Dear Minister of Health Hon. Sylvia Jones, and LHSC Patient Relations,
Roger Foley has not eaten anything since May 6, 2025. Roger Foley needs to be fed.
Roger has been living at the London Health Sciences Centre (LHSC) for more than nine years. He lives with spinocerebellar ataxia type 14, a degenerative neurological condition. This condition causes Roger to have severe photosensitivity to regular lighting, forcing him to keep his hospital room light off. Several years ago, the hospital provided him with special lighting but in early May (2025) this lighting was removed. Since Roger requires his room to have limited lighting the hospital staff decided that they could not safely feed him. In response, Roger agreed to have intravenous (IV) feeding while continuing to request installation of suitable lighting. IV feeding is not a long-term solution since it does not provide adequate nutrition and may eventually lead to his veins collapsing. He has already had problems with the IV line.
Roger purchased a pair of goggles to protect his eyes from the light and enable suitable lighting for him to be fed. After getting accustomed to the goggles, the hospital decided more light would be needed for him to be fed.
On June 8, 2025, Barbara Kay reported in the National Post that Roger, “…filed a complaint against the LHSC with Ontario’s human rights tribunal because his hospital replaced the special lighting in his room, which he needs because his disease causes extreme photosensitivity, with ordinary lighting.” (1)
On August 11, 2022, Maria Cheng reported the following for The Associated Press: “In one recording obtained by the AP, the hospital’s director of ethics told Foley that for him to remain in the hospital, it would cost ‘north of $1,500 a day.’ Foley replied that mentioning fees felt like coercion and asked what plan there was for his long-term care. ‘Roger, this is not my show,’ the ethicist responded. ‘My piece of this was to talk to you, (to see) if you had an interest in assisted dying.’” (2)
Roger wants to leave the hospital but the Ministry of Health has not approved him for self-directed funding for home care. Self-directed funding for home care is a program that exists in Ontario whereby a person hires their own caregivers rather than a business providing them. Self-directed care is the least expensive and most effective way to provide care.
Roger has not been fed since May 6.
We, the undersigned, request that Roger receive the necessary accommodation for room lighting to enable him to be fed while protecting him from his severe photosensitivity.
Contact person: Alex Schadenberg, Executive Director of the Euthanasia Prevention Coalition (info@epcc.ca)
(1) https://nationalpost.com/opinion/barbara-kay-a-disabled-mans-fight-for-life-in-an-age-of-maid
(2) https://apnews.com/article/covid-science-health-toronto-7c631558a457188d2bd2b5cfd360a867
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