Guest: Lesley Brydon
Presenter: Henry Acosta
Guest Bio: Lesley is Chief Executive Officer of Painaustralia, a national not for profit body formed in 2011 to work with governments, funders, health care professionals and consumers to facilitate implementation of the National Pain Strategy. Lesley played a leadership role in the development of Australia’s National Pain Strategy – a world’s first – which was ratified by over 150 health care and consumer organisations at the National Pain Summit at Parliament House Canberra in 2010. Previously Lesley was Executive Director of the Advertising Federation of Australia and had an extensive career in corporate communications in both private sector and government roles.
Segment overview: Lesley Brydon talks about chronic pain as being dealt with by Painaustralia, a national not-for-profit body established to improve the treatment and management of pain in Australia. One in five Australians, including adolescents and children, live with chronic pain. This prevalence rises to one in three of the older (over 65) age group. With the increasing number of affected patients, chronic pain still remains one of the least understood and poorly resourced areas of healthcare.
Health Professional Radio – Better Access to Pain Management Services
Henry Acosta: Welcome to Health Professional Radio, I’m Henry Acosta the host for this episode. Today we have Lesley Brydon, CEO of Pain Australia. Pain Australia is a not-for-profit organization established to improve the treatment and management of pain in Australia. They were established back in early 2011 with the goals of helping people in pain and making it a national health priority, spread knowledge and awareness about pain and train professionals to help people deal with pain and also improve quality and research all around this subject matter. Today we’re here to talk about Pain Australia and what’s coming next for them. Hi Lesley and a pleasure to have you on studio.
Lesley Brydon: Good morning Henry. Thank you, it’s a pleasure to be here.
H: Can you tell us a little bit more about yourself and what you do?
L: Yes, I do what I do because I am someone who lives with chronic pain, indeed I trained originally as a pharmacist and subsequently studied journalism and have worked in healthcare communications for a large part of my life. But at the age of 65, I had developed very severe arthritis and at that time I was running the Advertising Federation of the Australia and I was forced to retire really because of the pain and I subsequently meet Professor Michael Cousins, who was one of the world’s leading pain experts and I learned that there was a great deal of new knowledge now about pain, in particular chronic pain and the complexity of it, the role of the mind, the role of the nervous system and how chronic pain does become in fact a disease in it own right. And so since that time, back in 2008, I have worked with Professor Cousins and around 160 other health care and developed what became the World’s First National Pain Strategy and held the World’s First National Pain Summit at Parliament House since 2010. And I think that’s been a real watershed in terms of understanding and improving treatment of pain. Professor Cousins was subsequently invited to lead an International Pain Summit which was held in Montreal in 2010 where we got an agreement on a set of principles and guidelines for establishing pain programs in any country anywhere and also agreement on a human rights speculation that access to pain management should be a fundamental to human right, it’s known as the Declaration of Montreal and it is now supported by the World Medical Association and the Human Rights Organizations worldwide.
H: And what inspired you to becoming one of leaders in this industry?
L: Well I think I’ve got the tri-factor Henry, I mean I’ve got the chronic pain, I’m trained as a pharmacist, so in fact understand the medical environment and health care principles generally and I’ve worked in communications and advocacy. So bringing all of those skills or experiences together I think it’s enabled me to do the work I do, I really feel that at this stage of my life, I’m about 75 now and I really feel that perhaps for the first time I’m doing something that is of real value and is going to leave a legacy in terms of improving healthcare for people like myself but I should say people much, much with this, I mean really see people every day who live with some the most desperate chronic pain and it really is a very neglected area of healthcare, we need far more research, we need much better education and training of health care professionals to help people with chronic pain and we need a much higher level of health literacy and understanding amongst consumers so that they can actually self-manage their own condition because like all chronic conditions, chronic pain really does leave the patient themselves to take control and to manage the condition with the support that they get from well-trained medical professionals, medical and healthcare professionals.
H: And with not really being well known as a topic of interest in the medical industry, even though it’s one of the early symptoms of chronic diseases, why do you think that’s the case about it?
L: Well I think that one of the real problems when we started this process back in 2010 as the National Pain Strategy, pain was nowhere in health care policy. It was not recognized and chronic pain was not recognized as a condition in its own right, it is always seen and even dismissed as simply a symptom of some other problem of arthritis, of cancer or multiple sclerosis and some other disease. And it was never really taken seriously by the medical profession and I think much of that has changed now, I think that some the work that has been done by researchers to understand the complexity of pain. The fact that it is not just a physical condition but chronic pain particularly is influenced by psychological and environmental or social factors, I mean be lifestyle factors are hugely important but also somebody’s personal environment whether it’s at work or whether it’s a time or whether it’s the community they live in. People’s mental state and outlook will influence the experience of pain, as does the meaning of the pain, perhaps the causes of the pain, the original trauma and then we see that particularly say in young soldiers coming back with horrific injuries and opposed with post-traumatic stress is a major factor. But almost in every case, chronic pain is a factor alongside the post-traumatic stress and the 2 conditions live side by side when this person experience when the pain kicks in and when the pain is there the trauma or stress is relived. So that people in everyday life experience that too, it’s the pain has a very nasty and horrific meaning then often it will be worse. That time, learning to understand that, people with chronic pain can actually do a great deal with themselves, they find that the one consumer groups and having a basic education about the science of pain, what is actually going on in their bodies can make a real difference to help people experience pain and how they manage it, often through things like meditation and relaxation and exercise and therapies that they can activate themselves without taking pills. I mean the last thing people need to do with chronic pain is to be taking medication, we don’t have any decent medication for chronic pain, let’s face it. I mean opioids, the safety profile of opioids will turn out basically except for very extreme cases where they can be helpful to people, opioids are not helpful. We do need better medication there’s no doubt about that, so we need better research but we also need to embrace the alternative therapies.
H: What are the other suggested alternative therapies that you can suggest? And also what are the best ways we can manage pain?
L: Right, I mentioned some of them just then, there’s a self-management program, these programs by the way are being taught in pain programs. Originally they started in public hospitals but with very limited and had long waiting times. We are now developing pain programs in primary care where people can go in a group, a small group and learn techniques like meditation that can embrace particular desensitization techniques, techniques like pacing so that you don’t actually overdoing physical activity or any other activity that might aggravate your pain. Exercise, it not just any exercise, I mean exercises need to be tailored to the individual and a good well-trained physiotherapist or occupational therapist or other physical therapist can help with that and we do know for example that actives, people who are involved in active exercise strategies and meditation do much better in managing their pain than people who rely on passive strategies like massage for example. I mean massage can be extremely helpful if you got various forms of pain particularly musculoskeletal issues. But on their own, they’re not going to help anybody, you really do have to take control of your pain. I mean things like hydrotherapy are enormously helpful to people with chronic pain conditions. Not just arthritis but also autoimmune diseases, it’s also it’s mystery diseases now that seemed to cause chronic pain and complex regional pains syndrome. And hydrotherapy and self-management programs can be very helpful to that. But I have to say Henry, the biggest problem about this is the complete lack of support of the Medicare system and the private health system for alternative therapies. The Medicare system perpetuates in acute care model, it simply does not provide adequate support for people who want to self-manage their pain, who want to learn more and want to take responsibility. I mean I can tell you that personally my out of pocket healthcare expenses in the last financial year was almost $20,000 and a lot of that, I mean that’s even though I do a lot myself but I still go to a physio, I had regular exercises, I did have to have major surgery, I’ve had to have 5 joint replacements so far and possibly others to come if there’s anything else to come. But the reality is that our system does not support a preventative approach and more of these support people in their active self-management programs and one of Pain Australia’s major goals is to change that.
H: What’s the biggest misconception that you usually face around your organization?
L: Well I think, lack of awareness of pain generally. I think the stigma associated with pain. I mean few years ago, it is much worse I must say. I mean it was a bit like depression, I mean 40 years ago, people would quite dismissive of people with depression. We now realized that it’s actually a biological condition or a serious medical condition that needs proper help and so too is chronic pain. So the ongoing stigma, the frequent discrimination against patients by their medical professionals and by people who, I understand that it’s very frustrating for GPs and other health professionals that they can’t actually help people with chronic pain. But that’s not to say it should be dismissed and it’s not to say that it’s all in their heads and it’s not to say that they’re … it on. If they they’re in pain, people are in pain and they do need appropriate help but it’s not necessarily medical help, it might be psychological support. So one of my great challenges I guess is chronic pain is real and that it destroys people’s lives, it must be taken seriously and that there are ways now to learn about it, we have excellent online education and training programs from medical professionals. We’ve got wonderful resources to consumers available on our website, Pain Australia’s website is we don’t only have our own resources there but we are a gateway to a whole host of other really good videos and fact sheets and reading materials and advice that people can actually benefit from. The biggest frustration is making people aware of it, I mean Pain Australia is a completely unfunded body, we get absolutely no support whatsoever from government. I have to do all the fundraising and frankly it’s a battle and it shouldn’t be because chronic pain is the biggest cause, the biggest cause, biggest burden of disease worldwide. Back pain and arthritis are the primary causes for people of working age to drop out at the work force and I’m an example of that and therefore it doesn’t make any sense whatsoever that it continues to be ignored and underfunded and in the way that it is.
H: And what’s next for Pain Australia as an organization?
L: Yes, well I think next year holds some promise Henry, we have an opportunity now, we’ve been advocating for pain management to be considered within the Medicare, the current Medicare review and the government now has agreed, the MBS Task Force will review pain management in its own right. Not just as part of something else, in its own right and it will obviously look at current Medicare items which are largely related to procedures for chronic pain which were only necessary for people in extreme circumstances but we have an undertaking that they will actually look at your item numbers to support a chronic disease care plan with extended GP and allied health consultations and also potentially a pain program which will enable people to learn about their pain and learn basic self-management techniques. If we can do that, I reckon I can retire Henry. Let’s face it, there’s still be a lot to do but that will be a major I think achievement if we can do that this year.
H: And for our last question, for anyone who wants to support Pain Australia, how can they reach you and maybe talk to your organization?
L: painaustralia.org.au is our website. So if they come to the website, they can access all of our resources and they can actually make a donation or if they wish, I can’t give you our landline I’m afraid to call because we’re just about to move offices. We rely on the generosity of pro bono service providers so we have to move from one office to another. But the best, they go to the website or they can send me an e-mail, [email protected]
H: Awesome. Well, that’s all for our questions for today and thank you for being on the show Lesley, it was a pleasure.
L: Thank you very much Henry.
H: And that was Lesley Brydon, CEO of Pain Australia. Pain Australia is a non-for-profit body established to improve the treatment and management of pain in Australia. Me and Lesley just finished talking about what’s the next for Pain Australia and hope to spread awareness and some knowledge on the current issue. I’m Henry Acosta and you’ve been listening to Health Professional Radio. You can visit us on www.healthprofessionalradio.com.au or on hpr.fm, you can also find us Soundcloud and iTunes.