MDIA3002:

Multiplatform Journalism ASSESSMENT TASKS SEMESTER 1, 2013

Assessment 2: MAJOR ASSIGNMENT: Original Production TARGET AUDIENCE ANALYSIS: Full Name: SID: Topic: News Organisation and Section written for: One of the assessment criteria for this task asks you to identify the news organisation and target audience that your story has been written/produced for. Use the space below to explain the angle you have chosen for your story and how this aligns with the ideals/beliefs/values both of that organisation and its target audience. Also state WHAT social media aspects you would add into this story package that best fit with the promotion and wider distribution of the story for this particular audience. Emily Rebecca King Z3375720 Motor Neurone Disease The Global Mail, Drug Money

I chose The Global Mail for two reasons: one, I have been working as an intern there since February; from this I have not only picked up a knowledge of their values and styles, but I have been working closely with the journalists responsible for their current feature called Drug Money. A story that has been shaped to this particular feature is given added newsworthiness alongside the values of timeliness, consonance, proximity, novelty, impact, personalisation and negativity (Bednarek and Caple 2012). The Global Mail defines their audience as independent minds and its known that their readers are, in a sense, AB type readers most have a degree and hold professional or managerial positions, they are affluent and they are young, estimated to be between 25-35 years of age. It is for these reasons that I chose an angle that focused on the money and funding aspect of this disease, which capitalises on the novelty and timeliness of the Million Metres for MND bike ride. While the impact of MND is arguably small, the negativity arises from the fact that any ones life is not as valued as much by state governments, shown primarily through the personalisation of Syd Orchard and his family in my copy. This fits in with the Global Mails preference for what could be called championing the underdog. Since The Global Mail is a web-based, I feel I am justified in comparing NSW to another state, for although their office is Sydney based, The Global Mails readers are, by their choice in publication, concerned with matters that extend across Australia and are not hyper-localised. Much thought was put into the visual aspects of this story. The Global Mail is passionate for data- visualisation, with their drug Money datavis recently announced as a finalist in the 2013 Global Editors Network Data Journalism Award. Although this was not necessarily part of the assessment criteria, for this story to be fit for publication I have chosen to include an info-graphic so as to fit in with the style and values of the Global Mail. Kolodzy (2013) stressed that reporters who want to use every story telling device available need to think of graphics as part of their journalistic toolbox (p97). However, perhaps more importantly, my image gallery features images that have both aesthetic and news value. One image I specifically composed to imitate Mike Bowers style for the rest of the Drug Money feature, that being of pills backlit on a light-box. Some images overlapped the story, but showed what would

MDIA3002 S1 2013

 MDIA3002: Multiplatform Journalism ASSESSMENT TASKS SEMESTER 1, 2013 ______________________________________________________________________________

have been poorly perceived in text, for example, the tandem bicycle can really only be explained in a photo.

In order to promote and distribute this story, apart from the typical tweets and Facebook posts which link back to the story, I believe asking relevant stakeholders, such as MND and Me to feature this story on their Facebook page and website would aid in giving this story to people who would perhaps be most interested. A link to the documentary on Scott Sullivan and Dr Ian Davies by Legacy films could also be linked to in the story.

References: Bednarek, M and Caple, H 2012, News Discourse, Continuum, London. Chapter Three: News Values, pp.39-83 Kolodzy, J 2013, Practising Convergence Journalism: An Introduction to Cross-Media Storytelling, Routledge, London/New York. CHAPTER SEVEN: Capturing context and tone: Using words, pictures and sound, pp.95-115

MDIA3002 S1 2013

 HEAD: Paying With Lives: Motor Neurone Disease By Emily King INTRO: One in 15,000 Australians is living with Motor Neurone Disease, a disease that leaves sufferers unable to walk, talk or breathe. But government funding grants sufferers just $133 a year. EMILY KING investigates. AT 1:37 PM on May 18, two men on a unique tandem bicycle reach the finish line of their 16 day, million metre ride from Brisbane, surrounded by a convoy of bicycles, a police escort and hundreds of supporters. One peddles with his feet and the other with his hands. This is what a young mother, walking along the seafront of Manly one bright autumn day, finds as a crowd blocks her path. She, like so many Australians, has never heard of Motor Neurone Disease (MND) before. The sight is enough to convince the woman to donate some of her spare change. She skips her usual afternoon coffee, confident in the knowledge that she has helped the cause of MND and Me. What she doesn't know is that for some with MND in Australia, the government funding only supplies as little as $133 per person - this young mother could match that in less than a year if she gave up every Saturday coffee. This is the gap that has left state and federal MND associations relying on fundraising such as the Million Metres for MND and Me bike ride. One of the riders, Dr Ian Davies, 35, is a dead man walking with a brace. The haematology registrar from the Peter MacCallum Institute in Melbourne diagnosed himself with MND almost two years ago. He knows from treating MND patients that the cost of this disease on people and their families is thousands of dollars per patient and some 600 lives nationwide a year. It can be quite confronting when youre at the early stages and you meet someone at the later stage because they cant talk and they slur their words, they could be dribbling and theyre paralysed, says his co-rider, colleague and friend Scott Sullivan. At his speech at Manly, Scotts words are already spoken with a slight lisp. So that can be confronting knowing that its going to be you. A Price Waterhouse Cooper report in late 2011 found that Australia ranked last out of 27 developed countries for quality of life for people with disabilities, sparking passions for the National Disability Insurance Scheme (NDIS) to help people such as those with MND. The Global Mail has talked with the families of those who have lived and died with MND to see how funding and support is being given. We found story after story of people who are angry and helpless when facing what is a crippling disease. Youre actually thrown out into a world that you know nothing about, says Cherie Orchard, a mother-of- three whose husband Syd died late last year from MND. You dont know anything about palliative care, you dont know anything about anything, really, and because its such a quirky disease, the symptoms are all different. Her daughter, Emily Maher, 36, agrees. I will badmouth Motor Neurone Queensland till the day I die, cause they did nothing, Emily says. MND QLD is a not-for profit organisation that handles some $40,000 in government funding and almost 10 times as much in donations.

This money goes towards providing care, information and advocacy and an equipment library to spare patients from forking out money for equipment. Wheelchairs, as an example, can cost anywhere from $900 to $13,000 but are only used for a few months. MND NSW is a bit better off, receiving $485,000 this past year, covering 484 members from NSW, ACT, NT and even the Gold Coast. NSW has an equipment library of 1700 pieces estimated to be worth $1.5 million. Some 281 of their members have 1249 pieces on loan. When asked, representative Anna Thompson from MND QLD refused to give a number to her organisations library. Families and friends of those with MND are footing the bill in all states through donations. Graham Opie admits that the services available in NSW and Victoria are significantly better than other states. A MND QLD representative estimated that Queensland services are about a decade behind. Not only do they receive about 10% of the government funding, but they also only receive about 10% of the amount in donations. In the last year, people in NSW have donated over $1.5 million to MND NSW, and MND Research Australia had about $2 million. I think its our good service that then means people donate money, says Gina Svolos, Family Support Manager at MND NSW for the past six years. Three weeks before Syds death, his three daughters held a fundraising dinner for 160 at the local golf club. We raised $10,000 which was really good, says Emily Maher, and Scott Sullivan came out, which he shouldnt have, he shouldnt have driven. Scott Sullivan, 40, explained how his diagnosis in October 2010 led to him starting the MND and Me foundation and riding with Dr Davies. When I researched MND QLD, the services were really in a very sorry state, so there was an opportunity there to actually do something tangible. He is incredible, that man, says Emily Maher. He needs a medal for that theyre doing. Scott Sullivan and Dr Davies had a goal of $250,000 in less than a month for their Million Metres for MND bike ride. MND Queensland only gets twice as much in a year. MND has the greatest ability to scare people into doing something, says Dr Davies. Its a hideous disease once you actually find out about it, says Graham Opie, CEO of Motor Neurone Disease New South Wales (MND NSW). Theres no remission, theres no chemotherapy or radio therapy, theres nothing you can do, you cant do an operation. You will die from it. Youll probably die between three and five years. Dr Barrie Morley, a retired neurologist who worked at Monash Medical Centre for over 25 years ,was not only was on the board for the Brain Foundation but witnessed his own brother-in-law David die from MND. Dr Morley explains how the disease first stops motor neurones, the nerve cells that control muscles, from communicating with the brain stem and spine. People with MND lose suffer twitching, spasms and progressively lose the ability to control their muscles. One day they can't walk or type. Then they lose the ability to talk. Eventually they die when their lungs no longer work.

Once you lose the ability to move your arms and speak, your quality of life really goes downhill physically, says Scott Sullivan, founder of MND and Me. Mentally, youre 100% active, but not able to communicate with fellow people which is frustrating. I think people do give up once they lose their voice. One of the challenges for organisations for people with MND is that it is so unknown. This means that both families are faced with a maze of services and organisations must advocate on their behalf. Youve only got this short time with the person that you love, and you spend all that time, and Im not exaggerating, you spend all that time on the phone, looking for help, says Cherie Orchard. We rely on the system, the Department of Health and private health care, to do what theyre supposed to be doing, explains Graham Opie. Unlike other organisations, such as those for better-known diseases such as cancer and heart health, MND associations try to avoid overlapping their services with those provided by others. In NSW, the solution to this is eight regional advisors who travel the state educating health practitioners, patients and families and providing support. One of these regional advisors has extended their service to the Gold Coast, because in Queensland, there are none. Theres no booklet, theres no one doctor who will tell you what to do, says Emily Maher. A GPs not trained in MND, so they try to pass you off to the neurologist, but hes a specialist, so he doesnt actually want to see you once a week. One of Scott Sullivans major goals is to provide the 300 people in MND in his state with these regional advisors, or what he calls liaison officers. What we need is five or six people who are trained and educated and have the knowledge and experience to work closely with the families, sit them down and say, look if you need a hospital bed these are the avenues you can go through, here are the forms, Ill fill them out for you. One of the challenging aspects of the cause, explains Scott is that its not really a united front. For example breast cancer theres such a positive vibe, all these survivors, all these great stories, theres hope. Whereas with MND, you dont have that. I think with MND, because not every case is the same, people cant relate to each other, says Cherie Orchard. Scott Sullivan told The Global Mail how one of his neighbours was diagnosed at the same time as himself. He didnt tell a soul, not even his family, says Scott. In the end, MND sufferers are all united by one thing. MND has no cure. Janet Nash from Research at MND Australia, says that last year, $2million, all from donations were given as research grants. Grant applications must be reviewed by a panel of experts as per the principles of the Australian Tax Office for approved research institutes. We always have many many more grant applications than we are able to fund, says Nash. The first grant was awarded I think in 1989, of about $25,000 and last year we awarded $2 million in grants. It's known now that we've got good money for research, being able to persuade people to skew their research to MND rather than Alzheimers disease or whatever else that might have been chosen to work on. The Brain Institute of Queensland announced on May 26 that the first research centre devoted to MND in Australia has been set up on the grounds of Macquarie University. Already they have found exciting

evidence from zebra fish, which are able to regrow new, healthy motor neurones. Yet those who know MND are cautious. Both Graham Opie, Janet Nash and Scott Sullivan admit that treatment is at best a decade away. For Scott, and other 1,500 Australians living with MND today, it will be too late. Theyre never going to get any better. Its a terminal disease, says Cherie. Unable to wait for a cure, services for MND patients focus on quality of life and palliative care. I still dont really know what palliative means, says Cherie. I know it means dying, but I dont know what stage youre actually classed as palliative. To me, and MND patient is palliative from the time theyre diagnosed because theyre dying all the way through. A major role of ours is to keep people at home where they want to be, not dying in a hospital or in a palliative care service, actually having al the support they can to stay at home, says Graham Opie. In fact the vast majority do that and we help facilitate that. New hope for those with MND has arrived in the form of the NDIS, which is hoped to put more money into the hands of those with disabilities, rather than organisations having to rely on fundraising and donations. When asked about the NDIS, the CEO of MND NSW leans forward, eyes bright. Its fantastic, I think we were one of the first 5 to sign on, Opie says. Every year, for the last four years weve written to all our members asking them to write to their local parliamentarian to promote the NDIS because the money being in the individuals hands, or the familys hands so they can determine whats best for them, we think is the best way to go. When asked about the NDIS, Scott Sullivan shifts back in his seat. Its a step in the right direction but bureaucracy will probably make it hard, he says. There will be forms, there will be processes, there will be waiting lines. So its a pool of money that will help but we need to make sure that pool of money goes to people who need and doesnt get chewed up in processes and staffing. Gina Svolos from MND NSW admits that the NDIS does have its flaws, including its eligibility criteria, which shuts out patients over 65. The highest rate of MND is for people in their 50s and 60s, meaning that many sufferers are classed as aged care patients. This only entitles them to 16 hours of care a week compared to almost double for those on high-care packages. Dying people make people nervous, explains Dr Davies. "It literally comes down to sheer money. So, you say the cancer word and people pour money into it. You say MND and unfortunately, because we dont live long enough, theres no incentive for drug companies or for the government to put enough money in because the burden that we ultimately have on the hospital system and hence the governments finances is very small." Everyone The Global Mail interview was concerned that the funding and services provided by the NDIS would not be given quickly enough to those with an aggressive form of the disease. Many have found themselves playing catch-up with symptoms until they are in hospital at the end of their days. I asked one of these nurses, I want to know how hes going to die. I want to know, I want to be prepared for how hes going to die', says Cherie Orchard. He was terrified he was actually going to choke to death, and they said, oh no no no no no, hell but they never actually came out and said this is how hes going to die. In that last week, dad started coughing, recalls Emily Maher, their daughter.

She mimics her fathers silent coughing, bent over as if retching. He had no strength left in his lungs. He was coughing, which was actually him choking and dying, and we didnt know. We thought he was just choking. Eventually most people asphyxiate, because their diaphragm cant the muscles just dont work, says Graham Opie. In the ward, every time Syds oxygen levels dropped, twenty different doctors would come in, and nurses, and wed be standing there, saying, hes DNR [do not resuscitate], hes a DNR, hes a DNR cause there was no sign up saying do not resuscitate, says Emily Maher. She describes the event as, so incompetent its not funny. They were all getting ready to resuscitate him. And were saying, no, no, hes not for resuscitation, youve got to stop and poor dad, whos blue, and choking and fully aware of whats going on Lyn, who prefers privacy over her husband Gregs death eight years ago, describes a similar event. He was unconscious but they say, you know, what do you want us to do? I dont know whether they were asking me to try and save him or why he hated his life. Thats something you dont think of. You dont think youve got to make a decision. Syd Orchard's family eventually decided to take him home. Hours after waiting for an ambulance, two of his daughters had the time to drive home, pick up their wheelchair van and drive back to pick him up before the ambulance even arrived. He died two days later. Scott Sullivan and Dr Davies hug at the finish line at Manly on May 18 this year. Scotts once muscular, footy-playing shoulders fold wasted and birdlike into the embrace. He then turns to the crowd and makes a speech. His voice quivers, and its unclear whether its from exhaustion, emotion or the progression of his disease. His three-year-old son Charlie happily waves a streamer, unaware that these may be some of the last words of his father he will ever hear. I was saying to one of my girls the other day, that I dont remember the day he said his last words, says Cherie of her husband.

Motor Neurone Disease (MND) stops motor neurones, the nerve cells that control muscles, from communicating with the brain stem and spine. People with MND lose suffer twitching, spasms and progressively lose the ability to control their muscles

THE Motor Neurone Disease Association of NSW is located on the grounds of Old Gladesville Hospital in Sydney

MND and Me was started by Scott Sullivan to help raise money for people with MND in Queensland, where the funding is a mere fifth of NSWs

A crowd of hundreds including a documentary film crew and the media meet the MND and Me bike ride at Manly on May 18, 2013

Dr Ian Davies thanks Scotts family, including his children Abbie, 7 and Charlie, 3 for letting me be your daddy. No family met Dr Davies at the finish line

Greenspeed in Melbourne designed a tandem bicycle that is one of a kind. It allows Scott Sullivan to peddle with his feet and Dr Davies to peddle with his hands

It can be quite confronting when youre at the early stages and you meet someone at the later stage, says Scott Sullivan

Scott Sullivan, 40, was once a avid sportsman with a muscular physique. Dr Ian Davies and Scott Sullivan hug at the finish line of the 16 day, million metre bike ride from Brisbane to Sydney

Dr Ian Davies has treated people with MND. He joined Scott Sullivan working for MND and Me after seeing Scott on the television two weeks after Dr Davies was diagnosed

. Donations and fundraising make up 80% of their funding to provide care and support for people with MND