Rheumatology Unit, University of Bristol, Bristol Royal Infirmary, Bristol BS2 8HW, UK
Traditionally patients with rheumatoid arthritis (RA) receive their hospital care in the UK via regular out-patient follow-up appointments. RA is a chronic, variable disease, which requires a continuing long-term programme of follow-up [1]. This tends to be a pattern of regular repeated appointments (e.g. every 3 or 6 months) and does not take into account the uniqueness of an individual patient's disease. This system of follow-up can account for approximately 75% of a rheumatologist's workload [2]. Yet it is costly, both in terms of medical time and expertise and in the use of general National Health Service (NHS) resources, and can be inconvenient and costly to patients, especially those who are still in full- or part-time employment. Therefore, any alternative approach to follow-up, which may result in improvements to patients and the multi-disciplinary health care team, has to be worthy of consideration.
The standard NHS appointment system is overburdened and unwieldy. It is frequently unable to cope with sudden demands for change such as a patient wishing to bring an appointment forward for any reason. Patients wishing to expedite appointments may have to go through the procedure of contacting their general practitioner (GP), waiting for him to write to, or telephone, the hospital to request the appointment change, often to be told that nothing can be done as there is no leeway in the appointment system to facilitate a change. This makes the system slow, frustrating and disappointing for the patient. To put it in a nutshell, patients are often seen in the out-patients clinic when they are relatively well and require no changes to their treatment, but cannot be seen when they need to be, because the appointment system is too congested and inflexible.
Faulkner and Frankel [3] suggested various options to try to improve out-patient services. These included such measures as lengthening routine follow-up appointments (e.g. from every 3 months to every 6 months) and discharging more patients. This has been tried at some centres, but unfortunately with minimal impact on overburdened systems.
The traditional system makes many assumptions. It assumes that by seeing patients on a regular basis we are acting correctly and that we are doing what is best for them. It assumes that we know how often to see our patients and that the patients themselves do not know when they need to be seen. These assumptions may or may not be correct, but their consequence is that patients and health care professionals can have poor perceptions of the out-patient follow-up system, leading to stress, rushed consultations and possible unsatisfactory outcomes from an appointment. One solution is to lengthen the interval between out-patient reviews but to provide the patient with SOS appointmentsthe facility to ask for a more urgent appointment if they think they require it. However, how can one be certain that such a system will be used appropriately and that it is safe for the patient?
There are many questions that we should address: Will the severity of patients' symptoms deteriorate if we reduce the frequency of patient reviews? Will patients recognize when an appointment would be beneficial? Will patients, for whatever reason (fear, apathy or underestimation of disease severity), not use the helpline to request help? Will they make many unnecessary appointments? Will GPs be comfortable with a system in which patients may turn to them for rheumatological advice? Will patients feel confident in and satisfied with this arrangement? Can such a system work in practice? Will it cost more or less than the traditional arrangement? The greatest concern might be that a patient who consistently had not requested an appointment would steadily deteriorate and develop irreversible deformities, which may have been prevented. Any change in the system will be a major undertaking and in itself will require a huge commitment in time and resources. It should be thoroughly researched in a safe environment before it can be implemented as a standard service.
Shared care systems have been tried with other disease groups with encouraging results [4]. Such a system for RA patients would require the co-operation of the local GPs and a radical reworking of the out-patient clinic. Both of these are possible. GPs would care for their patients on a day to day basis, with the option of a rapid referral to a rheumatologist and specialist multi-disciplinary team. Potentially this means that the workload for GPs could be increased, but as each GP has relatively few patients with RA, any increase may not cause a problem.
To provide rapid access to a rheumatology clinic, the patient or his GP could request an appointment for this clinic via a telephone helpline. These clinics would be ring fenced to guarantee availability. Patients would be given open appointments and reassured that they had not been discharged from the clinic and that they could telephone and request an appointment whenever they felt it was necessary.
The helpline and the opportunity to decide for themselves when they wished to see a rheumatologist would empower the patient to take more responsibility for their disease and its management. Suddenly and perhaps for the first time we would be tentatively acknowledging that patients can understand their own disease, especially those who have had RA for a considerable time. This would be especially valid given that RA is such a variable disease both in its severity and manifestations and in its uniqueness per patient.
Health professionals are used to having large degrees of control and influence over patients. We are used to deciding when we see them. We do this with the best of intentions. Although we want to help our patients and help them manage their disease, it can be hard for us to hand that responsibility back to the patient.
What is needed to address the questions raised above is a randomized controlled trial of a shared care, open access system, assessing outcomes related to disease status, confidence and the use of resources. There would need to be a safety net, a method by which the condition of the patient could be monitored and patients identified if it seemed that their disease status was deteriorating.
In Bristol we have been conducting a trial of a shared care system. Full results are being prepared for publication, but preliminary analyses have already found answers to some of the questions mentioned above. We have found that given access to a helpline, patients do make use of it [5]. When they make an appointment it is usually for a good reason [6] and an overview of general patient status showed that, if anything, they were better off at the end of 2 yr than the control group of patients who received routine appointments [7]. We have provided a flexible follow-up system that has not become congested. Initial indications are that we can better satisfy the needs of our patients by seeing them when they wish to be seen and yet allow them the convenience of visiting their GP for more day to day enquiries. We may even be able to reduce the use of NHS resources. As professionals we should derive much satisfaction from offering our patients a system of care that is really working for the patients and is being worked by the patients. Perhaps we are finally beginning to get our priorities right?
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