a Mullingar pediatrician, or so we thought.”
“It actually didn’t reach Temple Street patient registration until four months later so it took four months for a letter to be sent from Mullingar to Dublin to get our child looked at, never mind actually getting services.”
It was only discovered when she rang to see when he would be seen. . “I asked how long we would be waiting and she said there was a 15 month long waiting list unless you are an urgent case which we wouldn’t be. Now we know what we are dealing with, we need to maintain what we have. It’s just about getting a routine appointment. It’s a problem across the country. I have friends everywhere, saying they are waiting for an appointment in Crumlin for over two years.”
THREE IN IRELAND
Lorraine said that to her knowledge there are only three paediatrician rheumatologists in the whole country. “Jack is in a lot of pain with his shoulders and back and has gastro issues that are related to it, as well as other symptoms. What makes things even more difficult is our circumstances because it is a rare disorder. Every time I meet somebody new, they have to Google what it is.”
Lorraine said that a family paying to see a rheumatologist privately is very costly. “You are paying out a couple of hundred euro for appointments. He has his care in terms of some of the public services because there are specially trained staff in some elements of his condition, in Dublin though all admit they are not experts regarding it. The team in Mullingar simply don’t have the skilled personnel to treat him.”
Lorraine says she understands the reluctance of parents to go public on the lengthy waiting times. “I know one or two people who have gone public but when you have children, you are fighting a battle every time you go into a therapy room. That comes on top of the waiting times they have already been subjected to, so it is hard to keep strong.”
DIFFICULT COSTS
Lorraine said going private was the only way her son got the help needed, but she admitted that costs have been difficult to keep up with. “I work part-time hours, only a few hours a week, because I have to attend so many appointments during the month. No employer would give me nine days off a month to go to Dublin for appointments. Our lives are affected in that way and we’re down in income because of it.”
The frustration and pain is clear to hear in the mother’s voice as she describes the pain of continuously battling to have her son seen and treated.
“We have to fight for our medical card, we have to fight for the doctors to understand the condition, we have to fight to get to see the doctors. We are trying to get on with a normal life and we know there are much worse off out there.”
“I know so many people who actually paid to go abroad privately because they can’t get the specialist treatments here. There is the Treatment Abroad scheme but many illnesses are not covered as the HSE claims they have the skilled teams here. Because we are not urgent cases I think that is why you wait so long, but that is not good enough,” she concluded.
There are many parents who would fully agree with the Mullingar woman’s standpoint.
