On behalf of the South and West of England Rheumatology Consortium: Royal National Hospital for Rheumatic Diseases, Bath BA1 1RL
1 Hereford Hospitals NHS Trust, Hereford HR1 2ER
2 University of Bristol, Bristol BS2 8HW
3 The Royal Hampshire County Hospital, Winchester S022 5DG
4 Salisbury District Hospital, Salisbury SP2 8BJ and
5 Ysbyty Gwynedd, Bangor LL57 2PW, UK
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Abstract |
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Objective. To conduct an activity analysis of six NHS Trust rheumatology telephone helplines in the south and west of England.
Methods. Serial data were collected on the first 100 calls received on or after 1 January 1999 by six rheumatology helplines in the south and west of England. Background information was gathered on the management, availability, setting and purpose of each helpline. Data on the time taken to manage these calls and patient satisfaction were not collected.
Results. Patients with rheumatoid arthritis were the major users and no significant differences were found in the outcome of their calls between centres, but wide variations were revealed in the management of the helplines, the populations they serve and the services they offer.
Conclusion. The rheumatology helpline services in six NHS Trusts in the south and west of England were shown to be the same in name only. They lacked uniformity in the delivery of care and accessibility to relevant patient groups. The geographical variation in service delivery may result in patient dissatisfaction and confusion if a number of hospitals are attended over the course of a patient's chronic disease. Further research is required to identify the helpline needs of the broader rheumatology population, patient satisfaction, outcomes and system costs, and to progress towards the development of national and European guidelines.
KEY WORDS: Rheumatology, Helplines, Telephone, Guidelines.
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Introduction |
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Previous research has shown that the successful establishment and smooth running of a helpline relies upon the existence of suitable departmental policies, protocols and audit systems [4]. This research has led to the recommendation that staff are trained in telephone assessment, the giving of advice, and documentation skills. The purpose of the helpline must be defined explicitly [2] and the medicolegal implications and documentation requirements should also be considered before its establishment [5]. The Royal College of Nursing is currently updating the advice issued to nurse telephone consultation services with the aim of developing clear professional guidelines. In addition, a working party consisting of representatives from support services and registered charities has already formed the Telephone Helplines Group. This group has published Telephone helplines: guidelines for good practice [6], which provides clear guidelines for the establishment and running of an effective and professional telephone service.
Telephone assessment and advice by nurses has been shown to be safe and effective in many health-care systems [7]. Indeed NHS Direct, a new 24-h National Health Service helpline and the largest helpline service in the UK, is primarily staffed by nursing personnel. NHS Direct aims to be a convenient, interactive gateway [8] for the general public to access advice on symptoms, treatment and referral to other health service amenities. Parker [5] warns, however, that nurses are not diagnosticians, whether the patient is in front of them or at the end of a telephone. It is recognized that, when conducting telephone consultations, a fine line exists between making a diagnosis and offering advice, but this line must be drawn in favour of the latter. The UKCC (United Kingdom Central Council for Nursing, Midwifery and Health Visiting) [9] requires registered nurses to refuse to undertake any task that they feel inadequately qualified to conduct in a safe and skilled manner, and giving advice via a telephone helpline could be considered as a task requiring additional training. Parker [5] clearly states that inexperience is no defence in the eyes of the law, and therefore clear professional guidelines and appropriate training must be a high priority.
Published literature is available on the use of helplines in general practice [10], accident and emergency departments [3, 4], emergency incidents [2] and general health-care advice [1], but is scant in relation to rheumatology. This is particularly surprising, as a large number of voluntary and charity-supported helplines exist for general rheumatological problems, such as Arthritis Care, or more disease specific problems, such as the National Osteoporosis Society (NOS) and Lupus UK. These helplines offer information, support and advice on the patient's medical condition but do not offer counselling for personal problems that may be associated with the condition. However, some (e.g. NOS) state that referral to other organizations for counselling may be discussed during the telephone call.
Rheumatology helplines currently operate from a number of hospitals nationwide. They offer support and professional advice on the management of rheum atological conditions but may also include a medication monitoring service, and provide an opportunity to discuss the need for out-patient consultation, hospital admission or referral to other members of the multidisciplinary team. Due to the breadth of implications that living with a chronic disease may have for patients' personal lives, the calls may also encompass support and advice on personal problems. The helplines are usually managed by nursing personnel and are available to patients, their families and carers, general practitioners and district and practice nurses.
Rheumatology helplines commonly operate an answerphone system to record calls either outside normal working hours or when nursing personnel are involved in other clinical duties. Due to the small number of personnel qualified to manage these helplines and their large clinical commitment, the answerphone may be in operation for the majority of the day. Anecdotal evidence from the six participating centres suggests that callers are sometimes reluctant to leave a message on an answerphone and would prefer to speak directly to someone or not at all. Data were not collected in this study on the incidence of missed calls, reasons for not leaving a message or time spent in answering calls. Further research is already under way to explore these issues.
Arthritis Care, in their report Understanding people's everyday needs [11], state: a telephone helpline with an answerphone should be provided to enable patients to contact the rheumatology department between appointments when they need urgent attention or treatment, or concerns about flare ups, side effects of drugs etc., and go on to say where helplines exist there is clear evidence that they are valued and used appropriately by patients. What does not exist is published evidence of the current services offered by these rheumatology helplines within the UK; anecdotally, there appears to be wide variation with no national or European guidelines to provide a more cohesive structure. The South and West of England Rheumatology Consortium (SWERC) was identified as an appropriate group to conduct an activity analysis of current practice as it comprises allied health professionals and researchers from six rheumatology centres who all manage a rheumatology telephone helpline within their workload. The authors' host institutions see these helplines as a valuable method of communication and support for their patients. The aim of the activity analysis was to accurately record the helpline services currently available within these six centres, monitor the types of calls that were received and identify any similarities or differences between each service.
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Methods |
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In addition to the call data, each centre completed a questionnaire that provided general background information on the management, availability, setting and purpose of their helpline. All data were entered in an Excel database for further analysis.
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Results |
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Mechanism for taking calls
All helpline calls were received in rheumatology offices that were manned during office hours and had answerphone support. One centre transferred calls to the ward out of hours (centre B). Calls were taken by rheumatology specialist nurses (grades FH) or senior physiotherapists employed as rheumatology practitioners. These were senior, experienced personnel who had specialized in rheumatology and regularly worked independently. The exception was centre A, where, during the course of the audit, a grade-E nurse (less experienced and used to working under supervision) managed the helpline during the 6-month absence of a grade-F nurse. In one centre (centre C) calls were taken by a secretary and passed on to the specialist practitioner. Only in centre C was there immediate access to the patient's medical records when calls were taken; in all other centres notes were obtained via medical records departments, which often led to a delay. All centres recorded messages, but the range of methods included the use of individual patient record forms, a dedicated book, and informal pieces of paper. All centres stored written records of messages for future reference. Only in two centres were the messages transferred to the patient's notes on every occasion (centres B and C); three centres transferred messages when they were considered important to the patient's condition (centres D, E and F); one centre did not transfer messages to medical notes at all (centre A).
Nature of patients and callers using helplines
The intention was to record the first 100 calls from each centre from 1 January 1999. This was achieved within 614 weeks for centres B, D, E and F, by which time centre C had received 60 calls. Centre A had received only 30 calls by 18 weeks, when data collection was discontinued (Table 1). The total number of calls recorded was 490.
In 87.5% (429/490) of cases, the call was made by the patient or carer, in 5.3% (26 calls) by the general practitioner and in 3.8% (19 calls) by the district or practice nurse. The majority of calls were from patients with RA (367 calls, 75%), the remaining calls being spread between a variety of diseases (Table 2).
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Reasons for and outcome of calls
Helpline calls were made for a variety of reasons (Fig 1) but were most frequently due to exacerbation of disease (216 calls, 44%), reflecting the unpredictable and fluctuating course of RA, which formed the bulk of the diagnoses. Fewer than 4.5% of calls (21 calls) were made specifically to request an out-patient appointment. Enquiries about the monitoring of drugs or drug-related questions totalled 31.8% of calls (13 and 18.8% respectively). It is possible that information about the more diverse nature of the calls was limited by the need to categorize the reason for the calls during the analysis.
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Overall, 27.5% of calls resulted in an out-patient appointment being offered, but this ranged from 77% in centre A to 8% in centre B. Much less advice was given by centre A's helpline (16.7%, overall centre average 53.5%), where the grade-E nurse manned a helpline set up for the purpose of accessing appointments.
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Discussion |
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The minority populations, i.e. those with connective tissue diseases (CTD), had no access to the rheumatology helpline in one of the centres (centre A) and only half of the participating centres gave their helpline number to all patients (centres C, E and F). Although CTDs are relatively rare, it is disturbing that the local rheumatology helpline may not be available to these patients. CTDs are chronic and frequently involve both physical and emotional distress relating particularly to visible disfigurements. Their treatment and course are commonly complicated and, in the case of lupus, frequently affect a younger population [12]. This patient group would appear to have great need for the support and advice that a rheumatology helpline may provide.
The grade and profession of the individuals managing the helplines also varied across Trusts. Stark et al. [2] recommend that professionals who staff helplines should have appropriate knowledge of the subject and sufficient communication skills to deal with callers effectively and sympathetically. It is of interest that centre A's helpline (managed by a more junior nurse) gave much less advice to callers. Rheumatology clinical nurse specialists or paramedical staff managed the remaining five helplines, and their relevant clinical experience and expertise may be ideal for this role. It is important that these individuals work in accordance with the guidelines from their individual professional bodies whilst ensuring that they maintain their personal and professional accountability with regard to role development.
The recording in the patients' notes of advice given or action taken varied considerably: the staff recorded the outcome of the call, if at all, only when it was considered important. This decision was not based upon existing guidelines or protocols but more on the individual's professional judgement. The professional status of these individuals may be jeopardized if an ad hoc method such as this continues without the safety net of written protocols.
This study looked at existing rheumatology helpline services, but due to the lack of a gold standard we are unable to say which of the six services, if any, were of high quality or indeed if they were beneficial to the caller. Our data informed us only of current patient/carer practice; it did not tell us what our patients or other health professionals would consider an ideal service. To develop such a standard, further work and wider consultation are required. Data are currently being collected from patients, carers, general practitioners and other relevant health-care professionals to elicit their opinion on a range of issues, including who should manage a rheumatology helpline, when the helpline should be available, and what services should be offered. Questions about the usefulness and value of such a helpline are also included in this study.
The time and cost of managing such a service must also be considered. Typically, the more experienced, and therefore the more expensive, health professionals manage these services. Further work is required to assess whether this cost can be justified against such benefits as a reduction in the number of hospital appointments and fewer days lost from work. Conversely, improved access for patients to hospital services may increase the number of referrals to both secondary and primary care physicians. A cost analysis study is currently being planned to investigate these issues.
Conclusions and future research
Rheumatology helpline services within six NHS Trusts in the south and west of England lack uniformity in their delivery of care and accessibility to relevant patient groups. The geographical location of a patient will determine what type of service, if any, they receive. We have yet to establish whether this is a national problem, but without national and European guidelines rheumatology helpline services may continue to develop in the diverse manner that we have described. Further work is currently under way to develop such guidelines, but clearly this will require a number of studies, as suggested above. Our ultimate aim is to develop patient-driven national and European guidelines that are endorsed by a recognized rheumatology body. All rheumatology patients should have equal access to a high-quality rheumatology service, and only with further research will we able to say whether a helpline should be included within this.
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Notes |
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References |
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