A hip heals and a balcony blooms

(Senator Pat Carney's unique keynote address at the ACAP Summit this Fall comprised not only a wonderful personal recuperative experience, engagingly told, but a moving tribute to the special healing power of collective action, creativity, and emotional support. At CAPA’s request, Senator Pat has kindly agreed to let us share the text of her address, reproduced below.)

Tonight, instead of a speech, I am going to tell you a story about Jonquil’s Garden. It is a true story, based on my post-operative experience in Vancouver’s GF Strong arthritis program this summer, and it illuminates how people with arthritis create beauty in the grim reality of their often restricted, always pain-filled lives. The arthritis program at GF Strong is, I believe, unique in Canada. For more than 30 years, the 18-bed facility has focused on the in-patient rehabilitation of people with arthritis, mainly rheumatoid arthritis but also other forms of inflammatory arthritis such as Ankylosing Spondylitis, lupus and sometimes complex osteoarthritis. A daily regime usually includes three 40-minute sessions of pool and physiotherapy, plus another 40 minutes of OT. We don’t have time to feel miserable.

While about fifty-five per cent of patients, or clients as GF Strong calls us, are post surgical, forty-five per cent come from rural communities where no treatment exists (including me, three ferries from home port) or they come from home care for intensive rehabilitation and arthritis education. Rehab and education are the important and often overlooked components of recovery from this crippling chronic disease, which afflicts one in seven Canadians.

Jonquil has Ankylosing Spondylitis, the form of arthritis that involves the inflammation of the bones around the neck and back, leading to immobilizing stiffening of the spine. While new medication has helped control or delay the onset of symptoms, this disease is difficult to cope with. Our stay overlapped by only a few days but as she left, Jonquil mentioned that maybe the rest of us could start a garden on the ward’s balcony. It was a shame, she said, to leave the balcony neglected.

Balcony? This was my second stay in GF Strong—I had one total hip replacement last year and a second one this summer—and I never knew our floor had a balcony. My neighbour across the hall, an RA client also called Pat—she was Pat One, I was Pat Two, or Double Trouble, the nurses called us—wheeled our wheelchairs past cabinets, tables and chairs stored at the end of the hall and found that yes, indeed, the doors swung open on to a deserted and decrepit balcony, also used as a storage area for unused equipment. It faced east, towards the sun. It was partly protected by sheets of rain-streaked glass, stained with bird droppings. Along two sides of the dirty floor and behind the stacked chairs and tables, were abandoned planters, partially filled with soil too fatigued to nurture a dead bamboo tree.

Hmm, we hummed. The one thing we lacked at GF Strong was private spaces for personal visits and phone calls. This balcony had possibilities.

A popular departing gift from grateful clients is a box of Purdy’s chocolates. Many of us in the arthritis program do not need the extra calories. What if we gave plants instead? We discussed this over 7 p.m. tea in the common room, a popular gathering in a facility which serves supper at 4:30 p.m. in the afternoon.

But where to start?

What followed was an amazing sequence of caring actions by people with little energy or time to spare. That evening, our nightshift nurse called maintenance and had the hall clutter cleared away so we could negotiate our wheel chairs onto the balcony. The next day a friend, a former president from the BC and Yukon branch of The Arthritis Society lugged in several bags of container soil that she had found on sale. We loaded the bags on our wheel chairs and navigated our way to the balcony.

So what? We had some soil, but no means to dump it in the planters. She had a bad back. As post op hip patients, my colleagues and I were prohibited from twisting, turning, rotating, or Heaven forbid, breaking the 90-degree rule, which prohibits bending the trunk of the body below right angles. We couldn’t move the soil ourselves, so to the rescue came my roommate Sharon’s healthy young son and his girlfriend, who were pressed into the cheerful service of dumping and spreading the soil.

The next day after work, Jan, the head of GF Strong’s recreation therapy loaded Pat-One and Pat-Two into the van in our wheel chairs—which involves a lot of work, raising us on a platform to the van, buckling our chairs to the floor of the van—and drove us to a local garden center, where she had to reverse the whole process so we could prowl the plants. “We’re seniors!” Pat-One cried. “We get a seniors discount! We’re from the hospital - we get an education discount!” For the price of about three boxes of chocolates, we loaded up our chairs with flowers and headed back to the hospital, where Jan coaxed the security guard to dolly our foliage up to the balcony amid the coos and cries of our colleagues.

But now what? We couldn’t actually plant them with all those precautions and prohibitions on our movements. Just then another visitor sailed on to the balcony. “Ooh,” she said, “I love gardening!” And within 20 minutes she had filled our planters, under the crossfire of directions from her wheel chair audience. “Maybe the delphiniums there – no – too close to the astilbe – the impatience should go there…”

What next? We had the planters, but no means of watering them. There was no water on the balcony. The teatime gang decided we could each take our bedside pitchers and water ourselves, even numbered rooms on even days, odd numbered rooms on odd days. Edith, the oldest member of our group, carefully documented the room numbers. Marilyn, an artist and RA client with 29 pieces of metal in her right ankle and foot, painted a poster illustrated with flowers, hearts and green thumbs which spelled out the watering instructions. The physio and occupational therapists installed a bulletin board next to our therapy schedules to mount the poster on.

A spouse was dispatched to the hardware store - and what treasures our spouses are - to purchase a thick handled trowel and other garden tools. Abby, another RA client, wheeled over to the dollar store in the mini-mall to buy a watering can and a box to hold the utensils. Sharon took them to the arts and crafts class to engrave GFS initials on them to discourage theft. Everyone did something, what ever they could, no matter how small, to help in our arthritis garden.

Visha, our popular LPN, brought in lilies of the valley from her garden. Elizabeth, our second shift nurse, weeded during her break. Bev, head of the arthritis program, visited a local home center and used a client’s cash gift to buy high round tables that we could park our wheel chairs under to think over coffee. Other visitors brought plants or swept the floor. And two clients from the neuromuscular skeletal program, which shares our floor, wheeled down our hall, took a look at our balcony and said, “We can do this too!”

On my last day Dorothy, our dietician, announced she would have a surprise for us on the balcony at 3:00 pm. When we arrived that afternoon, we found a special tea spread out for us, complete with watermelon and cantaloupe slices, low fat muffins and tofu—how Dorothy pushes tofu! In ten days we had created Jonquil’s garden. We made a toast to our blossoming oasis with iced tea.

When I went back on my walker a few weeks ago to visit my friends who were still in therapy, I saw how the garden was thriving. As one client would leave GF Strong, often adding a plant to the green oasis before they left, another was enrolled in the garden maintenance. And when I pushed my walker down to the NMS balcony, I found that their gardeners were practicing the concept of adapting the workplace environment to accommodate the disabled; they had installed accessible flower boxes on the railings and walls instead of planters!

Last month Jonquil returned to GF Strong for post-op rehab after knee surgery. The garden, she reported, is still blossoming. She emailed me her great pleasure that her dream had come true.

I have told you the story of Jonquil’s garden because it is a metaphor for all our work in the world of arthritis. All of you here this evening contribute in whatever way you can to improving the quality of life for people with arthritis.

Here tonight are arthritis stakeholders, including formal and informal care givers, people with arthritis, health care providers, provincial and federal government, arthritis researchers and rheumatologists, voluntary associations, educators, and pharmaceutical industry. Over the course of this summit we will work together to create new ideas and new solutions to our common goal: a world without arthritis.

There is much work to be done. We face an uphill battle. We need more arthritis research. I am proud to be a founding director of the Arthritis Research Centre of Canada, based in Vancouver, where Dr. John Esdaile serves as our Scientific Director. There have been encouraging advances in research and in the networking of research teams, as last weekend’s Canadian Arthritis Network conference revealed. There has been a corresponding growth in the education and development of rheumatologists in Vancouver, until recently an endangered species in the medical environment. There has been a truly astonishing recognition of the important role that consumers, or people with arthritis, can play in research and its relevant application to our lives. Here Summit co-chair Cheryl Koehn has shown exceptional leadership. Consumers are an important part of CAN and of arthritis institutions, such as ARC, while other agencies have been slower to recognize the benefits reaped by including people with arthritis in their organizations.

There is a lot to be done in the area of patient care and in the field of arthritis rehabilitation. Every person with arthritis should have access to the treatment, education and support offered by agencies such as the Mary Pack Arthritis Centre in Vancouver. But such agencies simply don’t exist in many parts of Canada. One informed estimate is the difference between what care patients should get and what they actually do get is fifty per cent.

There is a truly shocking lack of patient care and rehabilitation available in rural Canada, including smaller towns and centres, which is unfair. A visit every few months by a rheumatologist to a region is grossly inequitable. So is the need for patients to drive hundreds of miles, sometimes eight hours or more, for treatment by arthritis specialists.

There is an urgent need for greater education to be made available to people, not only with arthritis but for the physiotherapists in private practice who provide an increasing share of treatment options as provincial medical plans curtail coverage. Cutting funding for physiotherapy is surely one of the most uneconomic moves that provincial governments have made, given the huge benefits that physiotherapy provides. Arthritis and musculoskeletal problems are the most common reason why people have to stop working in Canada, with an estimated cost of $13.6 billion per year. Physiotherapy enables people to return to work earlier, or possibly remain in the work force. One of the studies I am involved in is aimed at developing consistent guidelines for physiotherapists who are working with post-op total hip replacement patients. It is unnerving to think such guidelines do not presently exist.

There is an urgent need for more rehab facilities to provide care not only for an aging population but to also target the younger population. As osteoarthritis research indicates, there are benefits to more aggressive treatment on increasingly younger patients and more candidates than ever are appearing for treatment, including surgery. Last year after my surgery the people in my pool program were largely my age. This year, most are much younger—from 45 years to 50. Their recovery time and their expectations are much different. They want to know if they can go mountain biking or downhill skiing by Christmas. I just want to get off my cane!

While more operating room time is now provided to cope with long wait lists, the number of rehab spaces is failing to increase at the same pace. This is counterproductive. Access to proper education and rehab improves people’s recovery, productivity and quality of life.

And of course, we continue to search for better medications. The need here is great. Although it was not a cure, Vioxx relieved many arthritic symptoms. When it was taken off the market last September due to the excess risk of heart attack and stroke, it appeared our treatment prospects looked bleak indeed. While research consistently looks for a cure, we support the dedication of those searching for effective medications to relieve our symptoms.

The shortage of health providers means that, in many instances, the needs of people with arthritis are not being met. There are lengthy delays to get an appointment with health providers, as well as long wait times for joint replacement surgery and new medications are not being listed equally on all provincial programs. People with arthritis often do not have access to specially trained multidisciplinary care teams (rheumatologists, orthopedic surgeons, physical therapists, occupational therapists, nurses, social workers and psychologists).

The number of people with arthritis is growing and is estimated to increase at the rate of one million more Canadians per decade, at least until the year 203l. In spite of the growing numbers of people with arthritis, the number of rheumatologists (physicians trained to diagnose and treat arthritis) is decreasing at an alarming rate. There are currently only 270 rheumatologists in Canada instead of the 443 that are needed! Physiotherapists and OT’s are also in short supply.

There are more than four million Canadians with some form of arthritis. In Canada, there are more than 600,000 people disabled by arthritis. It is not just "aches and pains".

Addressing the needs of Canadians with arthritis involves bringing together the talent, resources and dedication of people with arthritis, arthritis organizations, health care professionals, universities, and provincial and federal Ministries of Health, as the Summit has done.

Finally, Canada needs a comprehensive Arthritis Strategy in every province (including the territories).

In order to serve the growing number of patients with arthritis, the proposed strategy in each province (including the territories) needs to find ways to provide:

• Adequate numbers of rheumatologists and other health care professionals to care for arthritis patients in all regions of Canada.
• Reasonable wait times for joint replacement surgery.
• Proper arthritis training for all members of the health care team.
• Equitable access across Canada to safer and more effective medications.
• Appropriate rehab and treatment services in the community.
• Tax relief for vehicle and home modifications.

Priority Action is needed and like Jonquil’s garden, if we all work together we will achieve our goal of a renewed commitment to creating a world without arthritis. This Summit is a major advancement towards that goal and I congratulate you all for being here.