Dealing with difficulties accessing care

Jeanette:

One GP said if she’s not eating and drinking that’s okay. She will eventually. Just her be. That stuff used to make me so angry.

Dr Kim Hurst:

Consumers and carers are in the dark. A lot of the time around knowing also what options are available to them.

Imogen:

I only really received care in a medical setting. And that was when I’d reached the point of being medically unstable and needing to be hospitalized.

Sam Ikin:

Almost all of the guests that we’ve had on this show have talked about the barriers that they’ve faced when they were looking for effective treatment.

Dr Kim Hurst:

There is an absolute limited understanding around what to do or where to refer these patients.

Sam:

So, we’ve decided to spend this entire episode looking more closely at these roadblocks to care, what caring professionals are doing to address them as well as what we can do ourselves while we’re waiting for things to change.

Dr Gemma Sharp:

There are so many barriers that people may encounter when they’re reaching out for eating disorder support.

Sam:

This is the Butterfly Let’s Talk podcast from your friends at Butterfly, your national voice for body image issues and eating disorders. I’m Sam Ikin. The common barriers or roadblocks to care include things like a lack of specialist clinicians, lack of trained GPs to recognize the signs and offer support themselves, or to refer you on to a specialist. And then we have other things like the stigma or ambivalence that stop people looking for help in the first place. And, of course, then there’s the cost of care, which can sometimes be prohibitive.

Dr Kim Hurst:

The stigma associated with weight and shape bias in relation to an eating disorder is a significant factor. I am Dr. Kim Hurst. Currently I am the president of the Australian and New Zealand Academy for Eating Disorders. I am also the clinical lead at Robina Private Hospital in Queensland. It takes patients a lot of courage to actually go and say, I need help. And then to have a professional say, oh no, you don’t need that, what you need is something else, it’s really actually quite, I guess, distressing. Most of my patients come to me and say, I don’t feel sick enough. I’m unworthy of care. And that’s one thing that I really think needs to change in terms of educating professionals, particularly the front-line workers.

Sam:

Someone who knows all too well what Dr. Hurst is talking about is Imogen, our next guest. And like so many of us she’s been on a very long and windy road to recovery. She can relate to the feeling of being unworthy of care or just not looking for it because you don’t feel sick enough.

Imogen:

Unless you become medically unstable. It’s so, so hard to get external validation. I developed an eating disorder when I was around 16. Throughout my adolescence, I suffered quite severely with obsessive compulsive disorder. And I definitely think that my eating disorder has very obsessive compulsive origins. And when I was about 16, I went on medication and I was just warned by my doctors that this medication, it might affect your weight, just watch what you eat more. And it was just enough ammunition really. I developed a very obsessive relationship with food very quickly. I took the watch what you eat a little bit too far and very quickly, my obsessive tendencies just rooted themselves in food and weight. It lends itself to a lot of shame, I think, and shame is not conducive with healing. You can’t heal from something that you’re ashamed of. And I also think it lends itself to our reluctance to seek help, which is certainly also not conducive with healing. External validation is such a pivotal part of recovery.

Sam:

Stigma and the general lack of understanding were things that caused roadblocks for mother of three, Jeanette, who has two daughters who had very different journeys with eating disorders.

Jeanette:

My family had no idea what an eating disorder was. “Just make her eat. She’ll be fine.” And that was fairly common back then. So, you don’t share it with too many people and people have no understanding of it and make their own assumptions, I suppose. And plus, it’s a mental health issue. It’s an enormous thing that people struggle with anyway, and you beat yourself up as a parent. I remember seeing one doctor who said, “Well, did you have any sort of depression that you could have given in utero to your child”, or all of this stuff. You beat yourself up enough without having crazy comments like that.

Dr Gemma Sharp:

You wouldn’t say to someone, why don’t you just stop having cancer? Would you? It’s exactly the same. And I think we’ve got to that place where we realise that anyone can experience anxiety, anyone can experience depression. There’s no kind of a particular body that we believe that comes in. Hi, I’m Dr. Gemma Sharp. I’m a senior research fellow at Monash University, and I’m also a clinical psychologist.

Sam:

Dr. Sharp says the stigma stems from a lack of understanding.

Dr Gemma Sharp:

I think bodies like the Butterfly Foundation and groups around Australia are doing a wonderful job of providing professional education to people in the health professional field, just to help better recognise eating disorders and help shift some of the stigma around when people present with eating disorders, and helping them get the care they deserve. So, I think it is about really basic education around what an eating disorder looks like.

Sam:

The next roadblock that Dr. Sharp told us about is one that we covered way back in the very first episode of this podcast, right back in episode one of season one, the “Tyranny of distance”.

Dr Gemma Sharp:

Particularly if you live outside of main cities, main capital cities, you may struggle to get a service in your area that really understands eating disorders and your support needs.

Jeanette:

It was quite confronting that we were in a regional area where the GPs had no understanding of our issues and no clear pathway. My middle daughter’s experience was now some 16 years ago, she was seeking treatment for quite severe OCD. So we battled through the public system until we could get to a stage that we had access to treatment in Melbourne, which was primarily based on OCD treatment. And we were made aware that her condition may progress. And if that was the case, she would primarily develop an eating disorder. So, we had that flagged a little bit, unfortunately, because the only treatment available for her was in Melbourne. We were back and forth to Melbourne for a number of years. And unfortunately, it did develop into an eating disorder.

Sam:

The feeling of isolation, of being stuck in a place where you can’t access the right treatment is something that has been described by a lot of people who live in regional and rural areas. But recently it’s something that people who live in cities have been experiencing too.

Alex:

But of course, we’re also in the middle of COVID lockdown in Sydney. So, it’s just added that additional challenge. My name’s Alex, I’m a father of three daughters and I’m currently based out of Sydney. We’ve been going through the process for some time now with my daughter’s eating disorder. When my daughter was nine years old. She became very dogmatic around, I guess, healthy eating, exercise. She was always an exercise nut. She became very focused on sugar-free eating, healthy eating, and over a period of about three years it became I guess, tighter and tighter and more restrictive.

Sam:

As we record this, Alex and his family are stuck together in lockdown in Sydney, but unfortunately this isn’t their first experience with lockdown.

Alex:

We had actually just arrived in Melbourne in March of 2020. And of course, we went into the COVID lockdown. So, for the space of about two months there, my daughter was homeschooling. She was with her two sisters as well. And we were in a small townhouse there in Melbourne and quite a tight space going into winter. So you can imagine it’s not the best environment for a teenage someone who’s going into puberty. And on top of that, she couldn’t exercise outdoors.

Sam:

After their experience in Melbourne. Alex decided to move the family back to Sydney so that they can access the right care and things were starting to move in the right direction.

Alex:

At the moment, we currently have her engaged in an out of hospital program, which is essentially us rocking up to the hospital once a month for a bit of a talk with one of the experts there. And we are also in-between psychological services. So, we’re trying to engage with a new psychologist at the moment, but of course, we’re also in the middle of COVID lockdown. It’s just that additional challenge on top of it as well.

Sam:

The impact of COVID on our country, hasn’t been insignificant. Butterfly reported a surge in calls when lockdowns started last year and over the last 12 months, Australia has experienced a surge of around 40% in eating disorder presentations. And that’s not including the people who aren’t reaching out for help. And our next roadblock, certainly isn’t helping with this increased demand.

Dr Gemma Sharp:

There are also things like a lack of trained clinicians in this space, unfortunately.

Jeanette:

There weren’t any incidents of eating disorders that we were aware of in our area. So therefore, there were no doctors that we saw that had a sound understanding of what we were going through to the point that one GP said, “If she’s not eating and drinking, that’s okay. She will eventually. Just let her be.” That stuff that used to make me so angry now, and I just look back and go, they just didn’t know. They didn’t have access to the information that they needed. And it was a solo path and there was nothing in an area in our regional area that could give us information that could support us. And then navigating the same problem when we finally got some names in Melbourne, there’s not enough resources there. I don’t know how many places we rang. No new patients. Sorry. Next number. It was mind blowing.

Dr Kim Hurst:

Consumers and carers are in the dark a lot of the time around knowing also what options are available to them. But it doesn’t just have to be seeing a dietician or a psychologist. There’s a whole range of other professionals, even in the private sector and the public sector that they can access. So it’s not only the levels of care, but it’s the type of professional, peer mentor workers, those kinds of things, recovery coaches. So, there’s a lot of other avenues for patients. I think Butterfly, NEDC and ANZAED try really hard to reduce the stigma and to help people understand the illness and helping professionals and carers understand that I think is another avenue for us to build capacity within the system.

Sam:

Dr. Hurst just threw out a couple of acronyms, which I’ll unpack for you. The NEDC is the National Eating Disorder Collaboration and ANZAED is the Australian and New Zealand Academy for Eating Disorders, which is the group that Dr. Hurst heads up herself. There’ll be a little bit more information about both of them at the end of the show. And that brings us to our next roadblock. That is sometimes when the right care is there. It’s just too expensive.

Dr Gemma Sharp:

There are other things like cost. It’s certainly not cheap to access services. If you’re experiencing an eating disorder, you’re likely to need a lot of help over a potentially a number of years. And the cost just mounts up.

Imogen:

I was fortunate enough to have private health insurance, so I could access private health care, which not everyone has the financial capacity to do. But it also meant that until I was an adult, I only really received care in a medical setting. And that was when I’d reached the point of being medically unstable and needing to be hospitalized for physical rehabilitation. And the vast majority of eating disorder sufferers, don’t actually get to that point. So, unless you become medically unstable secondary to eating disorder behaviors, it’s so, so hard to get external validation and to feel legitimate in your own suffering.

Sam:

Unfortunately, COVID is one of the roadblocks that we have absolutely no control over, but many of the others are things that we can work on. And Dr. Kim Hurst says there were some very encouraging signs at the moment. Things like the introduction of Medicare item numbers for eating disorders and eating disorder specific mental health care plans.

Dr Kim Hurst:

Probably, at least 10 or 15 years ago, there was such an under resourcing of professionals that actually understood how to assess, diagnose, and treat eating disorders. So, I think the system now is starting to actually progress in terms of us getting more clinicians into this space.

Sam:

So, things are improving and quietly behind the scenes lots of things are being done to improve the situation and to get more trained clinicians on our front lines, the organization that Dr. Hurst heads up –that’s the Australian and New Zealand Academy for Eating Disorders or ANZAED–is in the process of launching a massive credentialing system in a joint operation with the NEDC that’s the National Eating Disorder Collaboration. This project is being supported by the Australian government. How does it work? Let’s let Dr. Hurst explain it.

Dr Kim Hurst:

Basically, what we’re doing is we want to help people that are experiencing eating disorders, access the right care at the right time. We want referrers to actually know who to refer to. And we want a lived experience and consumers and carers know that there is a pathway and a system that’s going to support them and guide them. So, it’s a massive project, the Department of Health, so the government, have funded us out of the budget to actually now implement the credentialling system.

Dr Kim Hurst:

So that for me is super exciting. It includes workforce development, training and supervision incentives, just a complete kind of overhaul, I guess, of the way that access and care is going to be provided. I’m super, super excited by this. We’ve done enormous amounts of consultation within the sector with lived experience who have told us “We want to be able to access a system that we can navigate through and know that we’re going to get care.” Because early intervention is key, right?

Sam:

Yeah. That’s right.

Dr Kim Hurst:

So, we don’t want to be wasting time, trying to find someone, we want to find someone and know, actually, they’ve got the skills.

Sam:

Having a uniform system that can help patients find the right clinicians at the right time will certainly help to remove some of those roadblocks. And that’s just one of the programs that’s underway. Lots of stakeholders are working hard to fix this situation as we speak. But let’s go back to our lived experience guests and see how they coped with the barriers that they faced at the time.

Imogen:

I’ve been in a place where I was approved and my sickness was validated and people were like, okay, so you do have something, but you don’t look like it. I’ve also been in the other place, where you are, ‘healthy,’ apparently; you don’t meet the stereotype. And so, I knew that no matter where I sat, I didn’t feel worthy of recovery. And I felt so ashamed. And so, I think the realization came that I was never, ever going to satisfy anyone’s idea of sick. I have to do this for myself because otherwise, if I’m constantly basing my worth on external factors, I’m going to feel constantly unworthy. So, that was it. I was like, okay, I’ve been literally to hell and back. Because, that’s where an eating disorder sort of takes you. Instead of asking myself, am I sick enough? I started asking myself, goodness, haven’t I been sick and doing this for long enough? Like, do I not just deserve to get that better? Because we do. Oh, my goodness. No one deserves to suffer.

Jeanette:

We had to persevere. I always persevered. Just keep asking questions, keep ringing who you need to ring. We had to, and it panned out in the end. It’s just difficult but it’s worthwhile. You can’t not do it. It’s unfortunate overall. And I could list and you could list. And lots of people could relate to all those comments that a medical person or a GP or anybody has said to you. I was told at one point, “She’ll never get better. Why are you bothering?” You just retain those things. And it either drives you or squashes you, but just persevere and trust your instincts really.

Alex:

We’ve worked very hard to try and be as inclusive as we can and allowing the three of them. I mean, the three of them are very tight knit together, but they just don’t know what’s going on in their sister’s mind. And so we try to explain it to them, we try to sit them down and say, look, this is something that we want to see you guys take on board and that’s always a concern of ours is that our other two daughters will take some of that. We work with them to understand. We talk it through all the time as a family, but they see things. They’ve seen the screaming, the yelling that they’ve seen all this. And so how do you explain to them what it’s all about? I think therapists have tried, they brought my other two daughters in and try to explain that and try to have some conversations, but to be frank, we need more of that. A lot more of that.

Sam:

As it stands, we have an increasing demand for services from a system that was already struggling, but there are a few things you can do. Firstly, we’re advised to find the right doctor. If you don’t have a GP who you feel gets it, look for another one. There are lots of organizations who can link you up with the right doctor and I’ll throw out some details in a few minutes.

Dr Gemma Sharp:

I think even patients themselves like consider upskilling the person they’re talking to. If they visit their GP they could say, “Hey, have you read this about eating disorders?” You might consider doing that. So, I think these learning opportunities can come from anywhere. I think that there are people in the media as well, more mainstream media. There are people on social media channels as well, pushing for greater understanding of these misunderstood conditions. There are a lot of pockets really trying to do this well. And it’s just about people being open to hearing the message.

Sam:

If you know what sort of specialist you need, but you can’t find one that’s available, put yourself on as many wait lists as you can find. Appointments do come up eventually. And if you’re not on the list, then you’re not going to get a call. And while you’re waiting, you can start making baby steps towards recovery yourself. The chances are, there’s a support group near you. And if you can’t get to them in person, for whatever reason, a lot of them are being held online at the moment. There’s also lots of resources online that you can access from almost anywhere. Stay with us for some more details on those in just a moment. I’d also like to point out that Dr. Gemma Sharp has been working to improve the system herself. She’s the brains behind the AI bot called KIT on Butterfly’s website. It’s a 24-hour service that helps connect people with information they need to get support. And I’ll throw out the details for how you can find KIT very shortly. And Dr. Sharp says that on a national level, some really big steps have been made in the last couple of years.

Dr Gemma Sharp:

A wonderful, recent example of that is the introduction of the eating disorder plans. Back in November 2019, there is no way we would have thought in the past that, that would ever happen, that eating disorders would have their own specialised plan under Medicare. And it was people lobbying the government, lobbying Medicare to get this done. And I think that was a huge step. And that has started momentum in the recognition of eating disorders, getting extra treatment, specialised treatment, et cetera. So, I think that was a huge victory for all of us.

Sam:

If you need support for an eating disorder, you can call the Butterfly National Helpline over the phone on 1 800 33 4673. That’s 1 800 33 4673, or 1 800 ED HOPE. Or go to butterfly.org.au. There you’ll find heaps of resources, including Dr. Sharp’s interactive AI bot called KIT. If you prefer email, that’s fine. You can flick a message to support@butterfly.org.au. We also highly recommend you look at the resources offered by other eating disorder organizations. Groups like, Eating Disorders Victoria, Eating Disorders Queensland, Eating Disorders Families Australia for support networks, or check out the national bodies like the National Eating Disorder Collaboration or Dr. Kim Hurst’s, Australia and New Zealand Academy For Eating Disorders. I’ll put all the websites and contact details for them in the show notes. The Butterfly podcast is an Ikin media production for Butterfly Foundation. With special thanks in this episode to doctors, Gemma Sharp and Kim Hurst, as well as Imogen, Alex and Jeanette for bravely sharing their stories. You guys are amazing. Thank you so much.