a letteR sent

 Hi Sylvia and Todd,

My husband and I are constituents of Todd's and have spoken to him about our experiences with home care.  We are very frustrated with the lack of accountability for organizations that work with government money and real human beings in Ontario.   We are hoping you can help.

My husband receives home care through home and community care - and via SE Health.  He has advanced MS and requires help getting up, showering, and dressing.  I do all his other care.  We are turning 53 this year, and he's had MS since he was 21.  We both work, and we've contributed to our communities with taxes, volunteering, and raising children.

Last year, we had our primary PSW ask to not work with us - SE Health indicated to the HCCSS that he felt our home was "unsafe" with my husband for lifts, etc..  although we have "all the toys" to make a PSW's life easier.  This PSW was regularly in our home, rushing through my husband's care, and bragging about having 12-15 patients (each receiving an hour of care funded by the government) and being "home by 1 at the latest".  When I raised this to his supervisor, I was told that they made "allowances" for him.  We left it, until other PSWs raised a similar "safety" issue - which we suspected was more about the amount of work my husband was, and the inability to be in and out in 20 minutes.  We would regularly go without care.

We argued, but eventually had a case conference in December with the OT, HCCSS, and SE Health (who, by the way, didn't show).  The OT agreed we had all the appropriate equipment and there was no risk of safety issues for PSWs.  She wrote a letter to HCCSS and SE Health to that effect - it is now February and things are not improved.  If our regular PSW is off or sick, they use only two other PSWs to come see us.  One doesn't start until 1 p.m. - leaving my husband in bed until that time, and the other is from a region west of us, and he usually cannot get here until 12:30 p.m. - same thing.  This means my husband misses volunteer opportunities in our community, or valuable meetings that contribute to his mental health.

I have complained through my case manager (who is great) about SE Health and we are escalating it this week.  This means only two more steps before we can complain to the patient ombudsman.  Meanwhile, everyone is collecting government funds and lots of folks are getting paid while my husband lays in bed until after lunch.  

This needs to change.  If my husband was in a nursing home and he was in bed until 1 in the afternoon, we'd all be screaming abuse, but SE Health just keeps getting a cheque from your government.  What's terrifying is that MS is degenerative, meaning he'll get worse, and if the quality of care we receive doesn't improve, I won't be able to care for him at home.  This is more expensive for you - but needless from our perspective.  

Is there anything you can do?  My husband volunteers at three different organizations (he's off on LTD after a career with OPG due to his MS) and attends other meetings and church to ensure he protects his physical and mental health.  Tonight, I called in to SE Health to complain that they gave us a 1 p.m. time slot meaning he has to miss a medical appointment and lay in bed all morning - and the answer was "we offer what we offer - it's up to the client and the family if they accept".

That's your money.  That's MY money.   I do not accept this absolute gong show of prioritizing profits over patients.

I hope you can help.