About Myalgic Encephalomyelitis (ME)

Saturday, 5 January 2019

Nobody Should Have to Live like This - I Need Care to Live Independently

ME patient Corina Duyn reflects on the challenges of having Disability Services in Waterford accept her as having a disability.




One of ME Advocates Ireland (MEAI) co-founding members, Corina Duyn, a ME patient/advocate, is currently trapped in a care home because she cannot live in her own home without the necessary homecare she requires, and her disabilities are not recognised by the HSE as disabilities in the area where she lives. Her illness Myalgic Encephalomyelitis (ME) is however recognised as a disability elsewhere in Ireland where other patients have been provided with home care packages to suit their needs.



Post code lotteries have become a real issue when it comes to seeking help from the HSE in Ireland. Corina, who needs daily care, is currently looking for homecare that will enable her to live in her own home. She has written to HSE's 'Have Your Say', HSE Community Care, Head of Primary Care, Disability Services, the Public Health Nurse and a Senior Complaint Officer. All are aware of her ongoing situation but so far Corina has not received concrete answers or a solution. Her pleas for help via regular emails and phone calls have fallen on deafened ears and she is now ten days in a care home for the elderly.

Corina who is 56 years of age was forced to go into the home for the elderly over the Christmas period because of a worsening of her health and an inability to care for herself. Corina's greatest fear is that she would have to remain in the care home and won't be able to return to her home. 






Tweet from Chronic Illness Inclusion Project




An article published by TheJournal.ie on January 2nd, and written shortly before Corina deteriorated in her own home during Christmas, highlights the importance of recognising all forms of disability and judging them on their own merit. Sometimes categories of disability do not work and as a result people fall through the cracks in the system. Link to article 
Compiled by MD


3 comments:

  1. I was bedbound with a bucket nhs fibromyalgia diagnosis. Feeling much better since i researched myself and found out it was Lyme Diasease & coinfections like hundreds of others misdiagnosed with ME MS MUS etc Get tested privately. Good luck

    ReplyDelete
  2. Thank you Annette, I hope you are doing much better now you know your correct diagnosis. Best wishes

    ReplyDelete