Says his experience points to the insufficient care available for people with rheumatic disease
© Danette Dooley/Special to The Telegram
Paul Fitzpatrick in his hospital room at St. Clare's Hospital in St. John's on Dec. 8.
After 13 months on a waiting list and a nine-hour wait in the ER at St. Clare’s Hospital in St. John’s, a man from Conception Bay North was finally admitted to hospital on Dec. 2.
Paul Fitzpatrick, 47, has psoriatic arthritis and was desperate for medical care. The autoimmune disease causes swelling and deterioration of the joints and surrounding tissues including muscles, skin and ligaments.
Fitzpatrick’s rheumatologist, Dr. Proton Rahman, suggested the only way he’d be admitted to hospital would be through the ER, and that they should plan that approach for Dec. 15.
Instead, Rahman’s office called him on Dec. 1 and suggested he go to St. Clare’s ER the following morning, accompanied by Rahman.
The plan worked.
Now, after a week’s assessment at St. Clare’s, Fitzpatrick has been released from the hospital with numerous appointments for followup care, including a referral to a surgeon.
He says the health system is failing people with rheumatic disease, and that more rheumatologists and a centralized health care team are musts.
“It’s a living hell on Earth,” he said.
Fitzpatrick’s health was so bad, he had to give up work in 2003.
He’s had numerous surgeries, including two knee replacements, and needs operations on his ankle and elbow.
Everyday activities like washing dishes, brushing his teeth and slicing bread leave him exhausted.
“This disease has turned what I thought was life into, basically, abject existence.” he said.
Fitzpatrick says he’s grateful to Rahman and the team at St. Clare’s, including the nurses.
“They show such grace under fire,” he said.
He says the members of the physiotherapy team are his heroes.
“I’ve seen the physiotherapist. I’ve seen a psychologist. I’ve seen a social worker. I’ve seen the whole team … and I’ve found ways to reduce my own stress levels and the fatigue and exhaustion has weaned a little,” he said.
Dr. Sean Hamilton, Eastern Health’s chief of rheumatology, said that in the mid-1990s, rheumatologists had access to 12 in-patient beds at St. Clare’s.
Because of advances in treatment, said Hamilton — who was talking about the issue as a specialist rather than as a spokesman for the health authority — more people are being seen as outpatients and there’s been a decline in the number of people needing beds, and they are no longer available.
Hamilton said rheumatologists who need to admit patients have to make special arrangements. He said they’ve asked Eastern Health to dedicate four beds at St. Clare’s to their patients but that request has been denied.
“When we want to get patients in urgently, we just don’t have the means to do it in a very efficient manner, and for that reason patients don’t get all the treatment they deserve,” he said.
St. Clare’s used to offer a rheumatology health day program, he said, but it’s no longer available.
However, since September, an occupational therapist and a physiotherapist have been working on a pilot program with rheumatologists in St. Clare’s outpatient department, Hamilton said.
“We’re hoping to get six months out of it through funding from pharmaceutical companies. Eastern Health will not provide funding,” he said.
Brenda Kitchen, executive director of the Arthritis Society Newfoundland and Labrador, says a day program is essential.
She said the province must develop a co-ordinated strategy for managing the growing number of patients with rheumatic disease, and more rheumatologists and other health professionals need to be recruited.
“Unfortunately, the widely held perception of many people — physicians included — is that arthritis is not serious, that it is just aches and pains,” she said.
“This perception must change to ensure that people with arthritis get the care and information they need and deserve.”