Evidence of meeting #16 for Status of Women in the 41st Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was parents.
A recording is available from Parliament.
3:50 p.m.
Conservative
Susan Truppe Conservative London North Centre, ON
Thank you.
Ms. LaBorde, thank you for sharing your story about your daughter. I think you said she was 10 when you noticed a change in her temperament. How old is she now?
3:50 p.m.
Conservative
3:50 p.m.
As an Individual
She was diagnosed. She's in recovery now. She's not ill at the moment.
3:50 p.m.
Conservative
Susan Truppe Conservative London North Centre, ON
What was the best thing that came out of the Maudsley family-based treatment? What was the thing that helped you most? You seem to have had to do a lot of it on your own.
3:50 p.m.
As an Individual
Focusing on getting her weight restored, and having that be the first and most important focus was very helpful to us.
3:55 p.m.
Conservative
Susan Truppe Conservative London North Centre, ON
After everything that you experienced with your daughter, probably first not getting help and then having to look on the Internet to see what else you could do, is there anything you would recommend that might help as public awareness for kids at school who have eating disorders or for families?
3:55 p.m.
As an Individual
I think what would be very helpful is to have first-line physicians—primary care physicians, doctors, psychiatrists, psychologists in the community—be aware of eating disorders, the current evidence around eating disorders, and the evidence-based treatments, so that when parents notice something's wrong with their children, they actually get up-to-date information early. That would be helpful. In terms of public awareness, the focus seems to be on the environmental aspects, media and things like that. What would be more helpful is to have more of a public awareness around the biological and genetic factors that contribute, because those are, I think, what parents can see first.
Had I known that hereditary factors are so important and that a history of eating disorders in your family raises a child's possibility of being diagnosed with an eating disorder, it would have been helpful information for me to know. As I said, she wasn't really influenced by the media. She was 10. There wasn't a lot of thin-ideal internalization on her part, but we did have a history of eating disorders in our family. I'm adopted and I found that out later.
3:55 p.m.
NDP
The Chair NDP Hélène LeBlanc
Thank you very much.
Thank you very much, Ms. Truppe.
Ms. Ashton, you have the floor for seven minutes.
March 5th, 2014 / 3:55 p.m.
NDP
Niki Ashton NDP Churchill, MB
Thank you very much, Ms. Lambert-Crawford and Ms. LaBorde, for joining us today for such an important study and for sharing your personal experiences as a survivor and as a mother.
Ms. Lambert-Crawford, you spoke of your experience. In your experience as a counsellor, when someone is living with anorexia nervosa, depression and anxiety, when that person has the multiple illnesses at once, could you speak to the challenges that person faces in dealing with the system the way it's set up?
3:55 p.m.
As an Individual
First and foremost, eating disorders don't exist in a vacuum, so generally speaking there's always going to be.... It's an anxiety-based illness, so there's anxiety, depression. There's a very high level of comorbidity that is happening.
To answer your question in terms of challenges, it is very challenging because you have to meet the specific criteria of whatever the program is. I was told that I was too sick for certain programs. Some of my clients who maybe are struggling with any sort of substance abuse or alcoholism, they are no longer eligible for these programs. A lot of programs don't treat binge eating disorder. There is a lot of criteria that you have to meet to be able to access the treatment that we have right now. That is really challenging.
From FBT, family-based treatments, the Maudsley approach, if the family doesn't have the resources to take time off work to do the work that you need to do with your child.... I have worked with many families for whom that's very challenging. A particular family that I worked with had five kids in the house, so it was very hard for them to not have the eating disorder affect the rest of the children. They were scrutinized and really made to feel that they were bad parents through their program because they couldn't take that time to help their daughter through the way that FBT or the Maudsley approach needs to happen.
It's a very big problem in terms of lots of doctors finding that eating disorders are too complex to treat because they are so multi-faceted.
3:55 p.m.
NDP
Niki Ashton NDP Churchill, MB
Thank you.
I'm wondering if you could share with us, perhaps briefly, so I can make sure I get to Ms. LaBorde as well, in your experience, why do you feel that many people end up leaving treatment before it's over or maybe don't even stick around to start treatment?
4 p.m.
As an Individual
I think our treatment here is very black and white. The treatment here for eating disorders hasn't changed in the last 20 years. If you're not able to comply completely, you're not given any chances. There are very strict criteria in terms of how much weight you have to gain. I'm talking about the adult system; I should clarify. There are very specific criteria. The short answer is that the biggest barrier is there's no flexibility. For someone with very high anxiety, that's very challenging.
4 p.m.
NDP
Niki Ashton NDP Churchill, MB
Thank you very much.
Ms. LaBorde, in this committee we've heard from others that families really struggle in terms of resources and information. Given your involvement with F.E.A.S.T., do you feel that federal funding would be important to an organization like F.E.A.S.T., and if so, what would F.E.A.S.T. be able to do with federal funding: awareness, support, counselling for families?
4 p.m.
As an Individual
All of those, in short. F.E.A.S.T. provides advocacy and education to parents or any caregiver of an individual with an eating disorder. What provided me with the most assistance through the entire process of caring for my child was on-the-ground support, but it was virtual on-the-ground support. F.E.A.S.T. has a forum and it's international so there's always somebody online. Because it's a 24/7 day in, day out type of care that's needed through the acute phases, that was vital.
I think because the community is lacking in resources, parents are left adrift. F.E.A.S.T. provides that; it fills some of those gaps in terms of providing parents with a road map for how to do FBT. It complements the family-based treatment that they're getting in their communities. With federal funding for something like that.... They exist as a touchstone for parents. They operate to fill some of the gaps. I think with awareness and with peer support, a lot of parents would have the additional resources.
4 p.m.
NDP
Niki Ashton NDP Churchill, MB
Thank you very much.
Just quickly, Ms. LaBorde, we've heard from others that treatment often is blind to issues of diversity, or perhaps people in the field are, whether the diversity is in girls of colour, LGBT girls or boys, or disabled girls. I'm wondering if you could speak a bit to the importance of recognizing these factors.
4 p.m.
As an Individual
The narrow view of who is affected by this illness affects families deeply because the illness is very isolating. Caring for your child and the level of focus that takes means that families are often quite practically isolated during the care period. Also, it's isolating in that if you fall into one of the groups that you've mentioned, the understanding isn't there. The awareness isn't there. So you are educating as you are caring for your child. The burden of that is quite onerous. I think that public awareness that shifts how the public understands eating disorders is helpful.
4 p.m.
NDP
The Chair NDP Hélène LeBlanc
Thank you very much.
Ms. O'Neill Gordon, you have the floor for seven minutes.
4 p.m.
Conservative
Tilly O'Neill-Gordon Conservative Miramichi, NB
I want to thank both of you for being with us today. Congratulations and thank you for all the work you do. We realize it is a disorder that requires a lot of work and understanding. We also want to thank you for sharing your personal stories. That is not easy for anyone to do. We certainly appreciate it because our focus and our study on this disorder have certainly given us a lot of information.
My first question is for Ms. Crawford. We have been told many times about the lack of community help. How large is your community of fellow professionals who specialize in this disorder? Are there enough? Should more be available? Or is it something that we find very common when we go to our regular doctor, a lack of that, I mean?
4 p.m.
As an Individual
That's a really good question. I know that for myself in particular, I practise out of Burlington and people travel hours and hours to get to me. I don't know how many exactly specialize in this field, to be honest, but I think that in my small city of Burlington, there are only two of us who will even take anybody with an eating disorder.
In larger cities like Toronto, there are more therapists out there, but the challenge with private therapy is that it's very expensive. Individuals, if they want to have a therapist in Toronto, are paying upwards of $200 an hour. It's not very feasible for most families.
4:05 p.m.
Conservative
Tilly O'Neill-Gordon Conservative Miramichi, NB
We have heard about the financial struggle parents have had in order to obtain information and get help for their children.
Although we've known this has been existing now for some time, do you see many positive or negative changes? Do you see changes being implemented in today's system that are bringing parents more awareness that this disorder really is a sickness, that it's something out there and something we need to be aware of and be ready to face?
Ms. Crawford.
4:05 p.m.
As an Individual
I wish I could say yes. I think the work that we've done through NIED in the last two years has been pretty incredible. One of the biggest doctors in the field, Dr. Woodside, said that he'd seen more change in the last year than in the last 30. That's positive in terms of bringing awareness. But the awareness isn't necessarily making the changes that need to happen. I think that one of our goals is to get the awareness out so that parents and supporters can be the advocates for the sufferer, to make up for the lack of understanding, unfortunately.
4:05 p.m.
Conservative
Tilly O'Neill-Gordon Conservative Miramichi, NB
Yes, and we did hear that too, that many times we think it's not really a disorder, that it's something they have to get over. This issue has to be brought forward to parents who are hit with that all of a sudden.
My next question is for Ms. LaBorde. Thank you for sharing your personal story.
We can be safe in saying we need changes out there to make people more aware of the disorder. What would you like to see change for others who are seeking help in our current system?
4:05 p.m.
As an Individual
I think a focus on early intervention is very important for families. Often there's a gap between diagnosis and getting treatment. There's a wait-list time. There's much that can be done during that time in terms of education, in terms of support. Even linking parents to peer support during that time would be helpful so they could start with the process of treatment. Really to demystify treatment, much of it is around feeding your child, but how to do that is what parents need education on. I think if we focused on early intervention and got to families at the very beginning of the diagnosis, a lot of change could happen.
4:05 p.m.
Conservative
Tilly O'Neill-Gordon Conservative Miramichi, NB
What specific barriers did you face when you attempted to get treatment?