‘People stare and you want to yell it’s not my fault, I have an illness’

BILLY O’MAHONY has lost all faith in the Irish health service.

Years of doctors dismissing his symptoms, blaming his swelling on obesity and now the Health Service Executive’s (HSE) refusal to fund his treatment for a painful, disabling disease has left him disillusioned.

Mr O’Mahony, aged 60, lives in Midleton, Co Cork. A maintenance electrician by trade, he still works but in a greatly diminished capacity.

He has 16 bandages on each leg and can’t move without help. The bandages must be changed twice a day. He suffers from primary lymphoedema, where the body’s lymph fluids don’t drain back into the blood system, causing serious swelling.

The condition can not be cured, only treated, and the best treatment is lymphatic drainage — which costs him more than €200 a week at a private clinic. His bandages cost him another €40 a month. He doesn’t get a cent back from the HSE.

He has been told of a German clinic where intensive treatment returns mobility. The HSE South has refused to give him a letter allowing him to avail of the E111-funded treatment. A number of Dublin-based sufferers have been sent there by their HSE area.

“It started off that my legs started to look queer. They were scabby. I went to the GP and he told me it was just my weight. I was about three stone overweight. I kept on going back as it was getting worse and then I went to a second GP and he said the same. At this point, my legs were covered in scales and were beginning to go black. They didn’t want to know. I was just told to lose weight. I tried and I couldn’t. The weight wasn’t going. I tried cycling and walking but nothing worked,” he said.

In June of last year, the skin at the back of his leg started to crack. It was as if he had chronic ulcers.

By the time he walked five minutes down the road, his trousers were drenched as fluid seemed to pour from the wounds. He was told it was because of his weight.

One night, he started to shiver uncontrollably and went to bed. He couldn’t get off the bed. His legs were numb and he felt like he was going to die. His family brought him to Southdoc, where he was told his circulatory system was seriously infected. Dr Pat Kennedy warned he could have died.

Billy’s daughter, Claire trawled the internet looking for information on her father’s condition. She came across lymphoedema. She raised the possibility with Dr Kennedy and he agreed with the diagnosis.

“It got so bad at that point that my belly button was sticking out as if was about to burst. All the fluid had risen up into my abdomen and groin as the bandages were containing swelling in my legs. I can’t wear ordinary shoes now and I can’t wear socks. They have to be ordered from a specialist shoe maker in Tipperary. My skin is like the scales on the back of a fish and often fluid comes out my eye,” said Mr O’Mahony.

Hospital doctors, said Mr O’Mahony, have had little sympathy for him. One doctor at Cork University Hospital gave him crystals to “clean his black legs”. He was horrified she thought he wasn’t washing himself properly. Another consultant “basically sneered at me” and told me that my ‘legs would have to be that big to take my weight’.

“I wanted to give up at that point. Nobody understood what was going on. It’s fierce embarrassing. People stare at you on the street and you just want to yell ‘it’s not my fault. I have an illness’.” He lives for hurling but can’t fit into standard seats anymore. He often has to ring the GAA looking for a seat in the wheelchair section. He doesn’t have a wheelchair. One GAA official told him to buy two regular seats.

Mr O’Mahony has since joined Lymphoedema Ireland. It was there he heard of the German clinic where 24-hour lymphatic drainage and physiotherapy has proved successful.

“It was incredible to meet people who were going through the same thing as me. Sometimes, I feel like such a nuisance and it was good to share experiences,” he said. “I can’t understand how the HSE can sanction Dublin sufferers to attend this clinic but they won’t send me. I don’t have a quality of life. It’s my only hope. I will pay my passage but I just need to get sanctioned from their end.”

A HSE South spokeswoman said a client requiring lymph drainage treatment is referred by their consultant to the CUH Physiotherapy Department, where the client is assessed and treated accordingly.

“As lymph drainage treatment is available in this country, clients will not qualify for this treatment under the treatment abroad scheme. This scheme is reserved for patients who require urgent medical treatment which is not available in Ireland,” she said.