The Upside of Down

by Susan Biggar

  We decide it’s time to become more proactive.

  Over the years we have generally gone for the ‘more is better’ approach to the kids’ care. More questions, more suggestions, more ideas, more sputum samples, more educational conferences, more physio. The questions, suggestions and ideas have probably made us aggravating to our healthcare team, not to mention time-consuming. Our binders stuffed full of queries and quirky ideas have at least helped us stay involved in the kids’ treatment decisions—essential for such a hands-on, everyday-demanding condition. However, as much as we respect our team in Melbourne and feel involved, it’s becoming clear that the ‘more is better’ participation on an individual level is not enough.

  Working alone, we might keep Aidan and Oliver healthy for longer but we’re never going to influence policies at our hospital—either the significant or the more trivial ones. For example, we know that coming regularly to CF clinic is critically important. But if the hospital parking lot is a disaster and finding a space requires a GPS, 13 laps of the parking lot and 28 minutes of grumbling, even the most committed families may be tempted to stay home and steam-clean the carpets on clinic day. Or what about appointment overload? Patients often have many appointments with specialists, and one-off tests: could these be lumped together on the same day? Not yet. Last year our family had seventeen extra visits to the hospital for these appointments. Couldn’t patients and families help the hospital to find a better way of doing things?

  It’s becoming obvious that I can squawk and grouse until I’m pink all over and nothing will change, apart from my becoming increasingly unpopular at the hospital and developing high blood-pressure. I find myself reflecting on Dr Cropp’s words to us in San Francisco so many years ago. ‘I have seen enormous changes in quality of care—most of them were pushed through by parents and adults with CF. Remember, you have the power to make a real difference.’

  But we can’t do it alone. One problem is that Darryl and I don’t know anyone else with CF. Because of concerns about cross-infection between patients, there’s very little contact between families. We are not a community; we’re people who look vaguely familiar and smile nervously at one another across the waiting room at two-monthly clinics. This is clearly our first obstacle because, jeez, this boat’s going nowhere if we don’t even know the names of the people rowing in front of and behind us.

  So we decide to start a monthly CF support group. I begin casually approaching other parents across the clinic, sidling up alongside them like a lonely heart in the local pub.

  ‘We’re starting a kind of support and advocacy group if you’d like to come along … We’ll probably discuss, uh whatever anyone wants to discuss and then maybe think about how we can improve things for people with CF … It’s just me and my husband right now …’ Darryl and I decide to make the get-together at a local cafe that we both like, thinking that if nobody else shows then at least we will have a pleasant little date night.

  But, thank goodness, they do show.

  Lisa, the conscientious occupational therapist, leans over her decaf latte describing her five-year-old son’s unhelpfully low-fat eating habits. ‘No matter what we try he seems to end up eating apples. We ordered a pile of fish and chips with friends on the weekend and all the other kids were tucking in but he wanted fruit!’ Despite the cajoling, her son isn’t interested in food and is just dangling on to the bottom of the growth chart as a result.

  Then the conversation turns to Sue. Her knowledge is far-reaching and her commitment to her 13-year-old son’s health is impressive. But the family’s clearly going through a tough patch. ‘We have tried everything this past year—every test, antibiotic, treatment change but his lung function just keeps on slipping.’ She pauses, running her fingers up and down the side of the berry smoothie in front of her. ‘It’s incredibly frustrating.’ The eight others around the table nod in acknowledgement, her pain physically present around the table—it could be any of us tomorrow. Any of us.

  Jon is sitting on the other side of Sue, alongside his partner Jane. He’s a forty-year-old adult living with CF, who has for the first time had to drop to part-time work in finance because of becoming unwell. ‘I stuffed my knee playing soccer about six months ago. I needed surgery to repair it—’

  ‘And that’s when everything changed,’ interrupts Jane passionately. ‘It has been like entering a whole new world since then, one that is completely different. One day he was working, playing soccer, running, and we were going out at the weekends and taking holidays. Then, practically overnight—after Jon got really bad pneumonia following his knee surgery—everything that we had known started falling apart. And now it’s hard to know where we’re headed …’ she says, leaving her thoughts hanging, like their future.

  The next month others come. Each time the discussion is a little different depending on who is there, how everyone’s feeling, who has been in the hospital. Slowly we begin to know names and learn each other’s stories. We find ourselves sharing details of minor victories and biggish defeats. A different Lisa, another mum, explains what it felt like to learn on one day that both of her two beautiful young children have CF. We watch as she struggles not to burn out in caring for them. One couple is conflicted as their eldest son, now in his twenties, thrives despite his illness while their youngest loses ground.

  After six months a community has begun. Sometimes we pass opinions about what ingredients make the best high-fat milkshake (cream, yoghurt, ice cream, fruit) or how to make homemade salt tablets, while other nights we discuss drug trials or new medical articles that someone has read. There are times when we encourage each other to persist despite the tediousness of daily nebuliser sterilisation—which, it must be said, drives me loopy. There are celebrations and there is shared pain.

  ‘How do you think the group’s going?’ Darryl asks me one night on my return.

  ‘It’s great, though it’s not really what I thought it would be.’

  ‘What do you mean?’

  ‘It’s just that I’m not sure we’ll ever end up changing policies at the hospital or government level,’ I answer while hanging up my coat.

  ‘Why not?’

  ‘For most people it’s all they can manage just turning up once a month. They have so little leftover for changing the system.’

  ‘I’m not surprised.’

  ‘I know. After knowing their stories I’m not either. Living with illness sucks the energy out of people, it just sucks them dry.’

  ***

  Aidan’s fantastic finish at the district cross-country the year before inspires Darryl and me to try to continue developing the passion for running in the kids. After a slow recovery, Darryl’s Achilles has improved enough that he’s able to join the family on evening runs. Eventually we decide we need a goal and so register everyone but Ellis to do the 15km Run for the Kids, a race which raises money for our own hospital in Melbourne. For Aidan and Oliver, aged ten and eight, this will be the longest run of their lives. For Darryl and me, both aged forty-something, this will be a serious challenge.

  For about twelve weeks we all train together, running most evenings with Ellis burning along on his bike. Despite so much practice my speed is still embarrassingly slow and I consistently lag two metres behind our little pack while sporting an oddly uncoordinated gait. The kids egg me on during our runs, especially cheering through one particularly long and taxing neighbourhood hill. It’s late summer, the days stretch on and the sun is often still blazing in the early evenings. Sometimes we return home and flop down together in a sweaty and sloppy pile on the lawn to recover. Other evenings the run ends at the local swimming pool, rewarding our hard work with a wet game of Marco-Polo followed by fish and chips.

  When the race day finally arrives we take the train into the city to meet up with friends. Ellis will be doing the five kilometre course with a friend and her children; they head off to their starting line. We have agreed that Darryl and Aidan will try to run together and Oliver and
I will hope to do the same, though none of us know how difficult that will be with more than 30,000 runners signed up. We are encircled by thousands of bodies—most very fit-looking and sporting more Nike and Asics logos than I have ever seen in one place. Lean men glance at their digital watches, pushing buttons while other runners do lunging stretches and massage tight calves. It’s a cool April morning, perfect temperature for running.

  Within a moment of the gun sounding, Darryl and Aidan slip into the distance, disappearing like pickpockets in a crowd. They’re tough and determined, running hard and completing the course in just over an hour. Quite a bit further back, Oliver and I plod on, through the long tunnel which passes under the city then over the Bolte Bridge spanning the mouth of Melbourne’s Yarra River. We pass cheering supporters, towards the end we hold hands for more than a kilometre, him battling against tears, me attempting to ignore my screaming leg muscles. With only a kilometre left in the race I am completely spent.

  ‘Oliver, I’ve got to walk for a while. I’m sorry. I just can’t run anymore,’ I say.

  The crowds are lining the edge of the race here, watching, but I have long ago abandoned all pride; that was pretty much discarded when I pulled the Lycra running shorts over my no-longer-young backside. At this point in the race Oliver, however, would be humming the ‘Rocky’ theme song, if he was old enough to know it, as he can practically taste the finish.

  ‘Come on, Mum, we’re almost there. We can’t walk now.’

  This is unexpected—and completely unfair. My young son is a pillar of strength while I’m ready to abandon our principles of hard work and dedication in the face of an onslaught of pain in the quadriceps. Then, just to add insult to my personal pain, the crowd around us takes notice of Oliver’s young age and of our tussle. Naturally they jump in on his side, cheering him on with cries of ‘You’re almost there’ and ‘Keep running’. I even hear someone yell, ‘Well done, kid!’

  In the end, he gives up negotiating with me and streaks for the finish. As a mother faced with the prospect of losing my boy in a crowd of thousands, with no back-up meeting place, I have no choice but to run. I focus my eyes on the back of that small brown bobbing head, desperate not to lose sight of him as he passes under the huge and oh-so-welcome ‘Finish’ banner. As I cross the line I nearly tackle Oliver, hugging him, tears of pain and triumph splattering down on his head as I clutch him to my chest.

  ***

  In the midst of this delicious period of excellent health for the boys, I have a fortuitous meeting with the mother of one of Aidan’s new friends. Dr Cath Crock is a physician at our hospital, performing lumbar punctures and bone marrow procedures on cancer patients. She’s also a mother of five and her youngest son is at Aidan’s school. By the time I meet her, Cath has spent more than a decade working closely with families to improve the quality of care and services. From the first time we meet at my house, when she’s picking up her son, we both recognise a kindred spirit.

  ‘I have found over the years that families have so much to offer the hospital and plenty of good ideas,’ Cath explains.

  ‘They would, because they have firsthand experience.’

  ‘Exactly. Plus, they have plenty of time—in the waiting room and on the ward—to think about better ways of doing things.’

  ‘Unfortunately, that’s true. Wouldn’t we love to change the waiting!’

  ‘So,’ she continues, ‘one dad had an idea about that. He said, “We find it so hard waiting, usually it’s at least a couple of hours. Our daughter gets restless and we need some space. Why can’t you give us a pager and page us when it’s our turn for treatment?” So we got a hundred pagers donated and now the families can go to the cafe or the playground or even out to the park while they’re waiting. It’s about respecting them and understanding that their time is valuable and that waiting is really hard on kids.’

  ‘That’s fantastic. What about family participation? I have always thought our kids got better care when Darryl and I were included in decisions and were really participating.’

  ‘I agree, of course. It’s patchy around the hospital right now.’

  ‘I know a few years ago Aidan was in hospital for a week but then we ended up in and out of Emergency several more times. He didn’t want to be re-admitted, which was the hospital’s first response. So the team talked with us and we worked up another approach, though we all agreed that if that didn’t work he would have to be admitted. Aidan was okay with that because he knew he had been given a choice and he had some control. It really mattered to him. And so it really mattered to me. I would love to think that was how care worked every time … but I’m not sure it does.’

  ‘No, I’m not sure either. You have to work with me to improve it.’

  ‘Maybe, but I don’t even know where to start.’

  Luckily, it turns out that the hospital is thinking along the same lines. Within several months an initial meeting of an inaugural Family Advisory Council (FAC) is held and, due to an inability to keep my hand down at the key moment, I am elected Chair.

  The FAC is a collection of twenty family members whose children or grandchildren have been cared for at our hospital across more than twenty-five different services and departments. Several of the parents have been at the bedside through a child’s transplant while others are living daily with the challenges of cerebral palsy, autism or other complex ongoing problems. A few have only used the Emergency Department as short-term patients. There’s plenty of love and pats on the back for the hospital and its staff, together with gratitude for all it has done for our kids. But we all know we’re here to see an enhanced role for families, not only in our own children’s individual care but in policy-making and decisions about broader hospital issues.

  The FAC dives in immediately, serving up the idea of partnership between families and staff as a means to better healthcare. Some staff embrace the concept, recognising the potential for improvements in safety and satisfaction. But others, well, chafe at it.

  We plough on, preaching the key concepts of respect, dignity, shared information, participation and collaboration. Our thinking is that true partnership means patients and families must be brought in to collaborate and work shoulder-to-shoulder with staff. Initially I wonder exactly how much a group of non-medical families will be able to offer a hospital heavy with educated and experienced health professionals. But my hope builds as I get to know the families.

  Shane is a father of four. When his youngest child was born with a serious and life-threatening liver condition, one that looked on occasions to rob her of her life, he gave up paid work, instead sharing days and nights on the ward with his wife. After more than a year living in the hospital, with just weeks of life left in her, his daughter Rose received a liver transplant. Shane has seen up-close the value of parent involvement—watching, checking and contributing as a member of the team. And he also knows a lot about life by the bedside. This knowledge comes out one day at a meeting with executives who are making plans for a new hospital.

  ‘We are happy to have the families involved at some level in the development of the new hospital,’ one executive tells us. ‘For instance, you’ll probably want to contribute to the decisions around choice of food outlets.’

  ‘That’s great. But, to be honest, families have a lot to offer in other places too,’ I reply.

  ‘Possibly. But most of the issues we’re dealing with won’t interest families—things like, say, rubbish collection.’

  ‘Actually,’ Shane says, ‘I’m sure it sounds odd, but I’m really interested in rubbish collection and how that’s going to work in the new hospital. You’re probably aware of how rubbish is collected from each room currently.’

  ‘Uh, no, I’m not up-to-speed on that actually,’ admits the executive.

  ‘Okay, you know those small half-doors under the counter in each room? Late every night they’re opened from the outside, the bins are pulled out, changed and the doors closed again. That process woke
us nearly every night for a year.’

  ‘Oh, I see. I didn’t know that was our practice …’

  Shane continues. ‘Then there are things like the parent bed. Families are really interested in this. They don’t only want a bed that’s comfortable, but one that’s easy to fold up and can be moved to be closer to their child if needed. I used to work in furniture development so I have a good idea of what’s available and what the constraints might be. Could I be involved in this decision?’

  The executive looks surprised; this was not what he was anticipating. ‘Hmm. I guess we could rethink the committee spots for family members.’

  He’s not expecting this level of interest or commitment from families because his own firsthand experience is limited. He has never skulked around dark corridors in his pyjamas at midnight hunting for a nurse; he hasn’t spent ninety minutes in a waiting room with a rowdy toddler wondering if there isn’t a way to predict waiting times more accurately; he has never searched a dozen vending machines on a Sunday evening, hankering for a food item whose first few ingredients didn’t include sugar or salt. For families of sick children, hospitals are integral to a healthy and happy existence for their child and for the family. And those parents are experienced, far more experienced than they’d like to be, in what works and doesn’t work for patients and families in hospital. To them, getting this stuff right—the big and the small—is critical.

  ***

  Following on the success of the Run for the Kids, Aidan again qualifies for the district cross-country, then the zone and—to our absolute joy—places high enough in the zone race to run in the state competition. On the day of his state championship race Darryl is stuck at a conference in Werribee, miles out to the west of Melbourne. Aidan and I have just arrived at the venue, north of the city, when Darryl calls.

  ‘Hi Darryl. How’s the conference going?’

  ‘Oh, it’s okay. But all morning I’ve been thinking about how I’m missing Aidan’s run, getting more and more frustrated. So—look—I’m tempted to just jump in a taxi right now. It might cost a bomb, though. What do you think?’