Thursday 6 December 2018

'Nobody is coordinating the care, there is no single consultant taking responsibility for the ME patients so they are left to sink or swim but mostly they fall between the cracks'.

‘Not only do you wait years to see a consultant, you wait more years for tests. People with chronic illness are pushed further & further away. Why are the vulnerable left to be so goddam vulnerable.' - Joan Byrne

ME Advocates Ireland (MEAI) represented people with Myalgic Encephalomyelitis (ME) and joined the Still Waiting Ireland Health Campaign to show solidarity at their Still Waiting Ireland National Health Demo which took place on October 6th, 2018. 

At the Custom House speakers from INMO, patient orgs, NGOs, Trade Unions, etc, talked about health inequalities in Ireland and numerous advocacy groups came together to protest Ireland's two-tier health service in Dublin.

ME Advocates Ireland (MEAI) have had a supportive relationship with the Still Waiting Ireland Campaign for the last two years. Some of us have attended their meetings over the months and watched them grow in numbers as many other patient groups, trade unions and TDs, etc, joined forces to demand better healthcare.

Still Waiting Ireland supported MEAI’s Dáil event in January 2018 when we had the presentation on ME in the AV Room there. Some members attended inside the AV Room, and again outside after the event where we were given a photo opportunity during their first Press photo shoot. They also supported us with our Visibility Event in May 2018, by attending the event, and offering help with our Press Release beforehand. It makes perfect sense that we would keep up the good rapport in our fight for the same thing, i.e. better healthcare in Ireland for all.

Joan Byrne of ME Advocates Ireland (MEAI) spoke of the need for health equality for all and the estimated 9-18K* people in Ireland who have ME. She spoke passionately about the need for the HSE to recognise ME and asked why this group of patients are so neglected.
Joan's full speech here

ME Advocates Ireland (MEAI) members feature in a short compilation with other health campaigners in an interview on O'Connell Street with the Irish Times at the demonstration. Joan Byrne's soundbites hit home why ME Advocates Ireland advocate on behalf of people with ME in Ireland. Link to Joan's brief interview here

* The prevalence estimate 9-18K people with ME in Ireland is based on International prevalence rates of 0.2-0.4%. Neither the Dept of Health nor the HSE do formal collation of numbers diagnosed with ME.

Top two images by Alex Art. Post and other images by MD

No comments:

Post a Comment