Robert Joyce has been living with MS for 33 years and has been a vocal advocate for patient-involved research programmes both to help develop new treatments and lifestyle support measures.<\/p>\n
However, because many people living with long-term illnesses such as MS are on invalidity pensions, participating in any permanent or long-term projects could until now impact on their support payment.<\/p>\n
Under the terms of an invalidity pension, recipients are not available for work.<\/p>\n
Now, Mr Joyce has hailed a common sense decision by the department to reconsider invalidity pension protocols to support vital patient-involved medical research projects.<\/p>\n
People with long-term illnesses who are required for patient-involved research programmes can now be considered for participation once they notify the department in advance and brief them on the specific terms of the research scheme involved.<\/p>\n
If sanctioned by the department, involvement in the research programme will not impact on the individual’s pension.<\/p>\n
Mr Joyce said that the change will allow thousands of Irish people with long-term illnesses to support critical research projects into their specific condition.<\/p>\n
“I think the department deserves credit for this common sense approach,” he said.<\/p>\n
“In particular, Ronan Harney deserves credit because when I brought this problem to his attention in the department he took the time to listen to me.”<\/p>\n
Over 55,000 people in Ireland are in receipt of an invalidity pension.<\/p>\n
Many are regarded as potentially critical participants in research, treatment and even drug trials being undertaken by Irish universities and medical research agencies.<\/p>\n
Without the involvement of such patients, some trials are very difficult to complete.<\/p>\n
In some cases, Irish patients are being urged to get involved in EU-led research programmes into long-term illnesses ranging from MS to Parkinson\u2019s and Motor Neuron Disease.<\/p>\n
Campaigners warned that participation in such studies does not represent employment in any fair sense of the word.<\/p>\n
Mr Joyce was a key participant in an Irish study which aimed to help multiple sclerosis patients deal with cognitive difficulties and transform their lifestyles through the ability to remain in employment and manage their own care.<\/p>\n
The Irish study aimed to help the 60pc of Irish MS patients whose illness manifests itself through cognitive problems such as motor skill issues.<\/p>\n
Ireland has an estimated 9,000 people living with MS – more than 5,000 of whom have varying degrees of cognitive issue.<\/p>\n
The Galway-based study proved a great success.<\/p>\n
When a follow-on study was being organised, Mr Joyce was invited to participate.<\/p>\n
However, as a recipient of an invalidity pension, he decided to first consult with the Department of Social Protection.<\/p>\n
He was informed that he could participate but it might potentially prompt a review of his pension and eligibility.<\/p>\n
Mr Joyce immediately decided to highlight the protocol which, he felt, was critically impeding Irish medical research.<\/p>\n
“I think the department, and Ronan Harney in particular, deserve great credit for making a small change which could have such enormous implications for Irish medical research.”<\/p>\n
“This really is a good news story for anyone with a long-term illness who wants to play their part in helping others through vital research.”<\/p>\n","protected":false},"excerpt":{"rendered":"Robert Joyce has been living with MS for 33 years and has been a vocal advocate for patient-involved…\n","protected":false},"author":2,"featured_media":270418,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[14],"tags":[114,268,85,46,10075,266,267],"class_list":{"0":"post-270417","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-personal-finance","8":"tag-business","9":"tag-finance","10":"tag-il","11":"tag-israel","12":"tag-latest-news-ticker","13":"tag-personal-finance","14":"tag-personalfinance"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/270417","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/comments?post=270417"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/270417\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media\/270418"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media?parent=270417"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/categories?post=270417"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/tags?post=270417"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}