Meeting The Parents Of Children With Eating DisordersHighlights from The Pat Kenny Show
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- 3 Mar 2021
Parents and carers of those with eating disorders tell us about the emotional and financial burden these illnesses can cause with our reporter Paul O'Donoghue.
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The part Kenny show on news talk with Marter private network during current restrictions. Don't ignore your health concerns. Our expert team is ready to help. It's Eating Disorder Awareness Week this week and yesterday, you might remember, Emma McGovern talked to us very eloquently about her struggle with the illness.
Well, today, we're going in a slightly different direction. We're focussing on the parents and carers of those with eating disorders. A new study from a parents group has given some insight into the financial burden that these illnesses can cause while there's meant to be public treatment available. Many parents reported spending thousands on their child's care out of their own pockets. Our reporter Paul O'Donoghue spoke to the parents of some people with eating disorders who revealed the financial and mental toll that this can take on a family.
Paul, good morning. Good morning. What did you find? Yeah, so treatment for eating disorders like anorexia and binge eating disorder, like you're saying, is meant to be largely free through the public system. But services, especially for adults, they just don't exist in many parts of the country. A new study from a parents group called Caring about Recovery from Eating Disorders gives a better insight into this. The group polled 100 of its members and found 42 percent had spent money out of their own pocket on treatment of that amount.
That forty two percent half had spent over 5000 euro with a couple of spending, 20000 or more. The most common costs were individual sessions with counsellors and dietitians. It should be kept in mind. Sample size is quite small here, but it does give a pretty good indication of the potential costs for families. When the parents I spoke to Paula. She estimates she spent as much as 20000 Jarro over the years on treatment for her 27 year old daughter, Laura, who was anorexia.
So I suppose for now, she has a therapist who has been incredibly supportive. She's a psychiatrist who is area of expertise, isn't eating disorders, but he's been very supportive and very good to her and to us. But from a public health standpoint, there's just no place, really. And then, of course, there's the ongoing therapy is what the ongoing charges are for for for us and say we are close on 15, 20000. You know, we realise that we're you know, we're unfortunate situation, you know, where we've come to, where we've been able to manage to be able to do that impact.
And family for the whole thing has been massive. We've done everything that we can do. We've always been at her side. It's not always easy, but it's not easy for her either. Just as hard as it is for us, it must be so much worse for her. And I and I know she doesn't choose this. And I know this isn't your fault. I think she feels guilty about all of this. At the same time as a family, we can't ignore what's going on or what has been going on.
And I think sometimes she finds it hard that, you know, the other kids are getting on with their lives and they're doing what it is they need to do to get on with their lives. And she's and she's very stuck. I think if we didn't have the health care system to look after diabetes, heart attacks and all those other general medical services that are that are out there, there'd be more eating disorders are had the highest mortality rate of all psychiatric illnesses.
If you're if you're underage, if you're if you're a child, there's CAMHS and there's lots of services out there. But once you become 18, once you turn 18, your family are out the door and there's nothing else out there. Now, just to pick up on what Paula was mentioning there, as well as the financial cost, it's quite clear there's a huge emotional toll for the parents.
Yeah, that that is really part the money is kind of more obvious when I suppose. But the long term mental impact from the parents we spoke to can easily be just as draining. The parents and carers surveyed that we mentioned earlier found 69 percent of respondents weren't happy with the treatment their child got through the public system. And the problem is particularly bad for those like Paula who have adult children, because specialist services for eating disorders simply don't exist in most parts of Arden's for adults who have these conditions.
One quick thing to note, by the way, all the parents we spoke to got permission from their children to talk about their cases, although, alas, that we either just use their first names or pseudonyms. One man, Adrian, his 18 year old daughter, Effa, have been suffering from anorexia for just over three years, and he told me how powerless it can make parents feel.
It's just being hospitals constantly back in Kuharich here a few times in the last 12 months. That's that's that's where we're at. It has a huge impact. There's no getting away from our own point of view. And on my wife shortly after it was diagnosed at work, I just couldn't cope with us and myself there 12 or 15 months ago. I just had to give up working. I just couldn't I just couldn't do it anymore. As far as we've a benefit coming in, thanks for the guidance and whatever savings we have, we use.
And that's reasonable. We just we have to get by. And, you know, these guys, we get to normality soon again, which we're very hopeful for. I suppose seeing your daughter on the abilities and not easing is very hard to understand, because I suppose the most basic thing that we all do and I think is just takes a long time for parents and siblings to understand that it's not the child's not wanting to ease, it's that the person suffering can't he's not qualified for the quarter.
They're mean when they're two or three years of age. You go over, you make it better, you put a Band-Aid on and it makes it all better. This is so hard because you can't say something that'll make it better. You can't give something that make better. The person themselves need to make it better. And the only way they can do that is by you being there to support them and to help them. But there's no magic fix and it's a long, hard road for anyone going through puts.
So many have come out on the right side, you know, that will eventually get there. But it's it's difficult when you're going through. So for parents whose children have eating disorders or who suspect that they could perhaps be developing one, what should they do? Yeah, I spoke about this with Dr. Maev Doyle. She's a consultant to child and adolescent psychiatrist. She was saying that parents should first be aware of a regular eating habits or the children losing weight.
One thing in particular. She emphasised the importance of carers and guardians making sure that they're properly educated.
Their first port of call, I think, might be to educate themselves about an eating problem, whether this person might have a disorder or not. Getting on to that set of care and information mobile app that you can download. Then if they say, yes, I really do have a daughter here with an eating problem and she has never been seen by either her general practitioner or referred to the local child and adolescent psychiatry service. And that's the next line.
And they need to bring their as a matter of urgency, I would say that a face to face decisions necessary for a young person that you're suspecting an eating problem because children and adolescents particularly can lose weight very fast. They can be overexercising, they can be overloading on fluid to try and give the appearance that they're they're putting on weight and they can run into problems where they're dropping their blood pressure if they get up quickly or they can have low blood sugar and they can faint.
So in my view, really a face to face consultation is essential to diagnose this eating disorder.
That's the advice for parents. But many of them clearly feel when they do come forward, the services that their children need simply are not there. So what changes do the parents want?
Yeah, the main thing is bring in what's called model of care. This is a plan to improve national eating disorder. Care that was launched by the hay to see at the start of 2018 involves setting up six specialist halls across Ireland for treatment. But over three years later, just three have actually been set up and are up and running. And even those that fully staffed and the plan has been consistently underfunded. Year on year Connies 25 year old daughter Louise suffers from anorexia, is another parent, and she told me how what she wants is for this plan to be properly funded and fully rolled out.
So Louise would probably have presented with using issues from the age of 12, but it was really at the age of 16, 17 that things got out of control. And we're now nine years down the road and Louise has had severe and enduring eating disorder due to anorexia. And we've had a long journey in terms of our contact with the mental health services, the regional hospital, the private hospitals, St John of God and St. Pat's Dublin, and then having to go to the UK.
So we've had a long journey and cycle of failure in terms of treatment coming out of hospital and not being supported and having to go back into a unit or care again between the dietician as the therapist. It's went over 5000 a year. That's that's ongoing costs at the moment, in addition to all the other expenses that we've had to pay throughout the years. You know, I am very feeling, very let down and abandoned by the services. We have seen that there is a model for care for eating disorders in Ireland and there has been very little investment of three percent of the funding allocated to that programme has been spent since 2000 and 80.
I think the public services know exactly what they need to do. They need to implement the model for care and they need to set up the specialist hubs which are equipped and skilled staff that are properly trained that can provide both the medical and the psychological support in one place for our children and adults with eating disorders.
Well, that was Connie, whose daughter suffers from anorexia as some of the comments, the cost of access to services for mental health in Ireland is a disgrace. It's so hard to get proper help unless you've big money. That's from Shonna. My daughter has recovered from anorexia. She got to the stage. She was dying. We had years of heartbreak. The key for recovery was to leave the public treatment, which made her worse. And we found a counsellor who was a recovered anorexic.
They immediately bonded because she understood my daughter came out of the treatment, a new person, and is living a happy life now. I never thought I would see the day. Well, thanks to Paul O'Donoghue for. That report's Nick.