Families Speak Out...

Here in Mississauga we run our monthly support group meeting on the third Monday of the month; last night four ladies joined me for our July meeting. A common topic that seems to come up during discussions month to month is the system or lack thereof. Families have first hand experience in dealing with the shortfalls of our Mental Health System and are often left picking up the slack. They really do provide all of the same community based services with little to no training, financial support, or respite care.

We try to stay away from "system venting" as much as possible in our support groups as it often is not constructive, but last night I offered the group 6 minutes of 'system venting' which was enthusiastically received. The catch to our system venting period was that the families had to end their venting with constructive suggestions to improve our Mental Health system here in Ontario. Leave it up to the experts to identify what is missing; here were some of the suggestions...

· Community-based Mental Health Emergency rooms-people can receive the respect and dignity they deserve while they are unwell without having to be escorted in front of others by police, or having to sit in an emergency room with other people presenting physical injuries, etc; a place where individuals do not have to be locked into rooms with little to no support. A place where consumers and families can come in and talk to crisis workers; a place where people can talk face to face and others can listen.

· Follow up, follow up, follow up. Families want to see a system that has a follow up process. When you need to see a specialist someone makes that appointment for you as soon as possible and then they call to remind you of your appointment. Families do not go out and try to find their own Cardiologist, Urologists, Oncologists, etc. the system finds it for them. Let's have an effective system that supports families in finding mental health support.

· Family-centered care-this means including the family in the process, listening to what the family has to say, taking their observations into account. "Families don't just go out and Form their loved one for fun" Family centered care within ER settings as well.

· Family education-many families figured this system out on their own; "help us help our loved ones" Not much to ask for.

So the 6 minutes of 'system venting' turned into 15 but what a great way to spend 15 minutes. Families really do know what is needed, they know because they are the ones that are actually working within the system.

Families are looking for and needing changes. They will continue to wait.

A Life Altering Event

I ran into Tom Regehr of Cast Canada at the grocery store the other day. At first I didn't recognise him as he had lost so much weight. It turns out that Tom had been diagnosed with throat cancer, had gone through chemo and radiation and had been fed a liquid diet through a tube for several weeks. What a thing to go through! As usual Tom had an acute observation and taken something positive from his life altering event. Tom pointed out that while the medical procedure treatments that he had received were top notch there was a glaring lack of emotional support or recognition of how this affected him as a person. The only slight recognition was a half-hearted offer for him to speak to a Hospital Social Worker. Tom explained that there was the emotion impact of receiving the initial diagnosis and contemplating that he may die, the incredible and unrelenting pain involved with the treatments and finally the message that he was now cancer free. One might think that this announcement of being cancer free would be a cause for celebration and allow the forgetting of the previous emotional turmoil but no - Tom says he was in the "fighting" mode to deal with the cancer and it's emotional impact and not yet ready for this news, welcome as it may be.

Tom feels very strongly that our health care system and society in general are not recognising the whole person and the emotional impact of such events. I think Tom has a very good point.

On behalf of Frank...

There is no denying that Frank is a busy bee out in Brampton working 3 days a week, so I thought I would take it upon myself to write a bit about the wonderful Brampton summer social that took place on June 30. It was again a pleasure to be out in Brampton working with colleagues and seeing the wonderful Brampton/Bolton families that I have gotten to know over the last year. A great turn out of 15 plus joined us that evening for delicious sandwiches, salads and desserts. Again a special thanks to Christine who drove down some homemade salads to munch on for dinner. Even when you are not there the families know your many contributions!!!

We spent a good chunk of the night playing a Guess Who game where each person had to answer 6 questions about themselves and the rest of the group had to guess who the person was. Even though many of us did not know each other very well this activity was a hit and resulted in a coin toss for first place winner. Some of the best responses came from the questions asking about what the worst thing people did as a kid was and what made them different from the rest of the group.

Many thanks again to the families that make events like this so much fun and worth while. Special thanks to Nicole who organized the food and Frank for his amazing talent at getting families out to enjoy an evening with us.

Enjoy your summer Brampton/Bolton families.

Lyndsay