Bradley (2005) reinforced by the Association of Ambulance Chief Executives (2011) clearly state that only 10 % of patients calling 999 actually have a life threatening emergency, with the majority having problems which are psychological and sociological in origin. These reports further removed the already changing perception and labels of paramedicine as solely an emergency life threatening service, and highlighted that most unscheduled care can have an element of planning, for which the thoughts, experiences and opinions of those who use them are required.
The era of the patient as the passive recipient of care has changed and is being replaced by a partnership approach in which patients are empowered through information to contribute ideas that can help in their treatment and care (Boran, 2009). This article explores the concept that paramedic practitioner intransigence is no longer seen as conducive to fully effective healthcare, and investigates what is actually meant by the terms patient, quality and user involvement. It aims to highlight how these concepts can forge a shift in power from health care practioner (HCP) to individual, as well as increasing the use of user involvement methods portrayed as being important in the ongoing quest to improve emergency and unscheduled care services (Taylor and Benger, 2004).
Patient centred care
The term ‘patient’ is one that has traditionally refected a biomedical provision of care that focused on an unequal relationship with an active practitioner and a passive patient; perhaps best depicted as ‘doctor knows best’, or the paramedic working ‘on’ the patient, as opposed to ‘with’ the patient. Henderson (2006) suggests that this biomedical approach to illness became fully established in the nineteenth century with the advent of new diagnostic techniques, before which doctors were heavily reliant on patients’ experience and stories of illness to reach a diagnosis. Gillespie et al (2002) argues that although this biomedical model remains dominant it is increasingly open to challenge, as seen most recently by Brady (2012) who argues that paramedics need to distance themselves from a biomedical approach and view their patients or service-users as whole beings with social, psychological as well as physical needs.
The World Health Organisation (WHO) (1946) defines health as ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infrmity’, highlighting the complexity of an individual and the need to consider their needs holistically. Price (2006) elaborates upon this biopsychosocial portrayal, introducing the theory of person–centred care (PCC) and creating a view of patients much more as consumers and users of health care services, often if not always this definition includes family, friends and carers. Describing PCC as a powerful concept that takes into account holistic needs, Price explains how it developed in response to the need for a more patient-sensitive healthcare service; one that takes into account aspirations, achievements, desires, goals and attempts to find the person behind the patient.
The principles of person–centred care (as seen in table one) include listening, empowering and encouraging their autonomy, and can be used to evaluate the quality of care and enable practice development (McCormack and McCance, 2010). Pope (2012) explains that by engaging with individuals, working impartially with their beliefs and values, person–centred outcomes such as improved health care involvement, satisfaction and decision making can be achieved.
By coming to terms with the paramedic professions actual workload, and redefining the perhaps limited definition paramedics currently have of what a patient actually is, age old views can be expanded to view them more as consumers, customers and service users; therefore encompassing all their potential needs, and even, perhaps expanding the expertise of the paramedic profession. Much in the same way as customers are so often asked in industry and commerce, we can use their experiences and involve them in the design, evaluation and improvement of emergency and unscheduled care services. This inclusion and involvement improves greater understanding of user requirements, increases communication and partnership, increases the efficiency of services and importantly provides better evaluation of the quality of care (National Treatment Agency, 2002).
Quality
The word quality features heavily in the recently released National Health Service (NHS) constitution (2010), which establishes the aims, principles and responsibilities of today’s NHS. Depicted by Walker et al (2003) as both an elusive concept to explain as well as to promote, quality is defined in Bailliere’s Nursing Dictionary (2009) as a ‘degree or standard of excellence’, however says nothing on who or what decides what the definition excellence actually is.
Variables such as religion, race, culture, age and sexual orientation all alter what is a complex and multi dimensional concept. Quality can mean many things to many people, to some people quality may come in the form of warm welcoming services where to another, priorities could be placed on waiting times and availability of those services. The importance lies in working with our service-users definition of quality, appreciating the complexity of multiple situations, opinions and experiences and finding methods to collect and use them in clinical justification and service improvement.
Service-user Involvement
Schulte et al (2007) explains that in the UK, user involvement has now been identified as an important element in the development of effective high–quality treatment services. Davies (2009), suggests that engaging patients and the public in health services can occur at a number of different levels:
We will now explore these three different levels through, consultation, patient expertise and the use of narratives.
Consultation
Health service user consultation as a legislative requirement has been emphasised as early as the community care act (NHS, 1990) and as recently as the NHS Constitution for England (NHS, 2010). Described as a complex and heavily politicised task (Beresford and Croft, 2010) it still remains a key component of government legislation and policy today, and provides those most likely to use services with the respect and inclusion they desire, coupled with providing them with a voice in decisions affecting their treatment and lives (Walker et al, 2003).
Consultation is key to the empowerment of health and social care users and forms part of the principles of PCC. Defined by Aujoula (2007) as the emphasis on the rights and abilities of individuals and communities, empowerment allows people to play a central role in designing, monitoring and evaluating the quality and effectiveness of their services. The NHS state that there is a strong and widely held view that involving patients in decisions about healthcare at both personal and strategic levels is fundamentally important to the improvement of health and social care services, as well as being a basic right. The consultation process before and after treatment leads to a better understand of what individuals and collectives want from health and social care services (DH, 2006) and can involve many people in many ways at various stages.
Perhaps the best example of where planned and emergency services overlap is the increasing consolidation and provision of specialist services such as paediatric, minor injury, stroke and cardiac care. Communities wish to have a say in the location of such services however this is usually weighed against where specialist treatment and expertise are located, highlighting that even though consultation is deemed to be both a desirable and imperative goal of health policy it does not come without its challenges, which we continue to explore.
Challenges to consultation
Social inclusion and performance management
Consultation, by its very nature, aims to give a voice to as many people as possible who are likely to be affected by changes in policy or provision of care. Given the number of changes currently occurring in emergency and unscheduled care, the possible geographical areas, transportation difficulties, accessibility problems and language barriers, it is unsurprising that there are various challenges to organising fully effective socially inclusive consultation processes. Social inclusion is integral to consultation and refers to the need to involve everyone from every echelon of society but more so those who are most vulnerable, less well represented, and who’s voices often do not get heard, copmmonly known as ‘hard to reach’ patients; a term with a contested and ambiguous definition (Flanagan and Hancock, 2010).
Those of lower socioeconomic standing, for example, historically, have far lower educational attainment than more affluent communities (Kiernan and Mensah, 2011), and are far more likely to use health and social care services (Astin, 2006) as a result of poor quality housing, less social interaction and unhealthy diets. Therefore these individuals who are more likely to use services, who are often only able to travel within the limitations of public transport routes, and perhaps may be less confident when articulate their needs, desires and requirements, become ‘hard to reach’; presenting a challenge to how, where, when and with whom consultation can best take place in order to be fully socially inclusive. Similar challenges arise with those who are hospitalised, under mental health section orders, incarcerated, and those with disabilities and additional physical needs; all against the backdrop that the subject that they are being consulted upon often evokes unwelcome emotive memories of distressing and upsetting experiences of treatment, loss and grief.
Inclusion of these members of society can often be achieved by positive or selective discrimination; described by Dwyer (2010) as a socially acceptable means of selecting services to discriminate positively to those in greatest need. These processes work to give a voice specifically and preferentially to those who may be ‘hard to reach’ and more likely to use services and thus benefit from consultation. However, positive discrimination which is often seen as one of the solutions to social inclusion often comes at the cost of those individuals whom weren’t consulted and best exemplifies how consultation is not a ‘one size fits all’ process (Beresford and Croft, 2010), often riddled with conflict (Leckey et al, 2008).
Performance management is something that most paramedics and emergency nurses will be familiar with and is often subject to negative media attention within the emergency and unscheduled care arena. Great emphasis has been placed on the measurement of performance, placing onus on organisations, departments, practitioners and politicians to improve the performance and quality of services.
A popular example of such performance management with paramedicine is the measurement of response times. The DH (DH, 2011) Ambulance Quality Indicators require all life threatening calls to be responded to within eight minutes; however the system by which response times are measured does not take into consideration, topography, geography, demography, time of day, weather conditions or vehicle capability. It is then unsurprising that Price’s (2006) research concluded response time recording was an inadequate method of performance management, vulnerable to ‘fddling’, which often had detrimental effects on both patients and paramedic’s health and wellbeing. Bevan and Hamblin (2009) rather damning report on response time measurements highlights that often the most important aspects of performance cannot be measured, questioning whether they have any discernible effect. While it is important to get to the small number of users who require rapid life saving treatment within the shortest amount of time, by themselves response time statistics provide an incomplete picture of the level of quality and perhaps cause harmful effects to staff morale.
Organisations are often heavily fined if they do not meet measurement targets and examples like this further support a shift towards measuring performance in less managerialist ways that run organisations in-line with business principles and concerns (Harris and White, 2009). Until organisations are not fined by governments for missing such targets that in this case are measured in a completely flawed manner concerned only with a misguided view of productivity, the involvement of service users will arguably take a lesser place in consultation of service performance.
The government is improving on its commitment to creating health and social care services designed around customer needs and experiences, where user involvement such as consultation is part of everyday practice and where people’s voices lead to action (Bradshaw, 2008); however this does not come without a complex plethora of social, organisational and political complexities all of which present a formidable challenge to consultation and the use of service–user expertise.
The expert patient
The term ‘expert’ is defined by the Oxford English Dictionary (2012) as ‘a person who is very knowledgeable about or skilful in a particular area’, and has largely been attributed to those doctors, nurses and paramedics providing care to those in need. However, according to Fox et al (2005), the concept of the ‘expert patient’ has emerged recently within UK health policy, and links patient experience to ideas of empowerment, better quality of life, self esteem and user led services. Fox et al (2005) continue to explain that moves to integrate and recognise the expertise patients have about their own conditions will forge transformations in the practitioner–patient relationship, from a ‘professional–led’ interaction to a ‘practitioner patient partnership’, in which expert patients ensure that treatments are appropriate to their individual needs.
Born from the self care agenda (Wilson et al, 2006), expert patients according to Shaw and Baker (2004) are those who can manage their own illnesses and conditions by developing knowledge relevant to maintaining health and countering illness, resulting in them having greater control over decisions affecting their lives.
While it is important to recognise the expertise of those patients with chronic conditions who over time get to know their illness and ways in which to improve exacerbations, it is equally important to recognise the potential expertise of those patients who rarely or only once use emergency and unscheduled care services. Paramedics potentially recognise the expertise of these patients, friends and carers every day perhaps without realising it. Questions such as; ‘what medical problems do you have?’, ‘does your mother usually walk with a limp?’, ‘does this feel like anything you’ve had before?’, ‘does your client always lean to the left like that?’, all recognise the basic expertise patients, families, friends and carers have in their health and that of their clients and loved ones.
There is a growing recognition in healthcare of the expertise patients bring to the management of their own illness or condition (Cavanagh and McLafferty, 2007) as a method of diagnosis and treatment plan. However, practioners should also consider expert patients to be a valuable and somewhat underestimated educational resource for themselves, the medical profession as whole, and other patients (Swift and Dieppe, 2005); a view supported by the use of expert patients on training and educational courses for specific pathologies, and a resource which can be used to improve services.
The term expert patient encompasses the entire concept of appreciating the users experience and expanding the confines of traditional evidence bases to place those at the heart of treatment at the heart of quality monitoring and improvement. Paramedics and other practioners perhaps inadvertently already appreciate user experience and expertise as part of everyday medical history taking, which involves combining the pathological description of disease with the patient’s subjective experience of illness, to identify signs and symptoms but also the individual’s experience and definition of the situation (Fawcett and Rhynas, 2012).
Although Gillespie et al (2002) argues that rigid biomedical models of care that perhaps do not fully recognise the users experience are increasingly being challenged, there are never the less some barriers to the acceptance of expert patients within paramedicine.
Challenges to acceptance of patient expertise
One possible challenge may lie in the public perception of paramedicine. Up until only recently, typically seen only as a transportation service, the education underpinning the practice of paramedics continues to grow and develop (Brady and Haddow, 2011). Users may not realise this and feel they are the only expert in their treatment when faced with merely an ‘ambulance driver’, perhaps inadvertently insulting the intelligence, experience, training and educational achievements of the practitioner. This challenge can only be overcome by increasing public knowledge of paramedics true workload, training and education; as well as by consulting specific user groups such as the partnership formed between the pituitary gland foundation, who share their expertise with our profession.
Another challenge lies in the research findings of Wilson et al (2006), who’s study highlighted that nurses frequently articulated their discomfort with expert patients, portraying how uncomfortable they were with the idea of being challenged by knowledgeable patients. The study showed that while doctors and physiotherapists for example describe diagnosis and treatment as their expertise, general nurses often found it much more difficult to define their specific area of knowledge. This led them to view expert patients as both challenging and threatening; feelings one argues could also be felt by paramedics who share a similar level of professional ambiguity.
This professional ambiguity comes in part from the historical involvement of other professions, dictating the scope of practice and expertise allowed and afforded to the paramedic profession (Brady and Haddow, 2011), hence making is unsurprising that practioners may see expert patients as a threat and a further loss of power in which a patient grasping print-outs from the internet entails a time-consuming negotiation of illness management (Shaw and Baker, 2004).
What must be recognised however is that service-users are just as susceptible and subject to a loss of power, control and expertise through their calling an ambulance or admission into hospital. This leads the author to suggest that, although recommending that practioners relinquish an approach of medical dominance, the importance of partnership still cannot be over emphasised. Service-users only become so through a need of the expertise of practioners and medical interventions leading to what should be a collaborative symbiotic relationship between patient and professional; one that Fox et al (2005) suggest can be fostered through the recognition and appreciation of user experiences that aim to develop expertise that empowers rather than constrains.
The ‘doctor knows best’ approach to emergency and unscheduled care may in part already be diminishing through paramedics appreciation of user expertise during history taking; it may also be benefcial to imagine how passive doctors, nurses or paramedics actually are when they themselves are hospitalised, and transfer this notion to everyday users. The partnerships between paramedics and service-users is however often very short when compared to other professions hence the need to find a method by which their full journey can be obtained is important, and is often done through the use of patient narratives.
Patient narratives
There has been a growing interest in the use of patient narratives for many aspects of health and social care, for recovery from mental health problems, coming to terms with loss, as-well-as quality improvement. Fivush and Haden (2003) explain that human beings are natural story tellers of their experiences, explaining what has happened, how they interpreted situations and why they were good or bad; providing what the author argues to be a natural source of performance management and quality control. Price (2011) tells us that narratives, deriving from the Latin ‘narrare’ meaning to recount, and the adjective ‘gnarus’ meaning to perform skilfully, are not necessarily well understood or always well respected within health care; suggesting that this may be due to practitioners viewing them as inaccurate, exaggerated opinionated accounts that hold no greater authority than that of any others. However this ‘opinion’ that is perhaps viewed by practitioners with some scepticism is what lies at the heart of person and individual centred care, and the potential benefits already alluded to by the National Treatment Agency (2002); highlighting a need to enhance patient practitioner engagement in obtaining narratives, their meaning and ways in which they can be used to improve quality (Ridge, 2012).
This concept of using individual’s experience as evidence from which to learn, progress and improve quality is certainly not a new one within healthcare and is fundamentally a form or refection. The importance of refection has in recent decades been emphasised by its inclusion in higher education courses for paramedics and nurses, as well as being an example of evidence of continual professional development for registering bodies such as the health professions and nursing midwifery councils. Narratives are in essence a reflective account, and as such one argues should also be afforded similar emphasis and acknowledgement. Although often a time consuming arduous process, refection contributes to learning by exposing embedded knowledge and by identifying areas of everyday practice or life that require development and improvement (Hilliard, 2006); in this case highlighted to us by those whom use our services. Much like refection, patients’ narratives are not necessarily true or false, good or bad, but are rather a summary of perceptions that they have arrived at (Price, 2011). They can often be illuminating for both service-users in making sense of their experience and situation, and for practitioners who through narratives find out how they contribute to an individuals’ experience and situation (Frost and Cliff, 2004). Both one would suggest can only really begin to happen after leaving an emergency or unscheduled care environment, further highlighting the need to enhance engagement in order to obtain them.
Patient narratives can be gathered in various different ways; within the health environment, on a patients return or within the community, some methods of which include:
Challenges to the use of narratives
Challenges to collecting narratives are similar to that of consultation. Social inclusion, choice of methodology for those with additional physical and psychological needs are often complicated to overcome, coupled with first making the decision on who’s experiences should be collected at all. With economic constraint worsening within public health care, pragmatically, it is impossible both in terms of time and financing to collect every service users, families, friends and carers narrative, which somewhat devalues concepts of person and individual centred care; upon which the appreciation of user experience relies.
Although obtaining, listening and responding to patient narratives is important, Gustafsson et al (2008) explain that is can also have negative effects on health professionals, often leading to burnout resulting from hearing stories of abuse and negative treatment that the public associate with the whole profession. These views may also cause practitioners to assume that those providing narratives of their experience will do so only to bring litigation against them, of which there is little evidence (Wilson, 2006), as although UK law is based upon the notion of active professional and passive patient, it is possible to interpret it through the new professional–patient relationship of an active partnership (Martin, 2004).
The use of narratives is fast growing in areas of health and social care that have historically relied on quantitative methods of quality assurance and performance management, such as emergency and unscheduled care. They have their benefits and limitations as explained above but fundamentally allow practitioners and providers the ability to understand service-users views of quality through their definition of a situation. If quality is to be at the heart of emergency and unscheduled care, it must be understood from the patient perspective (DH, 2008) for it to have real implications for ways in which professionals practice.
Implications for emergency and unscheduled care
While the implications for emergency and unscheduled care practitioners are perhaps not immediate, the author calls for professionals to begin to be aware, open minded, considerate and appreciative that their service-users knowledge and experience is fast becoming recognised as an additional evidence base that underpins and supports clinical decision making; if they did not already beforehand. In reading this article new concepts and definitions of quality, patient and journey have been introduced in an aim to highlight the need to share expertise and actively encourage the involvement of those for whom we care. User involvement is advertised both as an ethical and legislative responsibility, however the author suggests it should be seen as a professional obligation. The health professions council (HPC) with whom paramedics are registered, state in their standards of conduct performance and ethics that registrants:
‘Must always maintain proper and effective communications with patients, clients, users, carers and professionals’
The Nursing Midwifery Council (NMC) with whom nurses are registered stipulates that registrants have a responsibility to:
‘Collaborate with those in your care’
‘Listen to the people in your care and respond to their concerns and preferences’
‘Recognise and respect the contribution that people make to their own care and wellbeing’
The General Medical Council (GMC) with whom doctors are registered state that as registrants you must:
‘…encourage patients who have knowledge about their condition to use this when they are making decisions about their care. Listen to patients, ask for and respect their views about their health, and respond to their concerns and preferences’
Strategic leads within ambulance services and health trusts have been familiar with user involvement as part of their requirements for some years now; one questions how familiar operational practitioners are aware of the concepts of user involvement. Empowerment through user involvement clearly forms an integral part of these professionally stipulated requirements to ‘… communicate, listen to, encourage involvement and recognise contributions’, therefore changing notions that have been growing in recent decades, from merely being encouraged in practice, to being viewed as a mandatory part of professional registration.
Such change in ways practitioners view their responsibilities towards user involvement according to Price (2004) involves discomfort and difficulty raised by doubts surrounding the wisdom of particular strategies. However, if practitioners are able to appreciate the rights service-users and they themselves as users also have, encourage the use of their patient expertise, and provide information on how they can provide feedback, not only will professional requirements be fulfilled but partnerships will be formed and continue to grow stronger. User involvement is a process littered with often emotive and complicated difficulties ranging from ethical to socioeconomic and physical barriers, and it is recognised that it is simply impossible to please all of the people all of the time (Taylor and Benger, 2004); however, if within our own profession we can begin to be more aware of methods of measuring satisfaction, performance, quality and overall patient experience, as exemplified in this article, we can in part actually begin to respond to findings and implement improvements that are truly patient–centred.
Conclusions
This article has introduced concepts that have been previously seen in other areas of health and social care longer than that of emergency and unscheduled care, with the aim of highlighting their importance to the changing profession of paramedicine. In an article of such length a full critique of the full range of user involvement methods is not possible, however this article merely aims to make readers aware of process that are happening perhaps behind the scenes within their profession, or by practitioners themselves without notice; and advertise their importance and potential use as evidence for clinical justification and quality improvement. Emergency and unscheduled care is evolving dramatically in the face of financial, technological, scientific and demographic pressures and changes, much like the evidence bases that underpin it. Registered practitioners are required by their regulators to be aware of changes that could affect the way they practice and care for those in need; the concepts alluded to in the article exemplify such changes. By expanding our knowledge from outdated theories of doctor, nurse or paramedic knows best, we can modernise the care we provide in a holistic, person–orientated way; building mutual partnerships and relationships with those who use our services, fundamentally shaping the way in which healthcare workers learn, improve and provide emergency and unscheduled care.