Telephone helplines in rheumatology

R. A. Hughes

Department of Rheumatology, St Peter's Hospital Chertsey, Surrey, KT16 OPZ, UK E-mail: rod.hughes{at}asph.nhs.uk

Telephone helplines are increasingly used in clinical practice to provide information and advice to patients and the general public on a wide range of diseases, treatment interventions and self-management techniques. Their popularity reflects a societal trend towards more informed, empowered consumers who expect convenient and immediate access to relevant information.

The national primary care helpline, NHS Direct, has been widely publicized but is only one of many local and national helplines. These include: national helplines for patients with chronic non-terminal pain (Pain Concern UK [1]), incontinence [2] and for the prevention of heart disease [3]; telephone triage in accident and emergency departments [4, 5]; and a Medicines Helpline, providing information and advice about all aspects of treatment [6]. For patients with rheumatological conditions, helplines are provided by national charities such as Arthritis Care, Lupus UK and the National Osteoporosis Society. In addition, many rheumatology departments in the UK provide some sort of telephone information or advice, predominantly to patients with rheumatoid arthritis (RA). Whilst there is wide variation in the content and mode of delivery of different helplines, they are all associated with significant potential advantages to patients and to the Health Service as a whole.

For patients, telephone helplines can provide rapid (sometimes immediate) access to information, advice and support. This information is available to all who contact the helpline and no-one is turned away. They can also ensure that the information patients access is accurate and reliable, thereby reducing the risk of morbidity or mortality and promoting or supporting compliance with treatment regimens. In a chronic, unpredictable disease such as RA, patients, their carers and their families often require access to advice and support outside scheduled out-patient appointments. They may also require urgent treatment to deal with disease ‘flares’. The success of telephone helplines in providing this support is reflected in high levels of reported patient satisfaction [7, 8]. In many cases, the provision of a telephone helpline reflects an attempt to make care more flexible and patient-based. This ‘direct’ mode of delivery of advice can only be informally compared with the traditional route of patient access to advice, which often travelled a complex route via overworked medical secretaries or receptionists towards the final destination of medical staff, often engaged in other activities.

Potential advantages to the Health Service of a telephone helpline include a better informed patient population, more appropriate use of healthcare resources and real cost savings. Although few studies have specifically examined the resource and cost savings attributable to telephone helplines, evaluations of helplines in rheumatology suggest that the provision of specialist advice and support over the telephone may ‘save’ GP consultations [7, 8]. In the only study that has attempted to evaluate the costs associated with a rheumatology telephone helpline, 60% of callers to one helpline stated that they would have consulted their GP had the helpline not been available; an estimated cost saving of £4303 to the health economy over the course of a year [7].

There are, however, a number of potential drawbacks associated with telephone helplines that need to be considered. First, although they may generate cost savings, there are costs associated with their provision and organizational issues that need to be overcome. For example, the estimated cost of providing a rheumatology helpline within one department, manned by nurse practitioners, has been estimated at £10 796 per year (taking into account the cost of returned calls, nurse practitioner time and additional rheumatology consultations resulting from helpline contact) [7]. In other settings, helplines have been criticized for being time-consuming for the staff who run them [4], particularly in situations where the helpline is provided as an additional clinical service, rather than being a stand-alone service with dedicated staff (like NHS Direct). The compromise for clinical helplines is to use answer-phone systems to help manage the workload. However, since around 33% of callers to rheumatology helplines do not expect to have to leave a message [7] and may be reluctant to do so, the mode of administration of the helpline needs to be carefully explained to patients.

A concern with disease-specific helplines is that they will increase demand for specialist consultations. In rheumatology departments, for example, provision of a helpline can and does increase the number of consultant out-patient consultations that are provided [7, 9]. However, these are generally to deal with disease flares and so may not increase overall workload but simply redistribute it so that patients are seen at the times when they most need support or treatment. Moreover, the increased workload is modest; in departments where helplines are set-up to provide advice, support and ongoing disease management, additional out-patient consultations are only required by around 8–9% of callers [7, 9]. Worries that any telephone helpline might become dominated by a few recurrent callers in need of social contact appear, from personal experience of helpline audit, to be unfounded with few recurrent callers and few ‘social’ calls.

The second drawback associated with helplines is the wide variation in their content and mode of delivery, even within the same disease specialty. A recent analysis of six rheumatology helplines provided within the same geographical region [9] identified differences in purpose and in mode of delivery. From the perspective of purpose, one helpline was specifically used to access out-patient appointments, others provided general disease-related advice and support. Whilst this variation probably reflects local priorities, it does not necessarily mean that a patient's needs are being met. Previous research has identified patient concerns around social and psychological isolation, lack of pain control and treatment side-effects that could be addressed by telephone helplines [10]. Despite the variation in content of rheumatology helplines, there is remarkable consistency in patients' enquiries. The greatest proportion of calls (32–44%) across all centres that have been studied are related to worsening symptoms, but patients also frequently seek advice about drug management and side-effects [7, 9].

There is also variation in the mode of helpline delivery. Although all helplines in the study by McCabe et al. [9] were ostensibly manned by rheumatology nurse practitioners or rheumatology practitioners (senior physiotherapists), most used answer-phones to manage the calls and, in one, calls were received by the departmental secretary who passed on the message. There is also variation in the ways in which messages are recorded (from scraps of paper, to systematic recording in a message book with transcription to patients' medical records) [7, 9]. These variations make it difficult to establish a minimum standard of quality for rheumatology helplines (which has implications for clinical governance and legal indemnity). It has been suggested that each department should develop protocols for their helplines to ensure that the information and advice given is consistent and reliable and that these should be used as the basis for regular audits.

Much of the reported dissatisfaction with helplines can be attributed to a lack of training on behalf of the staff who administer them. Patients complain about poor communication skills, conflicting advice or information and inadequate responses to their queries [5]. Several sources, including the Royal College of Nursing, have recommended specialist training in telephone consultations for staff who administer helplines. Such training should include: telephone consultation skills (general communication skills, listening and questioning and empathizing), advice giving (clear communication, following protocols, checking that advice has been understood), negotiation skills and, in some cases, counselling skills [5].

Variations in the content and delivery of helplines, the absence of standardized assessments of quality and the lack of staff training in delivering telephone advice have significant medico-legal implications. Health professionals who administer telephone helplines are legally accountable for what they say or what they might omit to say to patients [11]. Patients may suffer harm as a result of: inappropriate advice based on inadequate assessment or a lack of knowledge on behalf of the health professional administering the helpline; inappropriate secondary referrals (causing treatment delays) or failure to refer when necessary [12]. One of the particular problems with delivering information and advice by telephone is the inability to see the person seeking advice. This makes assessment of their condition difficult because none of the visual assessment non-verbal cues are available. In addition, it may be difficult to extract all the important and relevant information by telephone and, in some cases, the person seeking advice may not be the patient so that the information available for assessment is second or even third hand. There may be the additional problem of language barriers that make it difficult for the health professional to assess the patient and to evaluate whether the advice they give has been understood. In rheumatology, where patients using the helpline have often been receiving care from the department for some time, these issues may be less important because many patients become well-known to the people administering the helpline and much medical information about them is already available.

A specific medico-legal concern is the distinction between advice and diagnosis. Most helplines are manned by nurses who may be trained to give advice, but not to make diagnoses. In many cases the distinction between advice and diagnosis is blurred and training is necessary to ensure that the distinction is understood. This also highlights the importance of medical support for telephone helplines. Doctors should be available to advise on queries or problems raised on the helpline where necessary, and to ensure that appropriate advice or intervention is given to patients. This may have some impact on doctors' workloads, but experience in a rheumatology department suggests that it can be incorporated into the existing clinical workload, often at either end of an out-patient clinic [7].

Most of the medico-legal risks can be managed by the use of standardized protocols and policies, the availability and use of medical support and adequate training in giving telephone information and advice. Meticulous record keeping that details the content and outcome of each call should be cross-referenced to patients' existing medical records where appropriate and policies addressing patient confidentiality should be documented and implemented [11, 12].

Telephone helplines can be an important and useful addition to clinical services. In rheumatology, helplines are valued by patients and can provide clinical advice, emotional support and be used to deliver additional interventions at the time when they are most needed by patients. Although they are associated with healthcare savings in terms of reduced GP consultations, they do have cost and resource implications. These issues should be highlighted to primary care trusts. Most helplines are manned by nurse practitioners in the context of their existing clinical workload, which limits their ability to respond rapidly to many queries and, in most cases, necessitates the use of an answer-phone service. The quality and scope of helplines could be increased if they were viewed as an essential part of nurse practitioners' clinical work, with protected time available to provide the service. There is also a requirement for specific training in telephone consultation to both ensure the quality and consistency of the advice given and to manage medico-legal risk. It is unclear where such training can be accessed and even whether appropriate training courses for medical helplines exist. Inadequately trained staff may resist the introduction of helplines because of their concern about legal risk. By the same token, quality of advice can be increased and risk minimized by the development and use of departmental protocols and policies specifically relating to helplines and by the instigation of an adequate process of record keeping. None of these problems are insurmountable and in a society that increasingly demands immediate access to information, the provision of telephone helplines is likely to become integral to the provision of clinical services.

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