From angels to academics
Reproduced from Issue 130 of Arthritis Today
Nurses who want to do arthritis research are finding encouragement in a fledgling academic unit in Leeds . Jane Tadman reports.
From left, Dr Jackie Hill, Naomi Ray and Professor Claire Hale
In recent years, senior rheumatology nurses have moved a long way from their traditional roles as carers of patients, playing second fiddle to medics.
As reported in the last edition of Arthritis Today, specialist nurses or nurse practitioners now lead clinics, manage their own caseloads, complement the role of the rheumatologist and are regarded as an essential part of the multi-disciplinary team looking after patients with arthritis in many hospitals.
But that still doesn't leave very much time for them to pursue a career in research. Nurses don't need a degree to qualify as a nurse, and while a small number of nurses do small-scale research, few are trained to carry out major research projects. There has simply been no mechanism or natural route by which nurses could develop an integrated clinical and academic career - a serious problem for nurses with ambitions to fulfil their academic potential.
arc 's creation of five lectureships or senior lectureships for nurses and other allied health professionals such as physiotherapists and podiatrists six years ago was aimed at encouraging senior nurses to take a step into clinical research. One of the first AHPs to be awarded these academic posts was Dr Jackie Hill in Leeds, one of the first rheumatology nurse practitioners in the UK and a long-term advocate of extended roles for nurses.
Two years after taking up her post as arc senior lecturer in nursing at the University of Leeds, she became one of three directors of a new unit in Leeds called ACUMeN (Academic and Clinical Unit for Musculoskeletal Nursing), a three-way collaboration between the Academic Unit of Musculoskeletal and Rehabilitation Medicine and the School of Healthcare Studies, both at the University of Leeds, and Leeds Teaching Hospitals Trust. Claire Hale, Dame Kathleen Raven Professor of Clinical Nursing, and Kate Lightfoot, head of nursing for musculoskeletal services from Leeds Teaching Hospitals Trust, were the other two directors.
In a nutshell, the aims of ACUMeN were to improve research, education and practice in nursing by providing opportunities for nurses to develop the evidence base needed to provide high quality patient care, as well as helping them gain more training and research experience.
ACUMeN research
Three years down the line, ACUMeN is delivering. The unit, although small, is growing. Based in Chapel Allerton Hospital , where Professor Paul Emery and his team, and the rheumatology inpatients ward, are based, the unit now has two part-time secretaries, and two full-time PhD students, senior nurses Jill Firth and Naomi Ray, with another researcher about to start in post. Jill has a Smith and Nephew PhD Studentship to investigate the problem of foot ulcers in RA, while Naomi, who has a School of Healthcare PhD Studentship is developing a quality of life measure for patients with scleroderma. The unit's work has attracted a quarter of a million pounds worth of funding, and research, both qualitative and quantitative, has been performed and published in a variety of journals, largely on nursing outcomes and patients' perceptions of care.
"As far as nursing is concerned, we are doing research that is relevant to rheumatology nursing and there are not many units that are doing that," explains Dr Hill. "It's still early days, but we're putting together a programme for the future involving both nursing staff on the wards and researchers which will form the basis of research-based care. There's a gap between practice and research, and we are helping to close it."
One of Dr Hill's current major pre-occupations is putting together a multi-centre clinical trial to compare the effectiveness of nurse-led clinics, compared to clinics run by medics. Earlier small studies revealed that they were successful and popular with patients but these results need to be replicated in larger numbers to establish an accepted evidence base.
Other areas of study are exploring the effects that both rheumatoid and osteoarthritis have on patients' sexuality, a topic which the Royal College of Nurses believes nurses should address, and patients' body image. Dr Hill has found that a minority of both RA and OA patients experience problems with sex because of pain, fatigue, and mobility.
ACUMeN education
Patient education is another important remit of rheumatology nurse practitioners, but there's more to it than simply handing out information booklets. Some patients who have just been diagnosed may still be in denial and therefore not receptive to finding out more about their conditions; others years down the line may already be informed.
Jackie Hill has just been awarded almost £30,000 from arc to develop a questionnaire to give to patients with different types of arthritis; osteoarthritis, fibromyalgia, psoriatic arthritis, scleroderma, lupus and ankylosing spondylitis (they have already developed such a device for rheumatoid arthritis) to find out what information would be most useful to them at that particular time to help them cope most effectively in managing their condition.
"We can then set up a programme of education that is tailored to individuals," explained Dr Hill. "This system can then be used by other health professionals; physiotherapists and occupational therapists as well as rheumatology nurses."
Involving patients in their own care is another major role for rheumatology nurses, who are far more likely to have a closer, more personal relationship with patients than rheumatologists.
ACUMeN practice
Senior sister Pauline Fitzgerald (second from left) with members of her team at Chapel Allerton Hospital's inpatient rheumatology ward
This ethos is very obvious in the rheumatology inpatient ward at Chapel Allerton Hospital . The ward is what is known by the trust as a Practice Development Unit, which means the nursing staff involve patients in their own care, and take some pride in doing so. They have also set up a recreation and resource room with a computer and lots of educational material in the former day room.
"We try to focus on patients' needs, and try to put patients at the centre of everything we do, we listen to what they say, and ask them to tell us what they want," explained senior sister Pauline Fitzgerald, pointing to the Idea of the Week on the ward notice board. (Suggestions include easier-to-use shower controls, and a plea not to clean the bathrooms at mealtimes because the smell of bleach puts patients off their food.)
"Because we are part of ACUMeN we try to base our practice on what research has proven to be the most effective as far as we can, even in small projects."
One recent example was a suggestion from a patient for music to be available in some of the ward bays. While one nurse went on the Internet to find out if music was beneficial to patients, another sought the views of other patients. Once a consensus was reached, ward staff got some funding from the local WRVS to buy some CDs and a radio for those patients who wanted them. Patient power in action!
ACUMeN and nursing education
The university's School of Healthcare, which educates nurses, now includes a post-registration module in rheumatology, and runs short courses in rheumatology within the trust. "We're building up and improving the knowledge base of health care professionals in Yorkshire and its environs in musculoskeletal conditions," explains Professor Hale.
ACUMeN has a steady stream of visitors from this country and abroad, mainly specialist nurses, and the unit is a well-respected resource and information centre for senior nurses.
Jackie, Claire and Kate are proud of what ACUMen have achieved, and believe that a few years down the line Leeds will be the base for a Professor of Rheumatological or Musculoskeletal Nursing. "We're establishing a legacy for the future. We are trying to improve the basis of rheumatology nursing, and when a Chair of Rheumatology is established this is where it would come from," says Jackie Hill. "There is nowhere else in the country at the moment where that would be able to happen."
