Faith and Charlie on advocating for holistic care
Faith and Charlie were both experts by experience on the Integrating Mental and Physical Healthcare Systems project (IMPHS)
One of my sons had an episode of psychosis and was in the hospital some years ago, and one of the medications was causing high blood sugars. He said ‘I’m not taking that anymore’, but there wasn’t that conversation to say, well, we are looking at your physical as well as your mental health.
So to be given that chance to be a part of IMPHS and to be a part of the steering group has been really helpful. It has been a place where I have felt supported and confident to put my hand up and say ‘Can we please think about the carer?’ or ‘Can you not use jargon and acronyms?’
If you’ve got an appointment and they start talking to you about metrics and whatever else, it’s not going to help you. This is not just numbers; these are people behind the numbers.
And it’s all very well to say, oh, if you’ve got mental health problems you live so many years less. I mean, when I first heard that when my son was unwell, I was in tears. I was like, ‘What can we do? How do we address that?’
It’s actually the impact on somebody’s life, on each individual life. It’s not just that person, but it could be their husband, their wife, their children, relatives, friends. It impacts on everything.”
I was diagnosed with schizoaffective disorder, and I have traits of epilepsy as well, which can be very bad. My care coordinator helped me get involved in the Health Champions network. Doing all this research, I’ve really enjoyed it. It’s like a new calling. This is where I get passionate and where I know that I could make such a difference.
I want to give back because I know what it was like for me as a youngster. I was so confused. I had a great mother but she didn’t even know what was going on. Nobody knew. I’m a qualified electrical engineer and because of my illness, at my peak, I lost it all. And it was quite hard to accept at first, very hard. You know, everything’s taken away from you like that.
I’ve been able to have my life back again over the years. I’ve been humbled by seeing all the good work that so many people are doing – it’s restored my faith in humanity a little bit as well, it’s fantastic. I found myself really enjoying being able to help.”