Why Mental Health Matters in NF

00:00:18: Hello everybody and welcome to the first episode of The NF Podcast.

00:00:23: I'm Klaas Röhl, founder of NF Patients United and head of the Austrian organization NfKinder .I have a daughter who was diagnosed with NF-one when she was just child in two thousand ten.

00:00:36: That's where my involvement began.

00:00:38: At that time there wasn't any Australian patient organisation for neurofibromatosis or just few European ones Who weren't connected at all.

00:00:47: That's when I decided to found NFPatientsUnited and bring all member organizations together.

00:00:53: But that is enough about me, today we have a very special guest that i would like introduce you Matt Bolz Johnson.

00:01:00: Welcome Matt.

00:01:02: Hi Klaus!

00:01:03: Nice to be here

00:01:04: Matt, you hold a master of art in fine-art at the University College in London and worked as a production designer before changing your career.

00:01:14: In nineteen ninety nine when You started working in an acute mental health unit in London.

00:01:20: And you work fourteen years in a national Health Service to NHS in London being a hospital manager in Mental Health Trust and As a health commissioner.

00:01:30: So you were responsible for setting up the different NF services in the UK, for NF one and for NF two.

00:01:37: And then you joined Urodis in twenty fourteen as a health care research director later becoming mental health lead and healthcare advisor at Urodes You had led advocacy for rare disease community by shaping their development and delivery of European reference networks.

00:01:56: And specifically, you also ensured a patient-centered approach is at the heart of ERNs through developing European Patient Advocacy Group.

00:02:07: You also lead the advocacy work on mental health and Mental Wellbeing Partnership Network.

00:02:13: so you have done amazing work over the past years!

00:02:16: You've been very busy... So before we dive in I want to ask you first question.

00:02:23: Matt your career path is quite extraordinary as I just elaborated on.

00:02:28: Why did you leave the career of arts and product design, got into health sector?

00:02:39: It's not really a traditional career path one which probably in other countries like Germany is not really standard way to train one area then move across another especially so different from... the arts to health, but I took...I was doing a PhD and i took a bit of time out from doing theatre work.

00:03:02: Uh..and wanted to have this summer in London And I got a temping job at St Mary's Hospital in Paddington.

00:03:08: It is a mental-health unit for adults.

00:03:12: Um....I was a little nervous.

00:03:18: My mum gave me two bits of good advice.

00:03:20: I can never remember the first one, but the second one she said when i talked to her about The Mental Health Trust.

00:03:26: She said do it you'll learn About Humility and Humanity.

00:03:30: And I did It!

00:03:30: And I absolutely loved it... ...I loved working with the clients and supporting them.. ..and saw how a system Can institutionalise people.

00:03:41: So I stayed in health Working at the mental health trust.

00:03:47: utilize my creativity in the health service and my creativity I use every day even now to help design services, develop strategies.

00:03:59: So they're very transferable skills.

00:04:01: surprisingly...I always have a joke about collaborating with an opera singer and trying to get her in a dress she doesn't like.

00:04:09: It's a bit like working with pediatric neurosurgeons, you know.

00:04:13: it's transferable into personal skills and making people feel comfortable and maybe having a different perspective.

00:04:20: I think that is why i've done well in health because and I've never regretted it.

00:04:33: I love working with the patient community, i'm working in the UK NHS really gave me a lot of experience especially in my national commissioning role where you know first came into contact with rare conditions or ultra-rare conditions like neurofibrointosis type one and type two.

00:04:51: And once you connect with those communities its hard to step away from them.

00:04:57: they make feel welcome And you learn so much from them, they're inspiring people to collaborate with.

00:05:03: So yeah not a typical career path but I've loved every minute of it.

00:05:08: Fantastic!

00:05:09: Just realized we have another thing in common because also what was trained as an engineer and now i'm a patient advocate... ...so that's also not the traditional career path.

00:05:19: You joined Eurotis in twenty fourteen?

00:05:22: For those listeners who are not familiar with your work can maybe talk about their work.

00:05:29: So, you know going back Eurotis was found in nineteen ninety seven and at the time certain patient groups like the hemophilia community assisted fibrosis Community were well developed because there was a critical mass of cases And but for a lot of rare conditions they would You know The individuals affected.

00:05:48: The prevalence is really low.

00:05:49: so it's easy for health systems or policy makers to focus on the Ninety-nine percent of the need of the population.

00:05:58: And those individuals who actually are affected by some of the most challenging disorders fall through the cracks and they're easy ignored.

00:06:09: So what Eurority really did from when its conception was to bring, be a focal point for all the people affected with the rare condition to come together To connect Some of those individuals then set up patient groups.

00:06:24: You started seeing the critical mass everyone living with the rare condition.

00:06:29: So Urodis, I think was a catalyst and a nod in their national organization for red disorders in the US...I think they were also about at the same time.

00:06:40: They really brought together community to be seen.

00:06:44: And now we can say there's three hundred million people living with a rare condition around the world.

00:06:51: That's hard for policymakers to ignore.

00:06:53: so urodis is an umbrella of community of over a thousand patient groups in seventy four countries, and it's been the community which I think you step into.

00:07:07: You see remarkable leadership endeavors where people step forward retrain and learn how to engage with industry, push research through so you end up with new therapies going through clinical trials for their conditions.

00:07:26: You see extraordinary achievements from the rare disease community.

00:07:30: I think that's so inspiring.

00:07:33: in all of other public health areas can learn from rare conditions.

00:07:39: Definitely, definitely.

00:07:40: There's so much to be learned in rare diseases and many unanswered questions still to be discovered.

00:07:46: I just thought about how...I met you for the first time.

00:07:49: there was a beautiful Ljubljana Slovenia at conference around cross-border healthcare directive which is basically what now European reference networks are based on.

00:08:01: Can we talk little bit of your role setting up European reference network especially the one that is responsible for NF, the ERN Centuris?

00:08:12: So I left the NHS and moved to Brussels.

00:08:15: And Jan was one of the first people... Jan Nakam!

00:08:19: ...I met and Enrique Tarall at The Commission.

00:08:23: Basically my National Commission role in the UK were setting up national services or networks for ultra rare conditions.

00:08:32: so i had some experience getting my hands dirty on how to set-up a network –a clinical network–.

00:08:37: what's the value?

00:08:38: Where is their aspects which have real value and benefit, where it's a complete waste of time?

00:08:44: And Jan saw that experience at the time when ERNs were just an idea in legislation.

00:08:50: We hadn't even got the delegated decision to set them up.

00:08:54: So I started with Eurordis When that idea was within the legislation and Jan hired me.

00:09:02: I've been working, worked on the year-ends for basically twelve years and really the first thing we did as a community.

00:09:10: so in what The Cross-Border Healthcare Directive did was there's always cross-border collaboration research but never healthcare.

00:09:18: that is sovereignty of each country.

00:09:20: And What the Cross-borded Health Care Directive Did Was Set the Presidents That It Is Fine & Okay For Cross Border Voluntary Collaboration Between Member States In rare diseases with the ERNs.

00:09:34: And so that space of collaboration in health, in rare diseases never happened before and the ERMs were being set up in that space.

00:09:45: So we saw it tonight.

00:09:47: you know Jan was great.

00:09:49: he always pushed me to think big.

00:09:51: It's amazing when you think what actually can achieve is quite remarkable.

00:09:57: The first bit of the implementation by the commission who they were responsible for was to do a call, set up a project.

00:10:06: To have consortium come together and develop an assessment framework or application process.

00:10:14: And Jan said let's go!

00:10:18: I worked with the Canadian organisation and Eurordis was their lead in terms of the contract.

00:10:24: And we put an application, we won it!

00:10:27: So this space is a version or space for collaboration.

00:10:32: healthcare You had patient group leading by defining what level of expertise needed What an ERN looked like.

00:10:42: That really set up presidents where all clinicians look to your orders and what we were doing.

00:10:48: And saying, What do we do here?

00:10:50: Of course the work which we did in joint action highlighted that actually with rare diseases you know there's a scarcity of cases but there is a scarcity experts.

00:11:02: so people living on the rare condition are experts by experience.

00:11:06: they should be involved.

00:11:10: So by us leading this project, setting up the ERNs we were able to put at the heart of these applications patient clinician partnership which never had happened before and The blueprints.

00:11:21: They application forms.

00:11:23: some of their coordinators have said to me We didn't know what a network did But by completing the application that formulated how our understanding Of what the networks should achieve And one other Network's which is ERN Gentaurus.

00:11:38: you know, they had come forward and it was an open call whilst we expected a skin network or metabolic network.

00:11:47: There wasn't one model which put in the call for applications And the genetics community came together and pulled together on application of genetic tumor risk syndromes Which wasn't expected.

00:11:59: So I ended up with twenty four applications going to the board member's days when i think they expected twelve or fourteen experience with working on and setting up the UK NF-I and F-II services, I understood the complexity of these conditions.

00:12:17: And so Urodis gave voice in the application process and called for all member states to see.

00:12:23: this is a landmark moment in history And this is a decision bigger than each of them individually.

00:12:30: There wasn't one right approach, and whether it was big network or small-network, can that work focusing on specialties?

00:12:38: Or one focused on tumours... We called for all twenty four networks to be approved and they were!

00:12:44: I mean i think Twenty Four is the perfect number.

00:12:47: we have brilliant system globally.

00:12:50: everyone looks at what the ERNs are doing in its innovation.

00:12:55: We're leading the world in this space, and it's great.

00:13:01: Fantastic!

00:13:01: And they have done so much so far using their motto Share Care & Cure to develop clinical guidelines for example...

00:13:13: The magic I think which doesn't get seen about ERNs is when you get clinicians for a condition like neurofibromatosis type two coming together talking sharing experiences of care.

00:13:26: Each of those clinicians, whilst they're brilliant individually together.

00:13:30: They know more and when they walk away their understanding of the condition in what to do has been enhanced.

00:13:38: so The care which they give locally then is informed by the collective knowledge Of the network.

00:13:44: And I think that's really levelling up and i think it's magic.

00:13:47: It's absolutely magic!I get goosebumps whenever I see the clinicians talking To each other...they are not that bothered but I am.

00:13:54: is what's at the heart of networks, this knowledge generation?

00:14:00: Absolutely.

00:14:01: And I think it's clear by now that you have a talent in setting up network and another network that your critically involved in setting-up is the mental health and mental well being partnership network.

00:14:14: just recently in twenty three can you talk about this initiative?

00:14:18: What are their aims and who was involved?

00:14:21: so working with patient communities, the EPACs.

00:14:24: The European Patient Advocacy Group's over the last eight nine years we developed patient journeys which mapped their needs of the community for individual conditions and I think that what worked on over fifty of them as a team maybe even sixty And every time we worked on them the message came up about mental health well-being not just the individuals, but their whole family.

00:14:53: But then when you look at our advocacy there was no advocacy around.

00:14:58: how do we live well with a rare condition?

00:15:00: How do we provide emotional support to families?

00:15:05: and it really struck me that that was a massive gap.

00:15:10: I conceptualise rare conditions in the impact he has on mental health and wellbeing.

00:15:16: one of two ways We're living.

00:15:21: You're either firefighting the medical complexities of a condition, looking for research to push for treatments.

00:15:29: Trying to find someone who knows get a diagnosis getting access to treatment which is available or we are alone and it's when were alone that emotional impact on journey hits home And no one should feel isolated.

00:15:44: living with rare conditions and that's the power of the patient community.

00:15:48: being connected into a community, you all of a sudden start to break down social isolation.

00:15:53: But our advocacy since your audit was set up focused on those medical complexities – diagnoses research access to treatments over recent years moving more around holistic needs and integrated care But that whole dimension about the psychological impact it has on families and how we can counteract those risk factors, putting protection factors to people going through them was something which is missing.

00:16:24: So when the European Commission highlighted mental health as a priority for them or public health priorities coming out of COVID... We said this is big issue in our community.

00:16:41: Yes, absolutely.

00:16:42: So it became a priority and just by doing that I think It made people feel in the community That actually i'm not alone... ...I can say when things are difficult.

00:16:53: And the network The mental health Network which we've set up is really to give space for People In the communities To step forward who have faced these challenges which are very natural responses to very extraordinary situations.

00:17:08: You know, when you get to giving a diagnosis your whole world changes.

00:17:11: it will be unnatural not to be affected by that.

00:17:14: so the network gives us space for our community step forward and connect... ...to be seen To support each other And to know that your mental health matters.

00:17:26: I think if people know that And that they're not alone.

00:17:30: We can start to improve their lives and all our lives, we all benefit from it.

00:17:36: so... ...we set up the network and have been doing a number of activities under them for the past couple years.. ..and we've done a communication campaign about putting a phase into rare conditions People explaining real-world experiences as personal testimony.

00:17:52: So you really see how these are going through challenging pathway for diagnoses and treatment.

00:18:00: Rare diseases is associated with that.

00:18:03: we get to see how that impacts on people's lives, I did a workshop in Oslo this year.

00:18:12: it was absolutely brilliant being there space where people felt safe talking about the importance of looking after ourselves.

00:18:22: so these things are important.

00:18:26: While the over seven thousand rare diseases are so different from each other, there's so much overlap when it comes to dealing with uncertainty.

00:18:34: living with a rare disease that doesn't have a cure yet.

00:18:38: Feeling isolated feeling like an outcast of society dealing with discrimination.

00:18:44: So they're so much common topics that affect mental health and rare diseases.

00:18:51: I think our most thing that we, mental health as a term becomes a stigmatising term where people then don't want to... they don't associate that stem.

00:19:01: And actually if we could refocus it and say how do we look after the quality of life for people living with rare conditions?

00:19:09: To live well in the rare condition what does that looks like?

00:19:12: That removes stigma associated with it.

00:19:15: And that workshop in Stockholm was brilliant.

00:19:19: We had over a hundred people there.

00:19:21: I've never met one patient community who said this wasn't important to them and we need to give space In our communities, talk about it.

00:19:30: This simple things can do To improve quality of life now Like access to trusted information Being connected into the patient community Not everyone is by someone from the tubular sclerosis community, when they first connected with a conference on tubular Sclerosis.

00:19:52: They said it was game changer.

00:19:53: all of us and then we're seeing their experiences were legitimized didn't have to explain.

00:20:00: people understood.

00:20:02: there's people further down the pathway or journeys that where who they could talk too helped having your patient group.

00:20:13: We talk about psychosocial care, which is basically to make sure that we don't just address the physical needs but think of resources.

00:20:22: families are able cope with difficult treatment pathways and stuff like that.

00:20:27: But the foundation of psychosocia I think it's a patient community Rated.

00:20:35: it's so not visible.

00:20:37: how important if It's one thing from this podcast.

00:20:40: If you are in a patient community Knowing that your community exists Know, that is again changer.

00:20:48: That enables people to be connected.

00:20:50: They don't need say how they feel there?

00:20:53: In the space where they feel safe and they Understand these other people who understand them on what's going on in their lives.

00:21:01: I think that Is something we need hold more in more value and not get lost too much in pushing research.

00:21:10: And other things.

00:21:10: just by being an existence is a game changer, and it's so lifeline for lots of people in your community.

00:21:18: Absolutely you mentioned the interdisciplinary multidisciplinary care that are so important rare diseases and four.

00:21:26: For some time it was very much focused on the medical aspects, but now I think more and more healthcare professionals also doctors come to realisation that psychosocial care is equally important.

00:21:39: Something that also patient advocates have been talking about for many years And i think people start listening now.

00:21:47: So let's just break down what psychosocia care That's not having a psychologist in the team and handing over to them anyone who has any difficulties.

00:21:57: Psychosocial care is basically ensuring that all medical care and treatment is psychologically informed, that we enhance any interaction with someone living with NF-one or NF-two whether it's a nurse, surgeon, geneticist... The language they use that their approach is enhanced to be a bit more thinking about the individuals as people, making sure they're there and checking if you are okay.

00:22:32: Not just giving them complicated languages or language where it's bias in saying what can't be done instead of what can be done.

00:22:40: How living with condition impacts quality life.

00:22:45: but our beliefs our perceptions, how we perceive the condition adds another layer of complexity and can colour our understanding of the condition.

00:22:56: And it can impact quality-of life.

00:22:58: so our beliefs and expectations around a condition are shaped by how other people talk to us about that condition.

00:23:06: So how your doctor talks to you or about NF one?

00:23:09: what's possible?

00:23:10: What is not possible ?

00:23:11: Can empower to see the condition in a way that isn't one where you are anxious or there's a level of uncertainty which will always be with rare conditions.

00:23:25: It is not handing over it to family at diagnosis, that uncertainty and say go on with this.

00:23:31: as a clinician should hold responsibility for that uncertainty provide support those families saying we don't know all answers But over the next six months, these are things which we can do.

00:23:43: Which gives structure and certainty in an uncertain environment.

00:23:47: that's psychologically informed care And I don't think it costs a lot.

00:23:53: We start to change that.

00:23:54: so overtime.

00:23:55: this is starting to take root.

00:23:58: People understanding there needs to modify how medical care is given

00:24:05: Absolutely, and anxiety is a very common issue in rare diseases as well.

00:24:10: And this can also impact their health care if they are just too afraid to go see the doctor even though he might experience symptoms.

00:24:20: This could be life-threatening.

00:24:22: Anxiety is clearly associated with uncertainty.

00:24:27: So you manage the uncertainty of condition has by getting access time, the information which is trusted.

00:24:36: You don't look on the internet for stuff you know that it's managed in the right way.

00:24:40: then you can reduce to a level of anxiety around living with that condition but its having an information in a trusted way at the right time.

00:24:48: and one other thing about as patient communities are people who live within rare conditions because uncertainty creates a thirst for knowledge Like yourself, you know.

00:25:02: You do more research should do more reading but by doing that you create other possibilities in your head.

00:25:09: So it's a bit of a double-edged sword and needs to be managed.

00:25:12: so That's why having access to curated trusted information at the right time is absolutely key.

00:25:17: You don't just get all at once.

00:25:19: I sometimes feel that the multi disciplinary teams look after rare disease.

00:25:23: patients need counter all the negative effects that rare disease patients experience in society.

00:25:31: They often deal with discrimination, they feel like outcasts and when...they should feel compassion an empathy from our society And feel like valuable devaluable parts of society that there are.

00:25:48: Like you said people can learn so much form rare diseases patients.

00:25:52: There're often role models when it comes to resiliency and dealing with huge challenges that most people couldn't even imagine.

00:26:02: So, the people living in rare conditions are one of the most resilient people I've ever met!

00:26:09: A little antidote...I travel a lot and got to Amsterdam late on Saturday night on my train.

00:26:15: Of course i leave my bag with my wallet or two passports but don't have many.

00:26:21: And then I got to hotel and realised It's gone, but you know my life.

00:26:25: and I went in meltdown A really nice lady from the chondroplasia community.

00:26:32: She came to my rescue a knight in shining armor And she had my back.

00:26:37: She got my backpack.

00:26:39: i mean it was incredible!

00:26:40: It was like...she was a magician of some type In a crisis.

00:26:44: people in rare disease communities have become Really good at dealing with that survival mode.

00:26:50: But what's really important is that survival mode doesn't become a reality, a normality.

00:26:57: We need to be able to go back to living life and so support is needed definitely from multidisciplinary teams in that respect To always check the family's resources.

00:27:10: you know how they best able to cope with The current treatment plan which it going on or what's going on in their lives.

00:27:18: So We definitely can do more there to put in some protection factors for families and reduce some of the pressures so people can step out of survival mode, start living again.

00:27:32: And what would be like one policy change that will have a big impact on mental well-being in the rare disease community?

00:27:43: That's a big question... If you were affected by cancer and you go through the health care service, let's say in Austria.

00:27:53: Psychosocial Care is an integrated part of your medical care.

00:27:58: there's a brilliant guideline actually on that in Austria.

00:28:02: if you live with a rare condition psychosocial care isn't there.

00:28:06: it's not an integrated path but they need to.

00:28:09: people are the same.

00:28:11: so it would be that this greater recognition of looking at the needs people, the recognition mental health and services physical health services become more psychological informed.

00:28:25: And that becomes part of their day-to-day business.

00:28:31: That's a great wish did I can totally support.

00:28:35: You supported because you commissioned new set up in Austria?

00:28:41: This is why always get inspired by what NF kinder does.

00:28:45: you've set that service up.

00:28:47: You have a clinical service, an expert centre for NF which has the psychosocial support system there.

00:28:56: if you can do it class surely is too big to ask for health services?

00:29:07: I'm sure that health services can learn a lot from patient organizations, because what we could do with relatively small amount of money is astonishing.

00:29:17: But yeah let's keep connected to the Health Services and show them our best practices!

00:29:23: That way they draw lots inspiration from it.

00:29:27: Matt you are now living in Cologne.

00:29:29: What was your biggest cultural shock?

00:29:35: or the biggest cultural shock would be carnival in Cologne.

00:29:39: That's very clear, but in terms of their health service you know I sort of been experiencing different health services around Europe and i think that the elective care services are really great.

00:29:54: You have a good level of care.

00:29:56: is short time to see someone just because it's elective It doesn't mean people aren't you know, it's not urgent as it were or severe and that pretty really good in Germany.

00:30:14: Emergency care struggles in Germany whereas actually the UK is on the opposite way around.

00:30:19: Elective Care is always fun... The income hospitals have goes on managing trauma rotors.

00:30:28: so there isn't one perfect health system but there's benefits to all of them and we need to create greater learning across those different systems.

00:30:41: Also another thing that the URNs probably can help a lot with?

00:30:44: Yeah, yeah absolutely I've you know in the UK because also got my UK passport.

00:30:52: i suppose The UK is really innovative at coming up with new specialties or professions so things called gypsies and pixies, so they're GPs with special interests or pharmacists with special interest.

00:31:07: So there's a real diversification of roles to meet the needs.

00:31:11: because of the financial situation with health service I see less opportunities for diversity around that in other countries And we definitely can learn between each other In terms of health systems.

00:31:31: Pleasure to talk with you.

00:31:33: I think we covered all the questions that i had and thank you for your insights, it was truly inspiring!

00:31:41: So this is our first episode of the NF Podcast.

00:31:45: Hope y'all enjoyed as much as i did while producing it.

00:31:48: If u have any question or feedback from

00:31:52: me

00:31:52: feel free to reach out to us.

00:31:54: You can find contact information in show notes.

00:31:58: Thank U for listening And until next

00:32:00: time.

00:32:00: Thank you for being with us Matt.

00:32:02: Thanks Klaus.