Fighting for care
Heart of the Matter
CONOR GANLY Anne Marie Healy from Belmullet has had rheumatoid arthritis since the age of five. She is now in her mid-30s but since being diagnosed she has had numerous joint replacements.
She has had both hips and knees replaced, and has undergone surgery on her shoulders and elbows as well as having operations on her hands and feet.
At a recent public meeting to launch a car sticker campaign to open a rheumatolgy unit at Mayo General Hospital, Anne Marie spoke of her frustration at having to travel to Dublin for treatment because of the long waiting lists in Galway. She faced a six-year waiting list for a first appointment.
“I have to get up at 4am on the days I am going to Dublin. It’s a long journey for people in pain and takes about four-and-a-half hours,” she told the public meeting in Castlebar.
Anne Marie believes that her condition would not have worsened if facilities were available in Mayo.
“It’s a scandal the way people are being treated. We need a rheumatology unit in Mayo,” she said.
Mary Conway from Castlebar was diagnosed with rheumatoid arthritis ten years ago. She told the meeting it is a disgrace that people with arthritis in Mayo continue to be ignored. She also spoke of the ordeal of having to travel to Galway for treatment, wait for several hours to be seen in the clinic and then make the long journey home.
“People who are in pain should not be expected to do this,” she said.
Rheumatoid arthritis is a chronic (long-term) disease that causes inflammation of the joints and surrounding tissues. It can also affect other organs. The cause is unknown but it is believed to be an autoimmune disease. The body’s immune system normally fights off foreign substances, like viruses. But in an autoimmune disease, the immune system confuses healthy tissue for foreign substances. As a result, the body attacks itself.
The disease can occur at any age but usually occurs in people between 25 and 55. Women are affected more often than men, but the course and the severity of the illness can vary considerably.
Rheumatoid arthritis usually affects joints on both sides of the body equally. Wrists, fingers, knees, feet, and ankles are the most commonly affected areas.
The disease usually begins gradually with fatigue, morning stiffness (lasting more than one hour), widespread muscle aches, loss of appetite, and weakness. Eventually, joint pain appears.
There are over 100 different types of arthritis and these can affect people of all ages - from babies and toddlers right through to the elderly. Arthritis Ireland estimate that there are up to 5,000 children affected by arthritis in Ireland and about one in six Irish people has the condition.
Unfortunately, once a diagnosis is made, arthritis requires lifelong treatment, including medications, physical therapy, exercise, education and possibly surgery.
The local campaign group invited one of the country’s leading arthritis specialists, Professor Oliver Fitzgerald, to launch their campaign. He is a former chairman of the medical board at St Vincent’s Hospital in Dublin and is attached to the Medical School at UCD.
The Dublin medical establishment has often been accused of putting the capital ahead of the regions, so having the backing of someone like Professor Fitzgerald is a major boost to the patients and campaigners in Mayo. At the launch the doctor made it clear that Mayo patients need a unit.
“A rheumatology unit is urgently needed in Mayo and I wish you well in your endeavours to provide one,” he said.
Professor Fitzgerald said more rheumatologists and allied health professionals were needed so that people could be treated in the early stages of the disease. He said Ireland lags behind other countries when it comes to rheumatologists. The recommended ratio is one rheumatologist per 85,000; Ireland has one specialist per 186,000 people.
He said an opportunity exists in the early stages of arthritis to prevent joint damage, and he said he fully understands the frustration of people in Mayo at being deprived of this opportunity, due to the lack of rheumatology services.
“Early medical intervention and treatment of arthritis is of paramount importance in order to suppress the disease. Without it patients can and will be disabled,” said the hospital consultant.
There are 14,500 arthritis sufferers in Mayo according to the Mayo Branch of Arthritis Ireland. Evidence of the demand for more local services was demonstrated last year when Arthritis Ireland, with the help of the Health Services Executive, ran a renowned self-management course at Casltebar and ten other locations around the country.
The Arthritis Self-Management Programme was developed in Stanford University in the USA. It helps people manage arthritis more effectively day to day. However, each course, which costs €20 per participant, had just a small number of places. It proved hugely popular but this resulted in people being turned away and being put on another waiting list.
Because of the number of people waiting, Arthritis Ireland could not say when there would be places on its Castlebar course.
Mary Healy is chairperson of the Mayo Branch of Arthritis Ireland. Launching the sticker campaign, she said people with arthritis in Mayo must fight their condition with the added burden of having to travel for care.
“The country is awash with money yet there is none available for the most vulnerable in our society. Coupled with the lack of services we are now faced with a situation where people are unable to travel to Galway for treatment because their transport has been withdrawn by the HSE. Where is the compassion in all of this?” she asked.
Ms Healy wants the Department of Health to provide funding for a unit in Castlebar but in the meantime she wants the Health Services Executive to reinstate the transport for patients who have no alternative at present but to travel outside of the county for treatment.
“As a result of this they are, in essence, being denied treatment,” she said.
She urged everyone in the county to support the campaign by displaying the stickers on the back window of their vehicles.
“There are very few people who are not touched by arthritis, either directly or indirectly,” she said.
She also called on public representatives in the county to make their voices heard in the Dáil on the issue. “We elect them to positions of power to represent our needs,” she said.
* The sticker campaign was made possible as a result of funds raised from the Balla 10K Road Race. Stickers will be available throughout the county and can also be had by contacting 094 9254555 .
CAMPAIGNERS Brendan Conwell, (back left) organiser of the Balla 10K Road Race, who launched the car sticker campaign on behalf of the Mayo Branch of Arthritis Ireland, to create public awareness of the urgent need for a Rheumatology Unit at Mayo General Hospital. He is pictured in the TF Royal Theatre, Castlebar, with members of the Mayo Branch, Mary Healy, Chairperson: Helen McGrath Secretary: Sheila McNicholas, Rita Tolan, Treasurer and Teresa Maughan. Front row, from left: Mary Conway, Professor Oliver Fitzgerald Consultant Rheumatologist and Newman Clinical Research Professor, guest speaker, and Anne Marie Healy of the Centre for Independent Living. Pic: Michael Donnelly
