ECPO Patient Lounge – 19 January 21

Well, good morning, good afternoon, and good evening, depending on where you are joining us from. You’re very welcome along to the ECPO Patient Lounge. My name is Vicky Mooney.

I’m the Executive Director, and I will be your host for the next hour and 15 minutes. Now, what do we have in store for you this evening? Let me tell you that we have an agenda full of mental health concerns, discussion, and chats. As we’ve seen, the winter blues have kind of merged with this COVID-19 fatigue, with an obesity epidemic, and rising mental health concerns across the world.

There we will delve into this conversation with, I suppose, one of our most promising advocates, Paul Stevenson. Now, Paul Stevenson will discuss the patient journey with you. And after that, we will delve into a conversation with Nigel, Alyssa, and Tanika Malema from GAMI in Europe.

Now, there, we’re going to talk about mental health across Europe, and in particular here, Tanika’s experience. Of course, we do have our guest panel. Now, this is patient-led.

I’m quite excited about this. They will be there after both interviews to answer your questions, your comments, and your concerns. Now, if you want to get in touch with us, of course, you can.

You can pop onto social media. There, you can go to Twitter or Instagram. You can enter in hashtag ECPOPatientLounge.

And of course, add anything you want to add, whether it is your own thoughts, whether it is your own mental health concerns, whether it is an experience you’ve had, or perhaps some tips or advice. And we’re there to listen to you. Our communications team will pick it up and throw it off to our producer, who will make sure it pops up on screen for you.

Now, if you want to watch us back, you can. You can get us on the ECPO website later on, where this, I suppose, review will be ready for you. As always, a huge thank you to our sponsors, Nova Nordisk and ECPO, who are our supporters and make sure this happens.

So let’s jump to it. Kicking us off is Paul Stevenson. Now, Paul Stevenson is not only the ECPO, or one of the ECPO UK representatives, he is an obesity advocate.

He’s a fiancé, a dad, and a football fanatic, I can attest to that. And let’s hear what Paul had to say when he joined me earlier. Good evening, Paul.

You are so very welcome to our patient lounge. Thank you so much for being here. Tell us a little bit about yourself and your journey with your own obesity.

So I lost my mum when I was 19 to multiple sclerosis. And I really didn’t deal with losing my mum for a very long time. And my weight ballooned up.

At one point, I was estimated to be around 325 kilos. So obviously, there was a point in my life where I decided that I needed to take control back and not rely on foods and admit that I was actually very depressed. I had no willing life at all.

And it was time to take control back of everything I was doing. So I had a gastric sleeve done in 2016. And yeah, it’s been a game changer in this part of my life.

It really has, because I actually remember one of the first times that I met you and you had gone through this phenomenal amount of weight loss quite quickly, like myself. And you were radiant. And it really helps you spread your wings.

And actually, I remember sitting there at the table with you and you were advocating for young people like yourself because you’re a young man, you know, and you had a skin removal surgery afterwards. And how did that go? Yeah, I had a process with that. I was actually offered help by UK.

They offered so much and delivered absolutely nothing. So it was a rough year. I had the operation cancelled five times, which very nearly cost me my relationship, did untold damage on my mental health.

And then I was very fortunate to attend a different event in a foreign country in Switzerland. And I met somebody there that offered to help and they delivered. And I had my operation in April 2019 in Holt.

And yeah, again, it’s given me a whole new outlook on life. I can wear normal fitting clothes. I’ve managed to get a job, work full time.

So yeah, everything’s just gone full circle and it’s good to be back. Yeah, I know myself from going from the girl who, you know, didn’t fit into the airplane seat and that to suddenly have a spring in my step that I can run up the stairs and I just go in and buy a t-shirt off the rack. It gives you this an enormous amount of hope and new lease of life and everything else.

And I’d actually known you in between going from having that weight loss to going into losing the, you know, the appointments for your skin surgery and the next one cancelled, the next one cancelled. As you said, your mental health took a real knock then. And even though you’ve had the surgery and, you know, I see you on Facebook, you’re a gym buddy.

You were out there all the time. You’re sweating it, you’re giving it socks, you’re keeping on top of your, you know, your lifestyle really. And last year you had a bit of a challenge with your own mental health like many of us have.

Yeah, so I was meant to have got married last year. I started work in January at my local hospital in Porto and I’ve walked into what was known as norovirus to begin with, then a bed shortage and then obviously the global pandemic hit. It cost me my wedding in May.

We rebooked it for November. We were told we couldn’t have it in November and it was just hard. You know, I’ve seen some things that people shouldn’t see and, you know, it was a case of not being able to see family, not being able to see friends.

You know, that’s my best mate. I’ve only seen him three, probably five times in the last few months. So, yeah, my mental health took a bit of a battering and I tried to continue, tried to, you know, keep calm and carry on, as they say, but it was just difficult.

And in the end, I just needed to let it out. And that’s what I did. You know, it is really difficult.

And for many people, they hold it in. And I’ve spoken to you not long before, actually, you know, you kind of went, no, I need to step up and say I’m not doing well. And I know myself, I’m putting on that mask and, you know, I’m being the brave one and saying I’m OK when underneath you’re not OK.

And for me, it bubbles away in different ways. But how did that kind of manifest in you? Was it, you know, true feeling down on yourself or not being able to manage daily tasks or how did it manifest? It was it was a lot of things all wrapped up. It was, you know, I went from being able to train whenever I wanted.

Admittedly, last year, I didn’t train because of work and everything else. But, you know, it was almost as though having my freedom snatched away. I wasn’t going to football with the lads as much and not seeing family.

And every day I was waking up and I was just like, God, I’m awake. And not wanting, I wasn’t, you know, I love my job. This is the best job I’ve ever had.

It’s the worst money I’ve ever made, but it’s the best job I’ve ever had. I love it. And I love, if I could work 70 hours every week, I probably would, just for the love of the job.

And I was waking up and I’d been redeployed because of the pandemic. And I just had no, I had nothing. I was just flat.

And I just sat there one day, I’m going to the bed and I just cried and let it out in front of Mildred Ross. And she was just like, do you think you need help? I’m like, no, no, I’ve just got to keep on going on. I can’t stop.

If I stop, I’m going to stop properly. And I was very fortunate in the management that I work for, they’re all lads and guys about my age, early 30s, late 30s. And I’ve gone in and they’ve just said, what’s the matter? I said, nothing, I’m fine.

Leave me alone. Give me a job and I’ll do my job because I don’t want to stop. And then I’ve come back off the first task that they gave me.

I’ve come back into the office and they’ve closed the door behind me and said, right, sit down. What’s happening? You’re not yourself. We can see it in my life.

You need to talk to us because you can’t help me unless you talk to us. So I was very fortunate in that the three managers there were Tom, Ben and Aminata. And I just said, look, I just need a couple of days.

I just need a couple of days to do my thing, go home and just wallow in if I have to, just to get it out my system, make a doctor’s appointment and get help. And that’s what they let me do. They gave me two days emergency annual leave.

And yeah, it was a blessing really because I then was able to have a long weekend. So I had food to eat. I’ve got my tablets.

I’ve got myself sorted out. A couple of things that were bothering me I dealt with. And yeah, it just helped.

When I’d actually seen your post that you’d put up on Facebook, it really got me inside. It was like something reaching inside and squeezed my heart a little bit because in Ireland, I know, like I’m living in Spain now, but in Ireland, suicide is the biggest killer of men under 40 in Ireland, which is so unbelievably hard to digest. And I think of the situation we’re in with COVID and the return of COVID, the spikes that we’re having now, and we’ve got the winter blues on top of us.

We have isolation. People are finding out things about their relationship they didn’t know before. People are out of work with financial stress and worry.

And people watching this, you might have one person that will wake up tomorrow morning and go, I feel flat. And for them, what would you say is the best thing for them to do? Now, I’m not by any means qualified medically to give advice, but I have life advice. And the one thing I’d say is don’t ignore the signs.

The people around you and close to you will know them before you do. Like my other half, she can see me going in a slump a mile away. And she’ll tell me days before, you’re not yourself.

And I’m like, no, no, I’m fine. I’m fine. I’m fine.

No, you’re not yourself. Listen to what I’m saying. There’s absolutely no shame in admitting you need help.

That’s the biggest stigma out there, especially as men and middle-aged men. We’re not allowed to accept that we need help. It’s a stiff upper lip mentality.

And all just that and carry on. It don’t always work like that. So, yeah, like for me, I’m like, there is no shame at all.

Like, I would love one of my kids to tell me like you would, you know, if you’re struggling, tell me what is going on and tell me what I’m here. Open up, talk to me, you know, and I’m a communicator. I’m like, I just want you to speak.

But what is it with the stigma around mental health issues? And then it’s so paramount and so strong. And it’s important that we break it. It’s I think it just stems from the old days.

I think that back then, and it’s very, it’s very ignorant in the back in the old days. The men went to work, the women stayed at home and the men had no problems. And the women had problems, but they’re women, they have to get on with it.

And I think it’s really ignorant. So I was, I’ve always been an emotional, you know, I had my first emotional breakdown at 13 when I found out I had MS and I’ve been suffering with depression ever since. And I’ve got times, I’ve both times, you know, up until last October, I’d actually gone nearly four years without an antidepressant.

So I was quite proud of that. I’m not ashamed to say that I need that. You know, that’s the help we need sometimes.

You know, people go through things, people go through trauma, be it physical, mental, emotional, any kind of trauma. And ultimately we all still need help through it. And if it can’t come in a physical aspect, it can come from, you know, a medicinal one.

So there’s no shame in asking that help, ever. Not at all, ever. When you say about, you know, your other half, your fiancé would know and see it a mile away when you’re struggling.

I know myself, that’s the same with myself. And it’s for most people, when you’re in the hole, it’s so hard to see, you know, when you’re, you can see the wood from the trees. Yeah.

And isn’t it so hard to listen to, like, because my fiancé had said to me last summer, I really struggled. We’d gone into kind of overdrive and trying to create resources and work and locking ourselves down. And he said to me, he said, you’re not yourself.

And I didn’t want to listen to him. And in many ways, I kind of seen it as a sign of weakness. I was like, I’m not weak.

I’m not, I’m doing well. There’s nothing weak about that. You know, it’s, it’s just, if anything, a sign of incredible integrity and strength to have you not need a bit of help.

Like Kelly, she’s been so good. Like she can spot me a mile away if I’m having a bad day or if I’m not myself. And sometimes she’ll even recommend, you know, get out on my bike or go upstairs and go on the PlayStation for an hour, just to take some time out.

And she’ll be the same as well. You know, she, she has days like this and I can spot it. And it’s, when you’re in a partnership, like, you tend to know these things.

So I’m, I’m, I’m really lucky. Yeah. The environment that you work in, I love what you said to me just before we actually started this interview that, you know, you jumped into this job and, and you actually said it here as well in the interview, how much you love it.

And you were one of those, like myself, one of those patients on the trolley where I was praying and blessing myself that the portal would be able to move my large, heavy body to the surgical, you know, room. And, and now you’re actually doing that and you’re, you said yourself, and I’ve seen it and I think it’s lovely, you’re giving back to other people and having conversations with them and chatting with them about, you know, their days and stuff and making a difference. And, and that environment has probably changed now with COVID and what’s that like? Well, I’m, I’m based in Phoenix.

So I get to do the work with bariatric patients. I get to do the work with patients that are having all kinds of operations, which is why I love working where I work. I see the consultant that operated on me.

I see the operating team that operated on me as well, and their colleagues now, which is, that’s pretty awesome. So I get to do the work with them. I get to explain to them that, you know, I’ve done this work myself.

I’ll continue to be bigger than what you are. And I’m here. So, great hands.

And it is the most rewarding job. It really is. And, you know, it’s been commented recently.

I mean, this came up to me and just said, somebody came up to me today and said that you’re far too old. I said, what? I said, what’s, what’s the problem with that? I walk down the corridor of St. Michelin most days because I enjoy it. I’m there.

And I say, we’re pointing to absolutely everybody I walk past because that’s just me. And sometimes people just need to know that, you know, we’re all in it together in that place. We’ve all got to work together.

We’ve all got a face to face with ourselves. We can face it as a team as well. That’s it.

I know you’re spot on when you say a team. Like, I think of our team of UCPO, phenomenal group of the majority of patients who, you know, just come together when they need to. And, you know, spread the word and have chats like we’re having now.

And then I think of my family as a team as well. And as you said about yourself and Kelly, and it’s all about the communication and keeping the channels opening and open. And like, I think it’s a very predominant thing when a woman tells a man that they’re fine, they’re generally not fine.

But that goes the other way as well. Well, don’t get me wrong. I mean, we, at times, we are communication shocking.

You know, that’s part and parcel of being in a relationship. Sometimes we don’t communicate and then you realise you haven’t communicated and start communicating again. And, you know, neither of us are perfect.

Admittedly, I probably make the proper performance here. But, you know, I spent so long not in a relationship and not being with somebody that even now, three years, I’m still learning. I’m still learning how to be a good boyfriend, how to be on site.

And, you know, when I spent so long shutting myself away, you know, the world changed. You know, four and a half years in my own prison, not an institution, by the way. I just want to make that clear.

I’m not a former prisoner. I let myself away to the side of myself, not because I was a bad lad. But, you know, the whole world seems to have changed in those four years.

And, you know, I’ve got to learn. And I’ve had to learn how to become a better person. You know, I’m very fortunate in the fact that Kelly knew me for what I am.

You know, she saw my story. She, you know, she got to be saying how I like looking at my girlfriend now. And I’ve met the love of my life on Facebook, which I’ve never thought I’d do.

She’s a fantastic mother. She’s a fantastic partner and nurse. And she’s working through this pandemic as well.

And I think a lot of people need to realise how difficult it is for us in there. But a lot of us are struggling and a lot of us are trying to be tough mentally. And, you know, we all need that bit of help.

Yeah, I think two points before I let you get back to family life and lockdown. Two points that you’ve made there is, in a roundabout way, you’ve brought in the resilience that you actually have. And one thing I’d always say about us as patients of motor obesity, like I know how to self-isolate better than anybody, because I always wanted to be the girl on the scene at the back of the class when I was, you know, a few hundred kilos.

I always was the girl that kind of wanted to go shopping late at night so there wasn’t so many people around and that kind of thing. And I think from that, you’ve created this resilience in yourself where you’ve almost kind of said, these are the things I’m grateful for now. And those little things like being present in the moment, having your partner beside you, having somebody under your end of the thumb.

I think they’re the things that people need to be reminded of right now. As you said, walking down the corridor is whistling because you can’t walk down the corridor and help somebody. It’s just sometimes the positivity grief, that’s the thing.

It manifests in grief just as much as depression does. So if you can show a bit of positivity, even to somebody that you’ve never met before, somebody that you’ve never seen before, if you can show them that it’s not a bad day, you know, there is something to be thankful for and you can have a smile on your face just for the sake of having a smile on your face. That’s not a bad place to be.

It really isn’t. You know, Paul, you’re brave and quite phenomenal in my eyes. You’re a young man who has gone through one heck of a journey and had many, many challenges.

And you’re so open and such a great communicator about where you were, where you’ve been, where you are now. And all I can say is I wish you and Kelly and the family the very best in continued lockdown. And I’m so grateful that you’re looking so well and you’re all healthy and best of luck in work and all the challenges that brings.

Cheers, Vicky. Thank you. You are very welcome back.

And a huge thank you to Paul Stevenson for that quite fantastic interview and his reflections on his own experience with not only his obesity, but his mental health challenges that he faced. And it’s great for a young man to come on board and share that. Now, I want to jump across to our fantastic panel, our first panel.

And you can see we have lined up the one and only Mr. Ken Clare from the UK. Ken is, of course, the ECPO chairman. He is also Obesity UK director.

He is an ASO trustee. He’s a real jack of all trades, actually, Kenneth. Obesity advocate and he is a bipolar patient as well.

Also, we have Solveig. Actually, Solveig, I know you pronounced your name wrong there. Solveig Sigridóttir from Iceland.

She is the ECPO president, of course. She is an author. She is an obesity advocate.

She is a mum. She is a tireless, strong and passionate volunteer. And she is also an MS patient.

Now, joining us also, we are delighted to have Tineke Malema from the Netherlands. Tineke, you’re very welcome along. You sit on the Gamian board of directors.

You’re also a bipolar strong advocate. And I’ve actually caught up with you and a lot of the work you do because you’re actually the coordinator for Plus Minus Young since 2017, combining direct contact with fellow sufferers to national policy via the Mind Young platform. Tineke, you’re very welcome along.

Now, I want to just pull up a question that we’ve had already, which is great. And I think the conversation is really around mental health and stigma. And does mental health stigma still exist? Now, I know with obesity, we have a lot of stigma.

But Tineke, perhaps you could delve into the stigma that exists around mental health. You see two things with stigma that still exist. One is underestimated, that you don’t know.

In my case, it’s depression. I mainly have problems with depression. The people underestimate how hard it is to live your life when you have a depression.

Or it’s overestimated. And like with bipolar disease, people think you’re crazy and strange. You can’t count on them and stuff like that.

So that’s the two sides. Yeah, it is really, really hard, isn’t it? Ken, I want to just ask you as a gentleman who has also been a mental health nurse and worked in that environment, that stigma, how tough was that there? And how do you manage that? Well, I think going back some 40 years, mental health services were very different. But the public’s attitude haven’t changed at the same pace.

And I think the way behind. And I think as a man, I think Paul did a really good interview. And he spoke a lot about the differences between men and women.

And men aren’t always good at opening up and sharing. And it’s OK not to be OK. Yeah.

And I’ve got a good support network and I kick into that when I need it. And that’s vital. That really is kind of the gem, isn’t it? And that’s what Paul said.

It’s, you know, he’d gone into work and he wasn’t speaking about it. And when he did, he got the support. It’s probably the fear of verbalising that.

And Solveig, I just want to get your thoughts on it as well. You’re not only a fantastic advocate, but you’re a mum as well. And I know myself with three children.

I’ve had my challenges, especially with the boys, where they just don’t open up to us. No, this is true. And, you know, what an amazing interview with Paul.

He nearly made me to tears. Not by, I mean, happy tears. So opening up like that, this is what is education.

This is what makes people believe that mental health is serious. And if you open up like that, like Paul did, this is how we reduce stigma around mental health. Yes, and probably we all know, like in the COVID months, it’s been hard because it’s homeschooling.

Everybody’s at home. It’s not used to be like that. So, I mean, you have to be friends and at the same time, you have to be a mum.

So there’s a little bit risky, you know, you have to be a mum and you have to be a friend and you have to be educated and you have to be the cook and you have to be the cleaner and you have to be with a smile on your face. And you have to make them to open up and talk to you. And I mean, COVID has been really tough, I think, on the young generation.

And I think we have to realise that the young generation, they are quite smart. I think they are more open to open up with their feelings. I mean, my generation is the tough one.

We should just be, you know, holding up. And so, and I think, you know, it’s true. Yeah, yeah, it really is true.

Like I even look at my own experiences and I’ve spoken about and have my own breakdown and going back about six years ago. And I didn’t want to speak out about it because I really felt that I was just burdening people. I was going to make their lives worse by, you know, putting the weight of my depression and anxiety on them.

When in actual fact, it was the opposite way around and they needed to hear what I was going through. So by opening up, you’re helping others, you’re helping your children, you’re helping nephews and nieces who may actually be burdening with it, you know. And let’s get out and speak in public about it.

Let’s talk about it. Let’s get it out there that it is okay. And she was kind of said not be okay.

And I just think there’s a question come in here from Bernadette. And she said that she’d asked for help from her GP recently. Now, Bernadette is an obesity advocate.

And she said there are things that she wasn’t dealing with very well. The first thing he insisted on doing was weighing her and working out her BMI. And it was, she said, I was over 60, but she’s now 24 with lots of excess skin.

And his question, his answer to her request was keep losing weight. And I think, as you rightly said there, Solveig, as you rightly said, the challenge that we have is that we have a lot of people with that older mentality of, you know, it’s, you know, let’s not talk about that. Let’s not face what’s right in front of us.

But in actual fact, that’s not the answer. And for some of the healthcare providers that may be tuned in to make it, I just want to ask, you know, what would your advice be to that healthcare professional kind of world where somebody goes in and says, I’m struggling. Like Paul said, I’m flat, I’m depressed right now.

What would your advice be to kind of those healthcare providers? I think it’s important that you open up and keep an open mind to the person and always ask how, just how are you doing? And make like an open discussion about it and make sure that you have a situation where you have trust with your patient. And that she trusts you enough to make sure you are taking serious, when you make such a, when you mention like you’re not feeling well or you’re depressed or stuff that you just let them talk about it. That’s the most important thing that you can openly talk about it.

And you’re not immediately coming with ways to help, but just openly talk about it. That is so true. And I think you hit the nail on the head there.

Isn’t there that trust between yourself and your healthcare providers, Niké, that, you know, it’s important that as a patient, you go in and you know, they’re actively listening to you, that they’re not assuming that they know what is going on in your mind, that they listen and they work on that relationship. Because when it comes to, I know for ourselves in the obesity world, it’s lifelong. When you have a mental health illness, this is lifelong.

And this is something that you and your healthcare provider are going to have to work with for the rest of, and manage the rest of your life. But actually, just while I have you here, Niké, because we did have a question in that says, do you think it’s harder to speak to a healthcare provider or a family member or somebody you love? So is it easier to speak to one or the other? For me, it’s easier to speak to a healthcare provider, because I know those people are there for you, and you don’t burden them with your feelings. Because earlier, you were talking about family and talking to family.

And then I immediately, the thing that’s hard when you have a chronic disease, like with bipolar disease, is that the pressure you put on your loved ones, like my boyfriend, I have a boyfriend for 18 years. And what I think is, when I have come into a depression again, I’ve always find it very hard to talk to him in the beginning and say that I’m depressed, because I feel that he will be sad for me and that he will, how do you say it, he will be worried about me. Yeah, I completely get that.

I have exactly the same experience myself going back last year, and not wanting to worry people who are already probably worried about the situation we’re in. But people who love you will respect you coming to them and telling them and what you’re so right about the healthcare provider. And I just want to throw that across to Ken there, having worked in that area as a, I suppose, a mental health nurse, Ken, and also having bipolar.

And did you find that people kind of opened up easier probably to yourself and then from your own perspective, is it easier to speak to your GP or your therapist? Well, I think that when you have something like bipolar, this has been my experience. If you tell someone, they either walk two steps closer or five steps away. And they either want to talk about it, want to understand it, it’s interesting or to help you.

Other people are just terrified. And I think what makes it worse is kind of some of the shame and the stigma inside me that it’s not easy to have this illness. And when I became a mental health nurse, 40 years ago, I never thought I would end up with this illness.

And I’m on four tablets, four different drugs for that. And I go to a GP, a primary care doctor. He’s great.

And he’s retiring at the end of next month. And he’s been my doctor for 30 years. That’s hard.

But I’m lucky. I’m in a big inner city practice. And there are other nurses and doctors to choose.

Some of them like mental health. And I’ve got better skills. I think, though, what you said there just goes to show the importance of that relationship between the patient and the doctor.

That relationship is so important. And you’ve had that wonderful experience for 30 years where you had somebody that you could actually speak openly to and share those inner thoughts. Because when you’re in your own mind, it can be extremely challenging to verbalize that to somebody other than, and I suppose somebody who doesn’t understand what bipolar is or how deep a depression can be or how bad anxiety can be.

When you have an anxiety attack, some people don’t realize, they think, oh, you’re having a panic attack. You’re fine. Just take a deep breath.

You’ll be fine. But for me, when I have an anxiety attack, I actually feel as if that’s it. I’m going to have a heart attack.

I’m gone. I’m gone. So it’s very easy to speak to the health care provider who may understand.

And again, it really is about the trust. And Salveg, I just want to jump across to yourself as well, because we’re end up being an obesity patient advocate, and we are always struggling with our obesity and our mental health. And being a dear friend of mine and being a mother is really, really hard.

And how do you take that on? I know what I could say about my children, but how do you take that on as a parent? And how do you encourage them to, if not speak to you, speak to their health care provider? What can we do? In my opinion, you have to find the right health care provider for your children. This is especially important for a child who is not that open to open up. So it took me a while to get actually a health care provider that worked.

And I would say never give up. The help is out there. But you just have to listen to your child.

And you have to listen to the health care provider. Some may not be useful. Some may be.

And this is something that I was in the beginning, because I had to use, I have over the years had to have the help from health care provider, both from mental health and physical health. And so I knew it myself. But I think many parents, they are really worried about their children.

And they go to the GPs and maybe that’s not the right help. And they think of the child that is the failure. But never give up.

Just find the right help. It’s out there. It’s everywhere.

Support groups. For example, in Iceland, we have a support group called Kjeta. It’s for younger generation and the older as well.

But I think the younger generation actually started it. So I would say find support. This is so important.

It really is, actually. And we’ve had a question in from Jane. Now, Jane said, how do you handle the stigma from family and friends? When they say things like, oh, my God, what is wrong with you now? Which I think I probably had when I was at my worst.

And people would say, you were fine yesterday. Get out of bed. Have a shower.

Just get on your way. And I know we may not have the answer to this question. But perhaps, Tineke, how do young people kind of face that when somebody says, just get over it.

You’ll be OK. Depends on who’s saying that kind of stuff. It’s someone close to me.

I’ve had someone say to me when I said I had the depression again. She said, well, you should have known because you’re bipolar. And I was totally caught off guard.

So I didn’t say anything at that moment. But I did cognitive behavioral therapy. And then I learned to think about it.

And I thought about what she said. And then in the end, I said, it’s more important. I know that she cares about me.

So it’s more important to keep the relationship good and talk about this. Because she just doesn’t understand. And sometimes people just don’t understand what they say.

And then it’s better to just say, let it be. And don’t talk about it. But sometimes when it hurts you, you can say what it does to you and explain more about your disease.

That’s sometimes with good examples. Like I sometimes use the, how do you call it? The sugar disease, the diabetes. Diabetes.

You have the diabetes, the high sugar and the low sugars. And I compare it to bipolar disease with high manic episodes and depressions. And then it’s easier for people to understand.

I think actually what you’ve pointed out there is that there is a huge need for education around mental illnesses, and particularly in the likes of bipolar. And I think people assume depression is just a stint that some people get over naturally. Go to bed, wake up tomorrow and you’ll be fine.

It’s a bad day. But those bad days can turn into a bad month. And that’s where we need to open up and educate and talk to people about it.

So I’m conscious that we have to move to our next interview. And actually, Tinneke is on our next interview as well, which I’m delighted to announce. Tinneke, thank you for being a part of our first panel.

Ken and Solveig, we will see you back after the next interview. But this interview will be led, I suppose, particularly by Nigel, Olissa and Tinneke. Now, when I actually looked at this interview, I thought how fantastic would it be as we’re talking about mental health, we’re talking about COVID fatigue, rising mental health across the globe.

And Nigel Olissa being the executive director of GAMI in Europe. He’s a husband. He’s a dad of three boys.

He’s a passionate advocate on all things relating to mental health across Europe. And he joins Tinneke now to share with us his thoughts and their experiences. Hello, my name is Nigel Olissa.

I’m the executive director of GAMI in Europe. GAMI in Europe is a non-for-profit patient pan-European organization representing and advocating the interests and rights of persons affected by mental ill health. Our main activities include awareness raising, education and partnership and capacity building.

Overreaching themes in our works relate to anti-stigma, discrimination and patients’ rights. We have over 66 member states, member organizations from 26 EU member states. And our members contribute to generally our activities.

And we make sure that most of the projects that GAMI in Europe work on are led by our members. That is pretty fantastic, Nigel. I always say when I do my summary of what a CPO is, I think I have it quite quick and nailed down, but you’re better.

You are definitely much better than I am. Thank you so much. I want to introduce as well, we’ve got Tinneke here as well with us.

Now, you are a board member and also a patient. Tell us a bit about yourself. I’m a board member for GAMI and I am in that capacity.

I’m also in the research and development committee and I do a lot of sharing of patient experience. I do it for GAMI and then they get questions of sharing your experience of what it is to be a patient. I’m bipolar, but I have a type where I mainly have depressions and that is for me, it means that I have a depression every year and I have to battle it out every year to become stable again.

And now at this moment, I also have a little, a slight depression, not very deep, but I’m still battling it with COVID. Also, so that’s a little bit harder to get the structure in my life right and stand up at the right time and do your thing and work. Yeah, do you know, Tinneke, I just want to listen to you there.

Like for myself, living with obesity all my life, having depression and anxiety, mental health, I’ve been challenged all my life. And when I listen to you speaking, you’re expecting that every year, that this is on the horizon for you. And lockdown has had lots of positives and lots of minuses for people.

For myself, I’m happy that I’m not traveling, I’m more at home with my family, which has just been amazing. I’m not jumping in and out of airplanes and trains and everything else. But what has it been like for yourself as a bipolar patient as well? COVID, lockdown, has it been good or bad? Well, there is one thing that was good because I was working too much.

I was just working without taking a break. And now I had in the beginning of COVID, I had a little bit less work because I do a lot of work on the website, posting activities and activities were a lot less. And now then I had to arrange my work differently because I don’t work all day anymore.

And that was a way to rearrange it. And then I noticed that it is better to do it in blocks of one hour for two hours and then stop and have a break and then work again for a few hours. And I noticed that I was feeling much better and didn’t have a headache at the end of the working.

So that is something that’s been very good. And what also is helping is that my boyfriend is working at home and he goes and works in the office upstairs. And then he comes down for lunch and we lunch together.

And then it helps me to start up and do my things and helps me motivate myself also to do things. So it helps me with my depression because I know he’s there and he’s coming down for tea and stuff. And that makes me happy.

And we have a little bit of a talk and I’m not that lonely at home. So that’s nice. It definitely makes a difference.

And I think this actually goes for everybody. You know, having that more routine definitely helps our mental health, you know, not having as much pressure to sit in traffic and get to an office and working late and all that kind of thing. But as well as that, I’m just thinking about like across Europe, really, Nigel, the patient community there.

Are we seeing a real dip in mental health and depression, I suppose, would probably be the most prominent one. But I’m thinking people like Tirike, like many of our members that have bipolar or various other disorders, what’s happening there? Well, I mean, from what we’ve heard, I know when we during the initial stage of COVID in March, we reached out to a lot of our members just to sort of see exactly what they needed in terms of help, because we knew that there was a lockdown. And a lot of our members, their way of reaching out and getting support is to go to community centers because they’re mainly community based centers where they go and then they meet other patients.

They meet their psychiatrists where they actually get, you know, some treatments. And so that wasn’t the case anymore. A lot of our centers are now where kind of almost became like, you know, help centers.

And we had issues where in Eastern Europe, a lot of the patients were not able to reach the centers because they didn’t have mobile phones or they don’t have any sort of connectivity to the center. So that was very difficult. And so what we are thinking now is to, I mean, from what our members have said, is that they need some kind of a peer support program, which we’re trying to work on right now.

And that’s one of the main activities that Gaming Europe will be putting together, sort of a virtual platform so that, you know, we can set up a system whereby patients can understand and learn from each other. That experience is very, very important. We’ve heard that, you know, I mean, in some countries it actually did go well, you know, for example, in Malta, where they have a hostel system.

So a lot of the patients went to a hostel and they were taken care of in those hostels. So, you know, that was positive in that sense. But in the Eastern European side, I think we had a lot of negative replies and, you know, it’s a pity.

But a lot of our members did reach out. They still went ahead and did what they could do to support the patients, but, you know, in a more difficult, you know, way. So, yes, depression has been increasing quite a lot.

We know that, you know, a lot of the patients do not actually see the end of, you know, COVID at the moment. So that’s very detrimental on health. We know that the pandemic is there to stay.

The COVID is there to stay. There’s a lot of frustration. There’s a lot of unemployment.

And we know that patients do not see, you know, the end of the road, you know, and that’s the main problem. We do not see the end of the road. So what we are seeking now is a lot of support from the Commission, a lot of support from member states, government, you know, to, you know, to try and see what they can do to support patients.

Because what we’re looking at is not just a COVID pandemic, but it’s going to become a mental health pandemic going forward. Yeah, and I think when you actually, just when you say that, it makes me think about we’ve got COVID-19. For myself, I have obesity, and I have my own mental health, mental ill health, mental health disorders and depression and that.

And I’ve heard people say this of like, it’s, we’ve got a syndemic on our hands, where we have all of these pandemics merging, which is incredibly worrying. And when I think about even the place that many people are in right now, some people have lost their jobs, evicted from their homes. You know, for women who may be in a, or men who may be in an abusive relationship, their partner is now home with them, which is making it worse for them and their children and their family.

And people have lost loved ones, people have lost pots of money and have nothing to feed their families. And although we have these great routines for people like me, I’m like, thank heavens, I’m safe. And I have my job, my partner has lost his job.

And for people like me, I’m like, yes, this is great. But for those people, that must be incredibly difficult. And what, you know, talking about this is wonderful.

And what else can we, what can we actually do to help people? And I know, Tineke, like you said about having the support of your partner at home, having that routine of lunchtime and that. Yeah. But I put it to both of you, you know, for people that are watching, and we want to break the stigma of mental health.

You know, what can we actually do to help people? Well, I think I have the help. It’s important that you have someone around you where you can talk to, where you can have support. And the best support is with fellow sufferers.

So that’s something that my organization and where I also work in the Netherlands is also doing, is making support groups online or available for people, trying to get people to have contacts via apps or stuff so that you can talk about your feelings. Because it’s what we talked earlier about. It’s a lot of stress of all those different negative things coming out of COVID that really are detrimental to everybody’s mental health.

So it’s very important that you can talk to people who understand you and can help you with good tips and tricks and where you can just talk and get it off your chest. Yeah. That’s true.

I mean, I just recommend what Tineke just said here. You know, the talking is very important. So if you have a family friend or if you have a family care that supports you, I think it’s good that you continue to have that conversation because they can also be having difficulties during this pandemic.

You know, the peer support groups is an excellent way to get support and tips as well, which is why Gaming Europe has now on our website, we have the COVID-19 resource platform where we have now integrated a lot of information to support not just patients, but anyone else who is dealing with difficulties during this crisis. I think it’s very important that we have this. We’re very open about the discussions with other patient groups to see how we can try and support patients going forward.

We just came up with a video on quality of life of patients, which I think it’s a great video, Tineke being one of the persons there. I think the stigma around mental health is still very, you know, very high. And I think this is one way we want to try and address this situation by making sure that the voices of patients are heard and heard as loud as possible.

Yeah. Do you know, isn’t it fantastic when you think about the fact that we have these peer support groups now where going back so many years ago, it was just so wrong to speak about not feeling okay in your own mind, not feeling like you could get out of bed and get dressed. And I think for even for myself, when I’ve gone through my own depressions, the one thing I do is I don’t answer the text messages from friends.

I hide from the phone. I, you know, I pull back. I want to stay in bed.

I, you know, it’s so hard to actually speak out. But when you do, the relief is amazing. The support you get is phenomenal.

And that’s what it’s about. It’s getting people to open up, really, you know. And I think as well, like we can talk about what we can do.

We offer our peer support groups. You guys have this going on across Europe as well. But I suppose from the side of policy and the European Commission, Nigel, and that, you know, we need that support there.

And so what is what is Gamian looking at there? And what are you guys kind of reaching towards there on that level? Yeah, well, I mean, we have been reaching out to the Commission for quite a while now. And we know that mental health is a member state constituency. The Commission has done quite a lot now since the pandemic to make sure that, you know, mental health is addressed.

And we commend the European Commission, you know, for taking attention to mental health and the steps that they are currently being taken to adhere to mental health needs. But Gamian Europe will continue, continues to advocate, you know, for the urgent need for a dedicated and specific EU mental health strategy. Such a strategy could help member states, you know, prepare for the urgent increasing need for prevention of mental ill health and the promotion of mental health.

So that’s that’s something that we’ve been, you know, driving forward, you know, and the kind of message we’ve been trying to get across via our MEP alliance, for instance, via the co-chairs as well. And we’re hoping that, you know, at some point, you know, discussions will start taking place around this, and hopefully it can be tabled in the Council, you know, for something to be done on the member state level, because I think we need to fight mental health together, and not just fight mental health, you know, individually by different member states. It has to be mental health is everyone’s business, and we need to make mental health everyone’s business.

Yeah. And, you know, as we were talking just before we recorded, we were saying, like, we have this shared responsibility towards mental health and ensuring that in one and two years time, that, you know, we have plans in place, we have support in place, and that people can speak and people can get the treatment that they need, and that we break down, continue to break down the stigma. And I’m just grateful for you guys for being here, for coming on board and sharing your thoughts with us.

We’re going to jump to our panel in a moment and kind of get their feedback as questions have been coming in on Twitter and that, about this kind of conversation, and we’re going to pop your website address up again on the bottom of the screen, just so everybody can go and check you guys out and see what you’re doing. And I want to let you go, and I want to thank you so much for both sharing, and Tineke, I absolutely love your story. Give your boyfriend our very best.

No, farewell. And have a wonderful evening. Thank you, Vicky.

Thank you for having us. And you’re welcome back. What a fantastic discussion, and a huge thank you to Nigel and Tineke from GAMI in Europe, who have been just excellent in sharing what they’re doing and the work they’re doing.

So I want to hop over to their website and see the resources, and a great conversation as well around peer support. And I think it’s important that we could jump into our panel now and invite our new guest, who is Miss Anne Vincent, who is joining Ken and Solveig. Now, Anne, you are not only a postgraduate student teacher, you’re a community counsellor, a member of the All Wales Clinical Advisory Group to the Obesity Strategy in Wales, a steering group member of OEN, the Obesity Empowerment Network, and a graduate member of the British Psychological Society.

And not only that, but you’re a bariatric patient like myself, and you have a passion for research in the psychology of people living with obesity to drive change in this very stigmatising world. Now, you’re welcome along. And I want to just go to some of the questions that have popped up on the screen.

Now, you’ll have to excuse me, I’m still a little bit sniffly. I’ve got a head cold going on. So if I’m not clear, I apologise.

But Laura, thank you very much for your comments to patient stories around the world. She said it just enforces the chronic disease of obesity and showing that it’s really universal. And I think actually one of the comments that we had, one of the questions we had was, how different are the coping strategies between, say, for instance, obesity stigma and mental health stigma and what we actually do to address them? Now, Anne, probably as our new guest, I’ll invite you in to ask your thoughts around that kind of question.

Is there a difference between mental health and obesity coping strategies? Well, thanks for inviting me on, Vicky. From my point of view, I’m not sure that there is a difference. For me, stigma is stigma and it hurts in the same way no matter what it’s about.

So my coping strategies, I guess, are in place from the issue, first of all, the issue of obesity, because I’ve lived with that all of my life. So I learnt to deal with that. And to start with, my coping strategies were not good ones.

I hid away. And as my mental health deteriorated, I suppose that I’ve done the same thing with that. Luckily for me, I’ve never been sort of able to be a social person.

I’ve always been more solitary person. So the sort of issues surrounding COVID on lockdown and things like that hasn’t come with as much difficulty for me as what it has been for a great many people. So I consider myself fortunate in that respect.

Absolutely. You’ll have to excuse me. I may be coughing throughout.

I just want to jump back to our panel now, because when I look at, I suppose, the interview that we had with Nigel and Nicky, what Anne just spoke about there, there has been positives and there has been negatives when it came to the lockdown. And Ken, you really cocooned and shielded. What have the positives been for you and perhaps what have the negatives been? It’s very difficult, isn’t it, to talk about positives about such a horrendous situation.

What I’ve tried to do for me is to go back to basics and to focus in on some core things. For me, both with obesity and with bipolar, sleep is vital. And if I don’t get a sort of, I think you’ve met me when I’m not had a good night’s sleep when we’ve been traveling around the world.

And you know, that’s when I give you a bucket of coffee. And that throws me off for the whole day. I’ve tried to maintain a routine because I like that.

I’ve got a really good support network around the problems I’ve had with alcohol. And that’s all gone online to Zoom meetings. And I’ve taken, I’ve got a great deal of support from organizing support groups for people living with obesity, which we’ve been doing twice a week now.

And I think that that’s been something that it’s, you know, making a positive for me out of what was a negative situation. I think I’m a little bit like Anne in that I’m quite happy in my own company sometimes, although people probably wouldn’t think that. But it is a challenge when your whole working routine is thrown out.

And I think that reflected with someone today, I’m just blessed how fortunate we are in the lockdown. I think I can see people living not far away who are struggling. Yeah, very much so.

I think I look at what we’ve been through as a team. We locked down quite early where I suppose we had the beauty of our colleagues, Nia, so advising just how critical things were initially going back a year ago. So we stopped traveling and we really shielded and cocooned.

And I hope when you say that, you know, you’re quite happy in your own company, I’d call myself an introverted extrovert. People say, oh, you’re lovely and bubbly. And but I love to step back and just be myself and be with me and be in that my space, you know, and the positives, I think, Solveig, what have your positives been of kind of this lockdown? Because you love your hiking, you love getting out in Iceland and traipsing around in your boots and stuff.

What have been your positives and your negatives? You know, this is so funny. Today I asked my children, so what can you tell me about the positive impact of COVID on, you know, being on lockdown? And they both looked at me like, what are you talking about? Positive what? And we start to talk. And the outcome was fantastic.

We had so much to to be happy about. Yes, I like, obviously, the gym’s closed, all the health clinics are closed. So I had to do something.

So I started to practice yoga on my mat in my living room nearly every day. And, you know, yoga and bigger body is a challenge. But I’ve done it and I really like it.

And outdoor, oh my God, my daughter, she brought home, nine months ago, she came home with a labrador puppy. And I didn’t give a positive vibe for that because I thought, oh my God, I’m going to end up with that little one. But now he’s nine months old.

He’s bigger than a calf. And he needs to be taken out for walks and hikes and swimming and everything. And thankfully, here in Iceland, we are allowed to go out.

We have never had that kind of lockdown and we are not able to leave home. And Iceland is quite a big country with a small population. So we can go in many, many places near my home where there’s nobody, actually no one to go hiking, climb the mountains, you know, jump over rivers.

And next to my house, we have a big, huge river. So that’s really, really positive. But the negative has been that I miss my friends.

I miss my family. I miss hugs. I miss, you know, being together with people.

I miss my people in ECPO. I miss traveling. I miss so many things.

But so many things have come out actually positive because it gave me time to just relax and just to be and realize that you don’t have to be jumping around all the time. And this is something that I’ve never done before. Yeah, for me, that actually is a huge positive, having that time to process what’s going on in the world, to stand still for a while, to just send to yourself.

And for many people, it’s been so challenging because as a community of people who live with obesity, we have these routines in place where, you know, we’ll get out and do our exercise and we’ll push ourselves and we’ll try to, you know, challenge ourselves. And that’s hard when we’re stuck at home. Now, I’m just noticing we have a comment up here saying it’s lovely to listen to Paul and what he had said.

It was understood exactly where he was coming from. And a lot of people have suffered with their mental health. And this person in particular has for a few years.

And I also have now a very supportive husband, and he knows what I’m doing. And when I need more support from him, and it’s great that people can open up and speak to your partners. And one thing I do is I say, Matt, I need a snuggle because I energize myself from him.

I’m literally when I’m a little bit lost and down and struggling, I’m like, give me a hug because I feed off him. It’s almost like feeding off his energy. But I know myself when my mental health is at its worst, when it’s dipping, when that little inner voice pops up and starts challenging me and making me feel guilty.

And it’s how do you address that self-stigmatization? This was one of the questions that had popped up on social media is self-stigmatization. And do the panel have any thoughts on how to deal with this inner voice and the feelings of guilt? Now, Ken, I want to jump to you on that question because that is really, really hard, isn’t it? I think that some very wise people during the lockdown, several of them said to me, start practicing self-compassion. And being a bloke, I didn’t know what it meant.

So I had to Google it. And then I had to ask people what it meant and start caring about what is it about me and what’s inside. Because for most of my life, I’ve been my own worst critic.

And now I’m trying to be my best supporter. Or at least the best I can be. And actually, when you’re challenged with your mental health, that can be really, really hard to take a compliment and not only that, give yourself a compliment and practice saying to yourself, actually, I’ve done the best I can do for now.

And saying that in your own mind is really hard when you’ve got your thoughts going at 90 miles an hour. You know, you haven’t done this. You’re not good enough at that.

You know, pick up the pace. What are people thinking of you? I’m actually thinking of what people, I suppose I would be my own worst judge. And I would always think that, oh, people aren’t thinking I’m doing enough and not doing good enough.

And the question popped up there on the tweeter. And I said, do you feel you can be perceived as not capable in your own workplace or even in general when you share with colleagues that you have a mental illness? Now, Anne, I want to jump to yourself there because there’s a fear of speaking out and people thinking that you’re vulnerable. And if you’re vulnerable, perhaps you’re a liability or you’re not good enough.

Well, I just want to get your thoughts around that. Yes, I think that that is a real concern for a lot of us that have, you know, sort of suffered with mental health issues. I know certainly I’ve been in positions where my mental health hasn’t been fully understood and hasn’t been really people haven’t made the allowances that they should have done had they have known better.

So we’re moving again to the lack of education, the lack of knowledge around mental health. I think that there’s a huge comparison that could be made regarding obesity and mental health. And I know certainly when I was doing my psychology degree, part of the research that I did was around the relationship between obesity and the inability to feel self-compassion and to self-soothe.

I think many of us with obesity are incapable of self-soothing until somebody stands up and says, hey, this is not your fault. And I think once somebody’s actually got you to understand and accept that, things start to fall into place. And I think that whilst I still feel that I am vulnerable to stigma and I tend to see discrimination where it perhaps maybe isn’t, but I automatically jump to the wrong conclusion.

I think that I have learned because of this seeing the fact that it’s not my fault has allowed me to be a little bit kinder to myself and a little bit sort of more understanding of people who don’t understand my mental health or my obesity. It’s a work in progress. I’m still not 100% there, but at least I’m aware it’s not my fault.

Now, I think that’s actually so true. We assume, don’t we? We assume in our own mind that perhaps people are thinking this of us, are thinking ill of us. And it’s very easy to assume when you’re in that low, when you’re down on yourself.

And that kind of brings me to kind of the last question as we’ve only got a few minutes left. And as I look at how do you, if you are somebody who is struggling with their mental health at the moment or has a mental health illness, how do you, when you’re at that depth of despair, kind of open the conversation? How do you speak around mental health? How do you talk openly about it? And really, how do you set the scene? So Solveig, I’m going to jump to yourself because I know I could go on about this with my own three children and some of the conversations that we’ve tried to have and how they have and haven’t worked. But considering your own mental health and being a mom, what would be your guidance for other parents out there to open that conversation? First of all, listen to your children.

Don’t assume, don’t judge, listen and show some empathy. This is so important because we can tell them what to do and we can tell them again and again and again. And that’s our opinion and our thoughts.

But what is your child? What does your child need? Does it need proper support or does it just need a hug? But I would always say seek the right help. It took me actually quite a few years to get the right help for my children. And that is okay.

It’s not being a failure. It’s not being a failure as a mom. And this is important because I know that many parents who have children with mental health illness, they are, first of all, afraid and ashamed.

And we don’t have to. We’re doing our best. No, we’re definitely doing our best, all of us.

Yeah, seek help and actively listen, I think is a strong message there. And I think when we talk about obesity and mental health, Ken, I remember we were at a conference and I’m not sure where it was, I think it was in perhaps Vienna or something like that, or Prague. And somebody had said, at what point, you know, if you have obesity and your patient walks in, you know, do you advise them to, you know, set up an appointment with a psychologist? And between myself and yourself, I think we looked at each other as if to say, you know, immediately, of course.

And what would be your advice for somebody opening the conversation, perhaps with their health care provider, picking up the phone and making that appointment and what to say? Well, I think it’s about trying to be as open and as honest as you can possibly be. And I’ve learned some lessons about this recently and about myself and my family and listening better to the members of your family when they’re trying to tell you. Try to be on receive and give at the same time is quite hard, isn’t it? And receive and transmit.

And I think I’m very good at telling people and I need to listen more. But then when I need to go and see a doctor, I want a bit of both. And I think the thing that I want most is empathy, so they know what it might be like in my situation, or at least try to understand.

That’s it. Empathy, not sympathy. And Anne, I want to give you the last words as we have probably about a minute left before we we jump away.

And I say thank you for joining us. So Anne, what would be your last kind of thoughts and words to our audience out there? Don’t be ashamed. Don’t be afraid.

Go to your health care provider and say, I need you to help me. That’s all. Just help me.

Absolutely. Thank you so much, Anne. I want to say a huge thank you to our fantastic, our fun, dabby, dozy panel here who are tremendous.

It’s been a pleasure to have you guys on board. If you guys who are watching want to watch this back or share it, it will be available on the ECPO website, of course, from tomorrow. You can continue the conversation on hashtag ECPO patient lounge, where our comms team are chatting away there and engaging with people.

And as always, a huge thank you to our sponsors and our supporters, Nova Nordisk and EASO. And a humongous thank you to our comms team and Productions Bureau for making this broadcast happen. Stay safe, stay distance and see you in the next episode of the patient lounge.