Are your clinical needs being met?

CAPA Steering Committee members (SC) from coast to coast provided their experience and perspective to help inform a recent Nurses Conference in Vancouver. SC members were asked three questions: The first related to unmet needs; the second and third asked for suggestions for improving the clinical experience with the nurse and rheumatologist. Four themes emerged: Education, Information, Access, and Emotional Support.

What are the unmet clinical needs of the person with RA or inflammatory arthritis?

Saskatchewan

I'm seen in a hospital outpatient setting. The nurses are not always the same, but most have been there for years. They are good, warm-hearted and very competent nurses who see patients with every imaginable ailment. However, besides taking weight and height measurements, and handing out forms to fill out, their interaction is almost nil for rheumatology patients. If they saw that my condition had deteriorated over the time since my last appointment, I have no doubt they would mention it to the doctor, but that's about it. On the other hand, they always are quick with the electronic work to get me into x-ray on rheumatologist’s orders or make sure my blood work is done promptly. In the outpatient setting, scripting for specific rheumatological needs might be difficult.

Quebec

What nurses? I have never ever seen a nurse in the clinic, only my doctor. I'm lucky that my doctor takes at least 45 minutes with me when I see him.

Alberta and Saskatchewan

I am unsure if the staff in the rheumatology clinics are nurses or medical assistants/support staff. They take your name, direct you to the office/exam room and afterwards set up another appointment for you. There is minimal rapport with these staff. As for the unmet clinical needs, beyond the scales the rheumatologist completes, quick exam of joints, writing of prescriptions, more time is required for a thorough follow-up examination. Generally patients see their specialist every four to six months; at least 30 minutes must be allocated for each visit to address patients’ concerns (may be unrealistic, with the limited rheumatology specialists available)

New Brunswick

I receive a very high level of care; the addition of a nurse would make it more efficient, likely allowing for more patients to be seen. I like the relationship my type of care has allowed me to have with my rheumatologist. I suspect he feels the same or he would have hired a nurse before now. He is located in a medical center so seeing other specialties isn't difficult. I suppose because I have had RA for so long, I have assembled my own treatment team, located in multi centers.

Ottawa, Ontario

I think of my experience in pediatric rheumatology. The nurse coordinated every bit of my care and she knew the needs of my Mom and me intimately. She ensured that I was aware of clinical changes in my conditions and that I was seen by all of the specialists I needed based on her own assessment as well as that of the rheumatologist. I don't see this happening at all in adult rheumatology care. I can't even recall speaking to the nurse for more than five minutes at my visits. I spend more time with my rheumatologist than with the nurse and wonder how much the rheumatologist even reads the nurse's notes. When I was seen in private practice, I saw the nurse even less.

Comment from another JIA consumer: In my 40 plus years of seeing a rheumatologist, it is only since the biologics came on the market that nursing has become involved with my care in any way. I particularly value having nurses involved with patient care, especially at the pediatric level.

Ontario

In the clinic I attend the nurses are only available to hook up IVs in the Remicade clinic. They have tried having a dedicated nurse to draw blood so that special genetic tests can be done correctly. They have also tried to have a nurse do the initial screening and measure range of motion etc. Also nurses or secretaries hand out questionnaires to each patient as they come in so that BASF scores can be calculated before the rheumatologist sees the patient. My experience has been that the function of the nursing staff varies from one rheumatologist to another.

Ontario, Alberta, Saskatchewan and British Columbia

My experience with arthritis care spans 35 years and can be summed up in two words: No Complaints. I have had exceptional care by rheumatologists and GPs in Ottawa, Calgary, Saskatoon and Vancouver. In all locals other than Vancouver, my treatment, prescribed by a rheumatologist, was administered by a GP and her nurse. They worked as a team monitoring my lab results, assessing my progress and evaluating the anticipated outcomes of the treatment approach. In Vancouver my medication is administered and monitored by nurses who work with my reumatologist in a drug specific clinic. My GP doesn’t have a nurse that I am aware of and functions for the most part to renew my medications or issue prescriptions for cold medication.

How can the clinical experience with the nurse be improved?

Saskatchewan

In a clinic setting dedicated to rheumatology it is more probable that interaction can take place. The initial 'how-goes-it' can be done well by the nurse. She can also explore how arthritis is affecting job performance, family relationships, and overall life roles. Verbally passing this info to the MD immediately prior to seeing the patient can then make best use of time for meds tweaking, selective test scheduling, information sharing and exploration of alternative treatments, life-style changes, and so on.

Quebec

It would be good just to have a nurse working in the clinic. Their involvement in treating people with inflammatory arthritis might result in more education in self-management. We would also be free to express some of our concerns about our health and the treatment plan.

Alberta and Saskatchewan

If there were nurses in the specialist office, they could be better utilized. They can assess your progress, note your concerns, complete pain scales, explore present lifestyle and offer suggestions for staying healthy that are available in your community. They should be an adjunct to the physician. Dialogue is key to rapport building.

New Brunswick

My Rheumatologist has no nurse, only a well-informed receptionist. He recently added another rheumatologist to his practice, but still no nurse. This type of solo practice seems to be the case for the Fredericton rheumatologists who are located in a private medical clinic with many specialties, including family practice, orthopedic, gynecology, opthalmology, plus others. In Saint John, they work with nurses in a clinic setting in the hospital. I believe this is the case for Moncton as well.

Ottawa, Ontario

I'd like to see the nurse play a greater role. I'd like to see the nurse and rheumatologist have a better dialogue about my care and include me in the information sharing. I'd also like the nurse and/or rheumatologist to seek more information about the patient overall, not just focused on their medical condition.

Ontario, Alberta, Saskatchewan and British Columbia

I believe efficiencies in the delivery of health care can be made in the doctor’s office through better recognition and utilization of nurses’ knowledge and skills and greater involvement with patients through focus on preventative or pro-active patient specific care. A one-size fits all approach is an inadequate care delivery philosophy for everyone.

How can the clinical experience with the rheumatologist be improved?

Saskatchewan

My experience has varied from someone who would answer an email, usually within minutes, to someone very difficult to contact. The first rheumatologist was aggressive when fighting for a patient; the second is very quiet and doesn't like aggressive tactics. They both listen, but the first would immediately put action to decisions taken with patients. The second sometimes gets distracted and doesn't follow through. This one rarely lets the patient know what's happening 'behind the scenes' except in a clinic setting at six months intervals, and then usually only with patient prompting. Rheumatologists need to understand that their best allies in health care are informed and compliant patients. They don't achieve this unless they are willing to keep their patients informed and are available enough to receive messages about altered health status between appointments and to provide a response (through secretaries if necessary.)

Quebec

Greater accessibility. Often when a patient is in a flare it is impossible to see their doctor. This is vital because it can mean the difference between stopping a small campfire or a raging forest fire. Intervention is imperative to stop disability and pain. I would also like to see more recommendations for physiotherapy, occupational therapy, surgery or any referral that could improve my disease status and allow me to live a life of quality. This is so important.

Alberta and Saskatchewan

From my experience and from talking with other arthritis sufferers, the key component that is often missing is a working partnership with your physician to explore treatment options with you to determine the best fit. Education and patient empowerment is important in any area of health.

Ottawa, Ontario

A member of Health Canada’s Pediatric Expert Advisory Committee told me she was surprised at how adults are treated in general in our healthcare system. In the pediatric setting, there is more focus on the entire family but the family is forgotten once the patient enters the adult system. We need the adult system to mirror the pediatric system with respect to patient centered / whole person care including emotional support.

Ontario, Alberta, Saskatchewan and British Columbia

My rheumatologist listens, shares new information is prompt with assessments and investigations, referrals, completing forms, returning telephone calls and delivers tender advice. The only way my experience with him could be improved is if he had a magic wand that could deliver a cure for arthritis.