Patient and carer experience of obtaining regular prescribed medication for chronic disease in the English National Health Service: a qualitative study

Chronic diseases are the major challenge facing the global health economy. The World Health Organization estimates that non-communicable diseases account for more than 60% of deaths worldwide [1]. Within the United States it is predicted that five long-term conditions (cardiovascular disease, cancer, chronic respiratory disease, diabetes, mental health) will cause a cumulative output loss of US$ 47 trillion over the next twenty years [2]. Around 15 million people in England have a long-term condition [3]. The number of chronic diseases per person increases with age [4], and these patients are the most frequent users of healthcare services. In England and Wales, patients with chronic disease account for 50% of General Practitioner (GP) appointments and 70% of all inpatient bed days [5]. Currently the flow of policies is aimed at integrating services for long-term conditions and enabling patient choice and voice in service provision [6, 7]. Alongside the move towards a more seamless approach to service provision, medicines management continues to play a significant role within chronic disease management. The National Health Service (NHS) in England spent £8.2 billion on prescription drugs in primary care in 2006, around a quarter of the total expenditure on primary care. Ninety-eight per cent of these drugs were prescribed by GPs [8], with 12 of the 20 most frequently prescribed medications being for chronic diseases. Drugs for cardiovascular disease are the most commonly dispensed and cost the NHS £1.9 billion in 2006 [9].

Within the English NHS, the majority of patients with chronic diseases are over the age of 65 and are prescribed drugs with no charge to the patient, with older people receiving an average of 38 items per year [8]. In England, regular medication for stable long-term conditions is normally managed via a repeat prescription process, whereby prescriptions are issued without a consultation but are regularly reviewed by the GP [10]. The use of repeat prescriptions has vastly increased over the past 30 years, reflecting changing morbidity patterns and the introduction of computerised systems. Recent figures indicate that 80% of all prescription items dispensed in primary care are through repeat prescriptions [11], with repeat prescribing increasing with the age of the patient [12, 13]. While there is general guidance for good practice in repeat prescribing within the NHS [14] several models exist for obtaining repeat prescriptions including patients submitting requests in person, by post, via email or the telephone, with GP practices often adopting a variety of methods [10]. There have been some attempts at providing an alternative model to the repeat prescription process in England. Introduced in 2005, repeat dispensing enables community pharmacists to dispense regular medicines to patients on each occasion a repeat is needed, without requiring another prescription from their GP. The GP can sign for up to 12 months of repeat prescription forms, lasting 28 days each time [15–17]. Despite some evidence that this provides a more flexible approach for patients with fewer trips to the GP practice [18] it also commits them to return to the same pharmacist every month giving rise to potential problems if a particular drug is out of stock [16, 19]. In reality, repeat dispensing schemes are relatively rare with the repeat prescription the most common approach in long term conditions [8].

Internationally, there has been considerable interest in the health outcomes implications of non-adherence to prescribed medication in chronic conditions [20], and costs associated with unused medications [21–24]. However, the preoccupation with the link between non-adherence and drug wastage has overshadowed exploration of patient experience around obtaining their prescription and the possible consequences for adherence. This paper reports on a study that investigated patient experience of receiving health care from long term conditions services that had “integrating activities” [25] such as pathways of care that cross hospital and community health care providers. A focus on patient and carer experience allows exploration of whole systems of care [26] and may also reveal issues that were previously hidden to service providers and researchers [27]. The aim of the paper is to present the key themes emerging from interviews with patients and carers and predominantly concerned medicine management.

The study was conducted between 2010–2012 and had built on an earlier mapping of the evidence [28] which found that services promoting integrated and coordinated care were relatively new, with no clear evidence on a number of outcomes including patient experience. Therefore, the main research question was ‘what is the impact on patient experience of long-term conditions services with integrating activities?’

This paper reports on the qualitative findings from patients and carers in phase two of the study.

Patients and carers did not talk in terms of “coordination” or “integration” of services. Rather, their focus was on what features of a service reduced the workload of living with a long term condition and made life simpler.

The aim of this study was to explore patient experience of long-term conditions services which had elements of integration and were aiming to provide a seamless service. Our interview guide (Table 3) allowed participants to raise any examples of where care felt fragmented. The results suggest that fragmentation manifested itself in patient experience as labour-intensive challenges in the management of their condition, such as accessing GP appointments, but most predominantly in managing their repeat prescription. Corbin & Strauss [36] describe trajectory work as the activities a person does to manage their chronic illness. In this study emblematic of “trajectory” work was the effort required to ensure prescribed medication was available in the home. It appeared that this work was increased if repeat prescriptions were required every month rather than a longer period. The majority of patients and carers interviewed found managing repeat prescriptions a time consuming task, causing disruption to life. Reasons for this included having to make several journeys per prescription including the initial request and subsequent collections. Lack of synchrony was reported with medications finishing at different times; this in turn increased the number of visits to the surgery.

For the relatively few patients’ who did not report any difficulties with their repeat prescriptions, their repeat prescription requests to the GP were linked directly to the pharmacy, from where patients’ could collect their medication, or it was delivered to their home address. Similarly, patients receiving services where the repeat prescription was organised on their behalf, such as the community matron service, did not report any issues arising from their repeat medication.

However, in reality many patients and carers found themselves significantly deviated from the clear route map for repeat prescriptions as presented in the Good Practice Guide to Quality Repeat Prescribing [14] (Figure 1), with their actual experience a more difficult route (Figure 2).

There is little previous research on patient experience of obtaining prescriptions. A review of the evidence around older people and medicine management highlighted a number of studies that suggested reasons for poor medication adherence in older people including; health beliefs, therapy related factors and some system and health care team related factors such as the packaging and labelling of medicines [37]. However, a national survey and interview study within England reported that family carers experienced difficulties in maintaining a continuous supply of medications for the person they cared for [38]. These difficulties included the increased burden of making repeated visits to the GP surgery to sort out any problems with the repeat prescription; however no link was made to the length of prescription. A report by AT Kearney commented on patient expectations of pharmacies [39]. A significant proportion of patients stated that pharmacy opening hours did not suit their lifestyle needs, and also that waiting times for prescriptions were too long [39]. Our findings suggest that many of the patients interviewed were dissatisfied with the length of their repeat prescription. Much literature exists about the cost, length and wastage of medicines. The National Health Service spends £8 billion a year on prescription drugs in primary care in England. Expenditure on primary care drugs has increased by 60 per cent over the last decade, and the number of items dispensed has increased by 55 per cent [8, 23]. It is estimated that up to £300 m is wasted (medicines dispensed but not consumed) in NHS primary and community care prescription drugs in England annually, and that £150 m of the medicines waste is avoidable [23]. The National Audit Office published a report in 2007 criticising the prescribing of doctors and levels of pharmaceutical waste [8], estimating that cost of waste varies from 1% to 10% of total spending on medicines [40, 41]. As a response to the rising cost of medicine waste, Primary Care Trusts, with the encouragement of the National Prescribing Centre, introduced initiatives to reduce the number of dosage units to a 28-day supply [8, 41, 42]. The effect of these initiatives is clear with a 2008 study indicating that the average length of a prescription was 40 days [40], whereas a recent study looking at trends in prescribing data from 1998 – 2009 in England for 11 medicines showed a significant drop in doses per prescription. However, this equated to 35 million more items being dispensed in 2009 compared to 1998. It is estimated that this cost the NHS an extra £150 m a year in dispensing fees [41].

There is evidence of patient organisations lobbying for changes to prescription length. The Patients Association argued that the majority of patients are unhappy with a 28-day supply of medicines; one reason for this is the rise in cost for the patient. Patients with long-term conditions need multiple prescriptions, paying prescription charges more often [42]. In an open letter to the Department of Health [43], the Addison’s Disease Support Group stated that reducing prescriptions to 28 days is disempowering for patients, causing anxiety when running low, particularly over weekends. It also limits the freedom to travel.

There is limited previous research exploring the effect of prescription length. A UK survey [44] looking at trends in the prescribing of thyroid hormone medication showed that prescription duration over the last 10 years has reduced from 60 to 45 days on average. The survey showed great dissatisfaction with the 28-day prescription (59% dissatisfied overall, 13% satisfied). Fewer than half of those given a 28-day prescription had asked their GP for a greater supply. Of concern is that 17% admitted to missed medication, 6% having gone without tablets on more than one occasion owing to lack of dispensed medication [44]. However, some patients thought obtaining repeat prescriptions would be easier to remember if all the medicines were given for 28 days, and would improve synchrony. It allows for production of a 28-day “blister pack” which makes it easier for patients to remember medication [44].

The National Prescribing Centre in 2008 released further information regarding the 28-day policy, advising that longer prescription periods may be suitable for those patients who suffer with long-term conditions and can safely manage their medication [18]. Despite this advice, prescribers routinely write prescriptions for 28 days [18, 41, 44]. A recent report commissioned by the Department of Health [11] made no explicit mention of the impact of prescription length, but focused on the link between improved repeat prescribing, improved health outcomes and reduced dispensing of medicines that were no longer required. However, while the report recommended improved communication with patients about prescribing decisions, it did not identify the need for improving mechanisms for feedback from patients about their experiences of repeat prescription services.

There are several advantages and disadvantages to a 28-day prescribing policy. However there is very little previous evidence evaluating how this change in prescribing behaviour has impacted upon patients. Up to now, patient experience has played little part in the wastage versus prescription cost debate, but with an increasing focus on improving quality of care delivered, and the vast changes occurring within the NHS, it is vital to assess all components of quality [45]. Evaluating the needs and preferences of service users is an important aspect in reviewing the quality of service delivered [46, 47]. Patient satisfaction serves as an essential determinant of viability and sustainability of health care services [48], and stockpiling of medications by patients may be a strategy to prevent facing the rigours of organising a monthly prescription when situations are particularly difficult. While it is recommended that patient satisfaction should be taken into account when designing a repeat prescription service [14], the effect of flaws within the system upon patient adherence has not been previously identified. Aspects of the current system within England are unlikely to change in the near future as the current reimbursement schemes for community pharmacies in England (fee per dispensed item) makes it unlikely that lengthening repeat prescriptions would be encouraged by pharmacists. Nevertheless, it has been estimated that even moving 50% of prescriptions from 28 days to 3 months in the 4 main chronic diseases would reduce items dispensed by over 40 million, significantly reducing system costs [39].

Pharmacies in England are undergoing further change, as the Electronic Prescription Service release 2 (EPS2) is due to be introduced [49]. This system will enable prescribers to digitally sign and electronically transfer the prescription to a national database, ‘The Spine’. The prescriptions can then be downloaded and dispensed by a pharmacy chosen by the patient. It is hoped that this will optimise pharmacy processes, and improve organization; for example being able to download prescriptions at the start of business, and dispense prior to GP practices opening. This would allow a smooth flow of dispensing throughout the day [49]. Evaluation of how this will impact on the patient experience will be of interest once implemented.

The study we report has limitations in terms of being confined to patients in just two primary care trusts. We were also dependent on participants being recruited through the actual services and have no information about patients and carers who did not wish to take part in the study. The focus of the study was not specifically on repeat prescriptions and in the first phase of the study we had not collected data from health professionals on their perspective of repeat prescriptions. However, as this finding emerged inductively from patient and carer interviews we are confident of the validity of our findings, and that interviews were conducted until data saturation had occurred with no new themes arising [50].

While this study is limited in terms of the number of research sites, it highlights a previously under-reported area in an increasingly significant area of health spending. With an ageing population and associated morbidities, a system change in repeat prescribing which would not only reduce costs but also improve patient experience, appears overdue. There seems to be a clear case for increasing routine repeat prescriptions to a longer duration in terms of reducing costs and improving patient satisfaction, however further research is required to explore how this would affect patient and carer burden, and health outcomes.