A meeting to raise awareness of the challenges facing the 400 people living with multiple sclerosis elicited just five positive responses from the 80 public representatives invited to attend.
The information meeting for city and county councillors as well as Oireachtas members was scheduled for yesterday (Friday) morning in the city with up to 15 MS sufferers planning to show up to outline measures which the local and State Government could implement to make life easier with their illness.
“The central aim of this event was to make public representatives more aware of MS and how it impacts on those diagnosed and their families.
“We wanted to communicate how they can help improve the quality of life for people with MS through their role as an elected public representative,” explained Aidan Larkin, regional coordinator for MS Ireland.
“The response we got back is kind of shocking. We’ve had positive responses from five and five others who said they’re unavailable – that’s out of 82. We have people who would have had to make a real effort to be here, people with significant physical issues and we didn’t want to waste their time.
“Who are these people representing, if not the estimated 400 people aged between 15 and 90 who are living with this condition in Galway?
On Tuesday the decision was made to cancel the meeting and MS Ireland sent out an email to councillors, TDs and senators lambasting them for their pathetic response.
The small but vocal group of people who agreed to make their case planned to stick to three or four key messages.
Parking is a serious issue for MS sufferers as many have serious mobility difficulties. With the advent of the public bike scheme many of the disabled parking spaces have disappeared or moved to less convenient locations.
Nationally, a mobility allowance of €270 a month to assist people with transport was removed a year ago and never replaced as promised with an alternative transport scheme.
“Given that 54% of people with MS don’t work or have had to take early retirement due to cognitive issues or fatigue or loss of mobility, that cut really hurts,” insisted Aidan.
The plight of one Galway sufferer hit the headlines last month when Rosaleen Rafter from Kileeneen outside Craughwell revealed that she was being denied medication that cost a tender a day which was vastly improving her quality of life.
The former NUIG administration worker’s campaign to get Fampyra included on the long-term illness scheme so that it will be funded by the HSE has so far fallen on deaf ears.
After taking the drug for two-and-a-half years as part of a clinical trial, she must now cough up the €275 a month cost herself in order to maintain her independence, which is proving very difficult on a pension.
The manufacturer, Biogen, submitted a revised application to the National Centre for Pharmaco-economics (NCPE) for it to be included on the scheme last July and the HSE said it was currently considering the outcome of those talks.
“We understand that 60% of people with MS would be suitable to try Fampyra and an estimated 30% of those would likely be responsive.
“That’s not a huge group but it would be very significant for that cohort who could get some relief,” explained Aidan.
“We would have thought that public representatives would like to be informed about these types of issues.
“For a large number of MS sufferers it’s not their condition that is the most challenging; it’s their environment.”
West has lower cancer survival rates than rest
Significant state investment is required to address ‘shocking’ inequalities that leave cancer patients in the West at greater risk of succumbing to the disease.
A meeting of Regional Health Forum West heard that survival rates for breast, lung and colorectal cancers than the national average, and with the most deprived quintile of the population, the West’s residents faced poorer outcomes from a cancer diagnosis.
For breast cancer patients, the five-year survival rate was 80% in the West versus 85% nationally; for lung cancer patients it was 16.7% in the west against a 19.5% national survival rate; and in the West’s colorectal cancer patients, there was a 62.6% survival rate where the national average was 63.1%.
These startling statistics were provided in answer to a question from Ballinasloe-based Cllr Evelyn Parsons (Ind) who said it was yet another reminder that cancer treatment infrastructure in the West was in dire need of improvement.
“The situation is pretty stark. In the Western Regional Health Forum area, we have the highest incidence of deprivation and the highest health inequalities because of that – we have the highest incidences of cancer nationally because of that,” said Cllr Parsons, who is also a general practitioner.
In details provided by CEO of Saolta Health Care Group, which operates Galway’s hospitals, it was stated that a number of factors were impacting on patient outcomes.
Get the full story in this week’s Connacht Tribune, on sale in shops now, or you can download the digital edition from www.connachttribune.ie. You can also download our Connacht Tribune App from Apple’s App Store or get the Android Version from Google Play.
Marathon Man plans to call a halt – but not before he hits 160 races
On the eve of completing his 150th marathon, an odyssey that has taken him across 53 countries, Loughrea’s Marathon Man has announced that he is planning to hang up his running shoes.
But not before Jarlath Fitzgerald completes another ten races, making it 160 marathons on the occasion of his 60th birthday.
“I want to draw the line in 2026. I turn 57 in October and when I reach 60 it’s the finishing line. The longer races are taking it out of me. I did 20 miles there two weeks ago and didn’t feel good. It’s getting harder,” he reveals.
“I’ve arthritis in both hips and there’s wear and tear in the knees.”
We speak as he is about to head out for a run before his shift in Supervalu Loughrea. Despite his physical complaints, he still clocks up 30 miles every second week and generally runs four days a week.
Jarlath receives injections to his left hip to keep the pain at bay while running on the road.
To give his joints a break, during the winter he runs cross country and often does a five-mile trek around Kylebrack Wood.
He is planning on running his 150th marathon in Cork on June 4, where a group of 20 made up of work colleagues, friends and running mates from Loughrea Athletics Club will join him.
Some are doing the 10k, others are doing the half marathon, but all will be there on the finishing line to cheer him on in the phenomenal achievement.
Galway ‘masterplan’ needed to tackle housing and transport crises
From the Galway City Tribune – An impassioned plea for a ‘masterplan’ that would guide Galway City into the future has been made in the Dáil. Galway West TD Catherine Connolly stated this week that there needed to be an all-inclusive approach with “vision and leadership” in order to build a sustainable city.
Deputy Connolly spoke at length at the crisis surrounding traffic and housing in Galway city and said that not all of the blame could be laid at the door of the local authority.
She said that her preference would be the provision of light rail as the main form of public transport, but that this would have to be driven by the government.
“I sat on the local council for 17 years and despaired at all of the solutions going down one road, metaphorically and literally. In 2005 we put Park & Ride into the development plan, but that has not been rolled out. A 2016 transport strategy was outdated at the time and still has not been updated.
“Due to the housing crisis in the city, a task force was set up in 2019. Not a single report or analysis has been published on the cause of the crisis,” added Deputy Connolly.
She then referred to a report from the Land Development Agency (LDA) that identified lands suitable for the provision of housing. But she said that two-thirds of these had significant problems and a large portion was in Merlin Park University Hospital which, she said, would never have housing built on it.
In response, Minister Simon Harris spoke of the continuing job investment in the city and also in higher education, which is his portfolio.
But turning his attention to traffic congestion, he accepted that there were “real issues” when it came to transport, mobility and accessibility around Galway.
“We share the view that we need a Park & Ride facility and I understand there are also Bus Connects plans.
“I also suggest that the City Council reflect on her comments. I am proud to be in a Government that is providing unparalleled levels of investment to local authorities and unparalleled opportunities for local authorities to draw down,” he said.
Then Minister Harris referred to the controversial Galway City Outer Ring Road which he said was “struck down by An Bord Pleanála”, despite a lot of energy having been put into that project.
However, Deputy Connolly picked up on this and pointed out that An Bord Pleanála did not say ‘No’ to the ring road.
“The High Court said ‘No’ to the ring road because An Bord Pleanála acknowledged it failed utterly to consider climate change and our climate change obligations.
“That tells us something about An Bord Pleanála and the management that submitted such a plan.”
In the end, Minister Harris agreed that there needed to be a masterplan for Galway City.
“I suggest it is for the local authority to come up with a vision and then work with the Government to try to fund and implement that.”