VOL: 98, ISSUE: 43, PAGE NO: 30
Louise Tiffen, BSc, RGN, is addiction therapist, St Martin's Practice, Leeds
Susan Sheridan, BSc, RM, RGN, is clinical nurse specialist (hepatitis C), St James's University Hospital, LeedsHealth care delivery in both acute and community care can be challenging at the best of times. Add poverty, inequity and drug misuse to the equation and the challenge becomes much greater. How do you reach your target group when they may have no idea that their health is at risk?
Health care delivery in both acute and community care can be challenging at the best of times. Add poverty, inequity and drug misuse to the equation and the challenge becomes much greater. How do you reach your target group when they may have no idea that their health is at risk?
It seems logical and practical that someone who has been infected by a debilitating virus such as hepatitis C should have access to expert care. But what should nurses do when clients do not share this view of what is best? This article describes an innovative, largely nurse-led initiative which developed when two teams, one from primary and one from secondary care, came together to solve this problem.
About 3% of the world's population is infected with the hepatitis C virus (HCV), which is predominately a blood-borne virus, but 5% of cases are transmitted sexually (McCreaddie, 2001) and 5% are transmitted vertically (National Institute for Clinical Excellence, 2000). People infected with the virus may develop chronic liver disease or cirrhosis and its complications. In countries for which figures are available, HCV is now the main reason for liver transplants (Mohsen, 2001).
Those at the greatest risk of infection in England and Wales are injected-drug users (IDUs), which includes anyone who currently injects or who has injected in the past. It is estimated that up to 70% of IDUs are likely to be infected with HCV (McCreaddie, 2001).
The Department of Health (1999, 2001a) has published guidelines on the clinical management of drug dependence, which gives guidance on testing for and managing HCV, and on referral to specialist services. It also addresses the provision of 'well-informed pre- and post-test advice'.
The Public Health Laboratory Service runs an ongoing anonymous survey that tests groups of people who are at increased risk, such as IDUs, for HIV and hepatitis B and C. Its most recent report (DoH, 2001b) shows that 60% of people who tested positive for hepatitis C antibodies had not been formally diagnosed, indicating that this group of people are largely unaware of their hepatitis status.
One reason for this is that people who misuse drugs often have difficulties accessing medical services. Thompson (2001) noted that in the past many GPs chose not to accept such clients onto their lists. This denies them not only access to treatment for their drug problem but also access to immunisation, health promotion advice and other general medical services which most people take for granted.
There are currently no national strategies for the management of HCV in England and Wales. One is being developed and aims to address the issues of prevention, treatment and social care for people with chronic hepatitis C. Also, the National Institute for Clinical Excellence has issued guidelines on treatment (NICE, 2000) which will be audited. However, drug therapy is expensive and is effective in only a proportion of clients.
The forthcoming strategy will challenge health workers in general and nurses in particular to use their health promotional skills - especially if an audit of the guidelines confirms that drug therapy is expensive and is often ineffective. Nurses can play a key role in identifying people who are at risk of hepatitis C, giving health promotion advice both to prevent transmission and disease progression, and helping to facilitate testing and referral to a specialist team.
St Martin's Practice is an inner-city general practice in the Chapeltown area of Leeds which includes six GPs, a practice nurse and a nurse-trained addiction therapist. It has an ethos of assisting all clients, whatever their needs, and has a long history of working with people who misuse drugs.
The hepatology department at St James's Hospital in Leeds accepts referrals from across the region, including St Martin's Practice. Over the past three years it has provided care for about 600 patients with HCV across the region. It is also one of five national liver transplant centres.
Identifying the problem
Until 1998, all clients at St Martin's Practice who tested positive for HCV antibodies were automatically referred to the hepatology department at St James's Hospital after a brief post-test discussion. At that time rapid onward referral to a specialist team seemed to be the best course of action for this client group. However, this resulted in a high non-attendance rate (Box 1). In the year before the joint initiative, clients referred from the practice missed 50 appointments. This is a waste of time and money and is demoralising for the specialist team (Box 2).
Evolution of the initiative
Dissatisfied with the non-attendance rate, the two teams decided to investigate. Qualitative feedback from clients revealed that many of those who missed appointments were not sure what to expect, feared visiting the clinic, and had mental images of advanced disease and death. They were also apprehensive about medical terminology, specifically 'liver biopsy'. This was rational and justifiable, given the limited information available to them at that time.
The lack of information meant that clients were not able to make informed decisions. Tones (1996) noted that both hospital and primary care services rarely involved patients fully in decision-making. As a result, decisions are often made on behalf of patients, rather than with them. The Department of Health (2001c) has also cited lack of involvement in decision-making as one of a number of frustrations for patients with chronic ill health (Box 3).
There is evidence to suggest that empowering patients and clients can lead to better engagement with health care and improved health (WHO, 1986; Tones, 1996; DoH, 2001c). For any health intervention to be successful, it must be comprehensible, manageable and meaningful to the client or target group (Box 4). These elements make what Antonovsky (1988) termed a 'sense of coherence'. This means that clients who are encouraged to become involved in their care and in decision-making will be better prepared emotionally and will feel empowered. If they lack adequate information and are excluded from the decision-making process they may feel unease, dissatisfaction and coercion. Their resulting disempowerment is likely to be expressed as non-attendance at outpatient clinics.
Developing the initiative
Nursing and medical staff from both teams got together to discuss the causes of and solutions to the problem. Clients' opinions were discussed, ensuring that any initiative took their needs into consideration. The proposed solution was mutually agreed, realistic and manageable.
Interorganisational guidelines were developed for the referral and management of clients who test positive for HCV. A stepped approach, incorporating structured visits first to the general practice and then to the hospital, was implemented and clients were given more detailed information, backed by leaflets on hepatitis C and the hepatology clinic. It was decided that blood would be taken by the practice nurse so that test results would be available at each client's first specialist appointment.
For the new system to work effectively, each team needed a care coordinator. These were the addiction therapist at St Martin's Practice and a clinical nurse specialist in hepatitis C at the hepatology department. The addiction therapist developed an algorithm detailing each step in the referral process and indicating roles and responsibilities (Fig 1, see p31). This meant that each client's progress could easily be mapped.
The two care coordinators liaise closely, specifically after formal referral and again after discussion with the consultant following the receipt of the results of the blood tests. To address the need for more client-friendly literature, the consultant hepatologist and clinical nurse specialist at the hepatology department wrote a leaflet to demystify the liver biopsy procedure. This was titled Taking a Sample of your Liver rather than Taking a Liver Biopsy.
With greater knowledge and understanding, clients were able to decide whether they were ready to be referred to the hepatologist. Of those referred in the first year under the joint guidelines, some did not need to be seen at the hospital. After examining their blood test results, the hepatologist decided to review them in six or 12 months' time in the familiar surroundings of the general practice.
Those for whom a hospital appointment was recommended were given information explaining why this was necessary. Clients were then able to make knowledge-based decisions and were more likely to attend the appointment. Box 5 shows how non-attendance rates fell after the implementation of the joint working guidelines.
The development and implementation of the guidelines initially increased the workload of both care coordinators so various methods of communication, including face-to-face meetings, were established to ensure the smooth running of the system. Because both care coordinators were encouraged and supported by colleagues, implementation was easier to manage than anticipated. As the system became more familiar, the workload reduced.
Patient empowerment represents a significant shift in how the relationship between health professionals and patients is viewed. The paternalistic culture of the NHS means that patients have historically not had an opportunity to be involved in their care and health professionals have tended to make the decisions. This initiative shows that clients' involvement in all aspects of their care results in positive outcomes not only for them, in terms of receiving optimum quality of care, but also for the health professionals involved.
This has been achieved with a client group that is perceived to be difficult to reach and to provide for. The initiative represents a shift in focus from 'passive patient' to 'empowered client'. And because care is client-centred, providers have benefited from working in a more open and collaborative manner. Other benefits include less time wasted for both teams and a better use of resources.
This initiative could be transferred to all areas of health care, particularly those with high levels of non-attendance. Further research is needed to analyse the costs and benefits of this type of initiative.