The word ‘consumerism’ is frequently used in the context of spending on cars, clothing, shoes and gadgets, which are not always a necessity, but instead, part of a socio-cultural trend. The UK patient does not usually consider themselves a consumer of healthcare, unlike in the US, where healthcare is considered a commodity or service which can be bought and sold. Healthcare consumerism in the US was strengthened by the No Surprises Act (2021), which was designed to protect patients from unexpected medical and other costs at out-of-network hospitals or other providers. The position of patients as consumers or customers of the UK healthcare services is less clear, partly because there is no direct monetary relationship between the patient and the service provider, with all care being free at the point of delivery and costs funded through general taxation. As a consequence, satisfaction surveys of UK healthcare are frequently replete with high satisfaction ratings, although the services being rated are not the best (Fitzpatrick and Hopkins, 1983).
Fitzpatrick and Hopkins’ (1983) early research cast doubt upon the validity of satisfaction surveys as it was unclear what criteria (clinical outcome, technical competence, practitioner manner, service accessibility, etc) the respondent is using and whether the individual is able to make a sound judgement, except on the basis of a generalised disposition. Fitzpatrick (1991) further developed his argument by suggesting that the measurement of satisfaction as a global concept may not differentiate between its different dimensions, namely: humaneness; cost; informativeness; facilities; overall quality; outcome; competence; continuity; bureaucracy; access; and attention to psychosocial problems. Jenkinson et al (2002) explored aspects of in-patient care as most likely influencing satisfaction and found that the major determinants of satisfaction were: physical comfort; emotional support; and respect for patient preferences using multiple linear regression (n=2249; 65% response rate). They noted that, while many respondents were positive about their care, the 55% who rated their in-patient experience as ‘excellent’ also indicated problems on 10% of the issues measured on the Picker questionnaire. As a result, the researchers concluded that patient satisfaction scores were of limited value. They recommended detailed questions about specific aspects of patients’ experiences in different settings.
Building upon this work, the Picker Institute runs a range of patient and staff surveys on behalf of NHS England and NHS Improvement and the Care Quality Comission (CQC) (2022), including the recent GP Patient Survey (2022) (n=719 137; 29.1% response rate), which reported a significant decline in perceptions of experiences of general practice and its quality, especially in relation to access.
Illiffe and Manthorpe (2021) have described the NHS as offering ‘managed medical consumerism’ through permitting reasonable choices regarding treatment options so that services should be geared towards the interests of users rather than the convenience of healthcare professionals. They argued that New Labour introduced this form of medical consumerism to challenge and constrain professional power, while opening the NHS to new ways of working, neither of which were achieved. They contended that the NHS manages to minimise consumerist challenges to professional power, in part, by packaging everything in terms such as ‘partnerships’ and ‘healthy’. The COVID-19 pandemic has demonstrated that most people do not challenge medical authority and it appears that patient groups often find themselves managed as ‘useful challengers’.
Complaints by patients and families are an indicator of dissatisfaction and when people feel that they have not been heard. Patients Association (2015) analysed the calls received by their helpline and revealed the gap between the NHS constitution and the experiences of some patients, in terms of provision of care and standards of care and compassion, and information and communication. But people were fearful of raising concerns or making a complaint about their care experience in case of recriminations, despite being motivated to prevent others from having similar negative experiences. van Dael et al (2022) reported that the NHS in England receives more than 200 000 formal complaints each year and failure to respond adequately is a feature of the various NHS inquiries, including the most recent example that related to East Kent’s neonatal and maternity services (UK Government, 2022), which demonstrated how managers and professionals did not listen to the users of their services. The extent of listening to care recipients is a focus of CQC reviews in line with Principle 4 of the NHS Constitution (the patient will be at the heart of everything the NHS does) (NHS England, 2021) and they are particularly alert to whistle blowers, as is evident by the downgrading of several services reviews. Therefore, NHS Trusts are required to formally investigate and collect data from complaints to improve learning.
In the UK, ‘…there is no direct monetary relationship between the patient and the service provider, with all care being free at the point of delivery…As a consequence, satisfaction surveys of UK healthcare are frequently replete with high satisfaction ratings, although the services being rated are not the best.’
van Dael et al (2022) investigated why national policy intentions are not realised at a local level through a case study conducted in a large, acute, multi-site NHS Trust, which offers a range of community services and found four areas of practice where national policies and regulation can undermine ‘learning’ and quality improvement. The four areas were: confusing routes for raising formal complaints; investigative procedures focusing upon testing the ‘validity’ of complaints; pointless data collection systems based on meaningless coding; and adverse incentives created by performance targets prioritising the procedure and response timelines, which encouraged workarounds rather than understanding all aspects of the complaint. They argued that user involvement and listening are key to understanding the needs and experiences of patients. In other words, there is no substitute for the user voice if we wish to understand the needs and experiences of patients and the practices that may cause care dissatisfaction and undermine healthcare safety.
National Institute for Health and Care Excellence (2021) recommended shared decision-making about care, treatment and desired outcomes, as well as arguing that the users’ voice should permeate every element of a provider. NICE was clear that individual users should be involved in all decisions regarding their treatment and care, recognising past decisions, previous discussions, values and preferences, ensuring information continuity along the care journey. The guidance also applied to remote consultations and discussions, which are increasingly part of today’s NHS offering. National Voices (2021) explored the impact of remote service models upon users and found that people were digitally excluded for a wide range of reasons. They found that many digitally-excluded users experienced a combination of access, health and social barriers, which has prevented the successful use of remote healthcare and led to some needing to be provided with a suitable alternative. This report also found that remote models did not always provide a positive experience or high quality of care.
It is not only users who may struggle with remote services. Carers have also reported concerns about privacy relating to both themselves and those cared for, as well as challenges connecting with health and social care services (National Voices, 2022). Carers may not be able to have a private conversation and the person being cared for may prefer not to disclose things about their health or wellbeing in front of their carer. The digitally excluded may find that they are reliant upon a carer or family member to overcome access barriers, but at the cost of privacy. Additionally contacting services can be time consuming (unanswered phone calls, etc), especially when combined with navigating the health and care system as both a user and a carer. It is hard to know whether healthcare professionals recognise the need to find strategies to enable full disclosure and uninhibited conversations if they wish meaningful shared decision-making to take place through remote discussions.
A survey of 1416 healthcare professionals following the release of the NICE (2021) guidance found most respondents reported practising shared decision-making (Patients Association, 2022). More nurses than doctors in the survey were supportive of shared decision-making, which perhaps reflects that the nurses received more training in both their initial and post-qualification education and were open to learning more (Patients Association, 2022). But reporting that shared decision-making is included within clinical practice may not mean that the client’s perspective is fully heard, respected and incorporated in all clinical and care decisions, as is evident from the increasing number of services being rated as ‘requiring improvement’ or ‘inadequate’, with some being issued with enforcement action by the CQC. Community nursing services can be the exception and a model for other services in their delivery of personalised and high quality care, characterised by respect, compassion and sound clinical practice.
A recent telephone survey (CQC, 2022) of 4013 people aged 65 years and over, living in England, found that the majority (78%) of respondents who had used services in the last 6 months rated them as good, with only 11% rating them as poor. While 52% reported that all their needs had been met, 29% reported that their needs had been met to some extent and 14% reported that their needs had not been met at all. In terms of care experience, 80% of the respondents reported that they had been involved as much as they wanted to be in decisions about their care and treatment and 82% felt that they had been listened to when discussing their needs. The vast majority (90%) of the respondents reported that they had been treated fairly regarding the care and support for their health and wellbeing and 84% agreed that they have been treated as a person rather than a condition. Up to 22% of the respondents reported being on a health service waiting list (e.g. diagnostic tests, mental health services, consultant appointments, an operation or a therapeutic service such as physiotherapy), of which 53% felt well supported by health and social care services, while 37% did not share this sentiment. This suggests that better communication is needed when people are on waiting lists, which is an increasingly likely experience for many patients. While most of the respondents who had used health or social care services over the last 6 months reported that it was easy to get help from close family members (86%), friends or neighbours (80%) if they needed it, the more vulnerable (aged 75 years or older; disabled; on a waiting list; or getting worse while on a waiting list) reported more difficulty in getting such help, which may exacerbate health inequalities. Although there are a variety of caveats about the potential sample bias, the findings of this survey provide some reassurance that most people are receiving good care and support, that they are being heard as they would wish. But community nurses, whose clients are often the more vulnerable, may need to compensate where other services do not meet expectations.