What do Lupus Nurses do and what would patients like them to do?
Dr Max Field, Reader in Rheumatology and Medical Education, University of Glasgow and Lindsay Clark, Lupus Nurse - West Scotland
Introduction
Specialist nurses services have been an increasing part of the health care service over the past 25 years. The most widely recognized is probably the Macmillan nurse, the first of whom was appointed in the mid-1970s in the United Kingdom, with these individuals dealing with health care problems related to malignant disease, including pastoral care and assistance for patients and their families. However, a survey in Scotland in 2003 showed that although there were over 1250 specialist nurses, the majority (610) were working in an acute hospital and 195 in general practice setting and 495 in both (1) covering management of patients with many disorders including patients with cardiovascular, respiratory and gastrointestinal diseases.
The first Lupus Nurse was appointed in 1978 and started working in Halifax in Yorkshire. There are now 15 Lupus Specialist Nurses appointed across the United Kingdom to provide support for patients. These posts are generally funded for two years in the first instance by LUPUS UK, with the expectation that long term funding would be sought, usually from Health Service or alternative research budgets.
Lupus Specialist Nurses for Scotland
In 2006 LUPUS UK donated funds to support a part-time lupus nurse in the West of Scotland to provide support for patients whilst assisting in future service development for patients in this area. This position was filled in 2007 and the opportunity has been taken to establish a nurse-led clinic service, a telephone advisory line as well as developing audit projects and building a database for SLE patients attending clinics at Hairmyres Hospital and Glasgow Royal Infirmary.
The role for Lupus Specialist Nurses
It was not clear whether these services were the same as those developed in other sites where Lupus Nurses have been appointed. Indeed it was possible that other services were offered which we could also develop for West of Scotland SLE patients. In order to establish what services are provided by Lupus Nurses across the United Kingdom it was felt to be appropriate to establish from incumbent nurses working with SLE patients what defines their role. This was undertaken by telephone enquires with nine nurses in the more well established posts, and then at a conference of LUPUS UK nurses in Autumn 2007. Of the five staff appointed by LUPUS UK in the last 12 months, four have a background in nursing and one in physiotherapy. For the purposes of this analysis the detailed questionnaires have been analysed from the four LUPUS UK nurses who have been appointed in the last year.
Table 1 shows the information about the workload involved from the four newly appointed LUPUS UK Nurses still funded by LUPUS UK, and the nine long-established Lupus Nurses (duration of employment X-Y years), who are likely not to be solely funded by LUPUS UK together with the data.
Table 1 - Data about workload taken from the nurses whose posts commenced with LUPUS UK funding. Long established Nurses (duration 2-9 years), newly appointed (within 12 months of commencement).
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LUPUS UK are involved in roles with patient support with education and telephone help lines being a high priority for their posts together with seeing patients in the outpatient clinic setting. However, all have been involved in teaching students as well. This suggests that there is a consensus about the initial role of the LUPUS UK Nurse (albeit an unwritten one) that can be helpful for clinical staff in applications to LUPUS UK for funding. Interestingly, these are the areas we felt would be required of the newly appointed LUPUS UK Nurse in the West of Scotland.
However, those nurses in the more long established posts (and who are less likely to have LUPUS UK as their sole funding source) provide a broader range of service commitments mainly in adult patient care. Although most continue to provide patient education and telephone advice this is no longer a universal provision rather the more experienced staff are able to provide counselling support, and one delivers this through the internet. The hospital provision also seems to have developed into a more sophisticated clinical service with combined clinics with rheumatologists and other relevant specialists (nephrologists and dermatologists etc) and dealing with new patient referrals. Some long established nurses provide a more specialised service as well, including dealing with teenage patients transferring from the child health service into adult clinics and antenatal clinics for patients requiring contraceptive advice and prepregnancy counselling. The implication here must therefore be that once established in post the staff involved develop skills and expertise to provide a very dedicated specialist advice to patients as a result of the initial funding from LUPUS UK.
From the research point of view, service was also developed to include database management of new patients, reviewing patients involved in various research proposals to support future developments in management of patients with systemic lupus erythematosus.
The Patients/Carers' Views
In May 2008, 160 delegates attended the LUPUS UK Convention in Glasgow. Of these, 81 were patients, 56 family members, 10 carers and 13 others mostly nurses and lecturers. The group was divided into 22 tables each with 2-8 participants. Having been given the information covering what services are offered across the UK delegates formed discussion groups to identify their ideal requirements for a lupus nurse. Each group of delegates was asked to participate in five minutes discussion prior to listing three things that they felt would be most valuable for a Lupus Nurse to undertake and the lists were collected and data collated. Upon completion of the session delegates were given the opportunity to discuss their lists. The list of the patients/carers' suggestions is included in Figure 1.
The top priority went to including telephone advice with 18 of the 22 groups suggesting this was a high priority. Second was a suggestion that the Lupus Nurse should take time at consultations, to provide emotional, physical, psychological support and being there to 'translate' information given by medical staff (16/22). Education (16/22) and providing information (15/22) were also high on the list of top suggestions. Other suggestions include drop in clinics (9/22), and acting in an advisory capacity (8/22) to help understanding the changing nature of the disease top priority of the patients was availability.
Some dichotomies are highlighted regarding areas covered by the LUPUS UK Nurses. These include database management and research clinics, which were not regarded as valuable by the patients and their carers. Interestingly these sections of the nurses' job plans are more commonly represented in those of the nurses who have been established for a longer time. It is important that more information is collected about the funding source for these individuals because it is possible that they are no longer funded full time by LUPUS UK and have taken on a more clinical and/or research orientated role funded by other sources such as the NHS or by other grant awarding bodies, while still providing the educational role in which they started.
Figure 1 - List of patients and carers suggestions for the role of a LUPUS UK Nurse
However, equally it is important to point out that in any rare disorder part of the best practice in the process of disease management is assisted by collecting data from as many patients as possible. The use of databases as in the Scandinavian and European countries are increasingly available on a country wide basis and have proved valuable in research to assist with research studies directed at understanding the cause of diseases like SLE. In addition, the availability of such information on significant patient cohorts can also assist studies to identify new drugs for treatment. While these roles may not be seen as ideals for individual patients, in terms of the long term view it may well be inappropriate not to include these as priorities. As with many instances where there is a dichotomy, many of the issues could perhaps be resolved by better communication between patients and the staff, which highlights that staff training in discussing, these areas may well be relevant.
Nevertheless, the two lists generated by this study share many similarities to that which is being delivered by the newly appointed LUPUS UK Nurses. These comparative data show the similarity of the services that are offered and the services that the patients feel are needed show a significant degree of consistency. This provides potential applicants for funding for LUPUS UK Nurses with a priority list and hopefully should reassure the Trustees that the patients and carers are generally being provided with what is required.
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