Article Text
Abstract
The UK’s 2014 Immigration Act aimed to create a ‘Hostile Environment’ for migrants to the UK. One aspect of this was the restriction of access to secondary care for overseas visitors to the UK, although it remains the case that everybody living in the UK has the legal right to access primary care. In this paper, we argue that the effects of this policy extend beyond secondary care, including preventing eligible people from registering with a General Practice (GP), although as an unintended consequence. This problem arises from misinterpretation of policy wording, misleading GP websites and gatekeeping behaviour from front-line staff, even though there are no grounds in the current guidelines or law to support this. Free access to primary healthcare among refugees and asylum seekers living in deprived populations is particularly important in protecting patient health, given the burden of ill-health in this population and the multiple barriers to accessing early intervention they face. The medical profession has a duty to communicate their rights to this patient group—their legal entitlement to access free healthcare, and the vital importance of doing so.
- health care for specific diseases/groups
- policy guidelines/Inst review boards/review cttes
- primary care
- minorities
- right to healthcare
Statistics from Altmetric.com
- health care for specific diseases/groups
- policy guidelines/Inst review boards/review cttes
- primary care
- minorities
- right to healthcare
Introduction
Every UK citizen and resident has a right to access free primary healthcare. In England and Wales, this right arose from the National Health Service (NHS) Act of 1946 (Section 33(i)) but, as we explore in this article, there is increasing evidence that confusion among both patients and health practitioners is beginning to erode this right. It is a concern that is not unique to this country. For example, in a recent study of Medicaid uptake in USA, confusion over the right to health insurance led to substantial reductions in coverage.1
In this UK-based example, we first analyse the regulatory changes made to non-UK citizen access to care as a result of the UK’s 2014 Immigration Act and the accompanying ‘hostile environment’ policy. Second, we review the political science literature in order to demonstrate how these regulations may have had unintended consequences on GPs’ response to their professional ethics. We then review evidence gathered from GP websites and Doctors of the World (DOTW) about the effect such unintended consequences have had on the way in which these regulations have been interpreted and their implications for access. Finally, we examine the ethical position of GPs and apply lessons from the development of informed consent ethics to consider solutions in moving forward.
A ‘Hostile Environment’
The 2014 Immigration Act sought to limit the factors that ‘draw illegal immigrants to the United Kingdom’.2 Following its introduction, the Home Secretary at the time told the BBC: ‘What we don’t want is a situation where people think that they can come here and overstay because they’re able to access everything they need’.3 The explicit intention was to be ‘tougher on those with no right to be here’ and create a ‘hostile environment’ for unlicensed migrants in the UK.4
Current law and guidelines
Under sections 38 and 39 of the 2014 Immigration Act, a surcharge was introduced ‘for certain categories of temporary migrant’ on applying for entry clearance to the UK.5 Amendments to the Act, updated in 2018, meant that all those seeking to stay in the UK for more than 6 months were required to pay a healthcare surcharge of £400 per year.6
Also under the amendments, residents with ‘indefinite leave to remain’ would be charged for secondary care services outside urgent accident and emergency care.7 The majority of migrants were required to pay additional surcharges of £1000 alongside visa fees and obtain a Biometric Residence Permit from their post office within 2 weeks of arrival, which would be preregistered with the NHS.8
In 2015 the Department of Health introduced the ‘Migrant and Visitor NHS Cost Recovery Programme’, giving NHS staff responsibility to ask for proof of identity and immigration status before providing care.9 The same year, NHS Counter Fraud Service (CFS) issued guidance to GP practices on patient registration fraud, advising ‘It is important to ask all new patients (whether registering permanently or temporarily) to provide identification on registering’ and ‘a practice can, if it wishes, ask for proof of identification and other documents’.10 This was potentially misleading because, although a practice may ask to see identification, the inability to present identification is not a reasonable ground for a practice to deny registration despite the phrasing of the NHS CFS’s advice. The law does not currently preclude anyone in England from free access to primary healthcare.
In 2015 and 2017, NHS England issued guidance reiterating the universal entitlement to primary care, free of charge, regardless of nationality or immigration status.11 12 This guidance has been welcomed by the authority on GP registration in England13 and restated in guidance from the British Medical Association14 and the Care Quality Commission:
‘No documentation should be required in order to register with a GP. Overseas visitors have no legal obligation to provide proof of identity or immigration status; however, asylum seekers may be able to provide an ‘application registration card’ provided by Immigration Services’.15
The guidelines accord every resident the right to access primary care but, as will be seen, GP practices often fail to ensure this right.
Unanticipated consequences
In his original discussion of the potential for social legislation to have ‘unintended consequences’ Merton (1936) concentrated on the role played by those who initiate legislation. Writers in the later public policy tradition saw the process as a much more complex and continuous one. Policy came to be seen as continuous interaction between politics, many actors’ perceptions of ‘the problem’ and the power and resources these various actors possessed.16 17 It was also affected by the degree of political conflict and ambiguity inherent in the policy.
However, Merton’s original formulation does provide a useful framework for this case study examining the impact of this legislation on general practice. Merton distinguished four reasons why outcomes may differ from those that were anticipated by the originators of ‘social action’18 (pp 900–3)
The state of knowledge about cause and effect within societies is limited. Policymakers have ‘poor predictability’ and should be prepared to modify initial actions in the light of later information about their effects.
Policymakers might simply make errors of judgement about the situation or get the facts wrong.
This may be the result of ‘pressing political interests’. Immediate consequences may be given undue weight against future interests. Again, this needs to be corrected during reflective, balanced consideration.
Policy may reflect a set of dominant values focused on ‘a particular value area’18 (p 903). But these narrow concerns may conflict with the wider set of values in a society. ‘But within the complex interaction that constitutes society’ these actions and their wider repercussions may be overlooked.
Merton’s principles begin to explain the unintended consequences of the Home Office’s ‘hostile environment’ policy, explaining how people can be confused out of accessing medical care.
Each of Merton’s principles above has relevance to this specific case:
No one could have had any idea what impact this legislation would have on the way local GP practices would interpret the rules, how immigrants would view their rights, or what the impact would be on wider health outcomes.
Immigration was a ‘pressing current political interest’—something had to be done quickly it was growing and unpopular.
Controlling the impact of immigration was, above all, seen as a Home Office concern. The Immigration Act and surrounding legislation was part of the debate about immigration, not about healthcare or the Department of Health and Social Care.
The value underpinning this legislation was that non-British people should not be able to abuse accessing the NHS. But, we will suggest, it ran the danger of affronting a different set of values that underpin the NHS: namely, free access to healthcare for eligible people who need it. In an attempt to square this conflict access was to be limited only for secondary care in non-emergencies. It was this distinction that proved difficult to sustain especially in the political climate generated by the ‘hostile environment’. These risks were overlooked given the perceived urgency of doing something.
Key to the process of policy delivery in public services are local administrators or ‘Street Level Bureaucrats’ as Lipsky called them—those who manage and ‘ration’ access to local services.19 Some people who help determine access are front-line staff such as receptionists.19 However, GPs can play a significant role by undertaking ‘implicit rationing to cope with service demands’.20 They were to prove important in interpreting the regulations that attempted to achieve this balancing act between conflicting values. Here information for potential patients was to prove crucial.
Relatively unexplored until recently in the policy process literature has been the role of information, or lack of it and the way it is presented to users. Thaler,21 for example, examines how overly complex or burdensome procedures can prevent people from accessing their rights. He calls this phenomenon ‘sludge’. An example of this phenomenon is the confusion registering patients’ experience when seeking to understand their right to access care. Users’ perceptions may be a key to the process of mediating healthcare access. It is this aspect of the policy process with which this paper is particularly concerned.
Confused out of care
Street-level bureaucracy
Lipsky’s work,19 which focused on the role played by service gatekeepers, can shed light on the importance of front-line staff in making de facto rules about health access. This has implications for doctors leading the practices where these healthcare access policies are manifest. This, in turn, raises ethical issues that are critical in how policy shapes healthcare systems and access to care. However, the policy process literature tends to play down the important interaction between the information that is made available by those providing the service to potential users’ access to such services.
In this case, GP partners, managers, receptionists and website designers represent the front-line staff implementing government policy to control GP registration. Front-line staff can create barriers to care for vulnerable groups through misleading implementation of policy terms such as ‘normally resident’, misleading information on GP websites and gatekeeping behaviour from GP receptionists. Our analysis of GP websites and gatekeeping behaviours by front-line staff suggest that the interpretation of government regulations has significant implications for the numbers of refugees and asylum seekers registering with GPs. This evidence leads us to believe that potential users are confused as to their right to access care.
The evidence
The temporal link between hostile secondary care guidelines and hostile primary care staff is revealed by serial surveys by DOTW. A linguistic link is evident from the wording of GP practice websites. These two factors combine to support the suggestion of ‘bleed’ between policies intended for secondary care doctors and the decisions made by primary care staff.
Gatekeeping behaviour from front-line staff
The proportion of people being refused GP registration has changed between 2014 and 2017. We analysed the trend in refusals based on gatekeeping behaviour and immigration status following the introduction of legislation and a ‘hostile environment’ towards unlicensed immigrants in the UK from data collected by DOTW UK. The table below shows the proportion of patients being refused GP registration between 2014 and 2017 and of these, those refused due to gatekeeping behaviour or immigration status.
Table 1 presents data compiled from four separate studies (2014,22 2015,23 201624 and 201725) and demonstrates their relationship with key regulations, amendments and guidelines, including the original legislation and the subsequent guidelines that sought to clarify the law for GP practices. DOTW collected data pertaining to the number of refusals and the reasons for refusal. Caseworkers visited GP practices across London to help register their clients (refugees, asylum seekers, unlicensed immigrants, children, homeless people, and victims of torture, trafficking, domestic violence or sexual violence).
The table shows the proportion of registration attempts made by the caseworkers that were refused and the proportion of those refusals that were due to either gatekeeping behaviour by reception staff or immigration status. Gatekeeping behaviour was recorded as a reason for refusal if front-line staff exhibited obstructive behaviour (eg, ‘unable to speak to person responsible for registration’ or ‘receptionist could not confirm registration would be allowed’).
Sample sizes varied due to varying population sizes accessing DOTW services, but the studies can be compared over time as the methodology (including selection criteria, inclusion and exclusion criteria) remained constant. The sample population is made up of people accessing DOTW services, representing only a small proportion of this patient group. Furthermore, the attempts at GP registration were not made by the patients themselves (where other barriers such as fear of arrest and language barriers may come into play) but by DOTW caseworkers who were acting as their advocates. Therefore, the number of people from these at-risk groups who are refused GP registration is likely to be much higher in reality.
Following the introduction of legislation and surrounding press coverage, the number of people being refused registration to GP surgeries has risen and remained high. Multiple subsequent guidelines reiterating the right to primary healthcare appear not to have entirely counteracted the exclusionary rhetoric. Although they have been associated with a partial improvement, both ‘refusals’ and ‘refusals due to gatekeeping’ remain much more frequent than they were prior to promotion of a hostile environment. In 2017, over a quarter of DOTW registration attempts were refused due to the gatekeeping behaviour of practice staff and 1 in 10 were rejected due to immigration status, suggesting significant confusion regarding NHS registration guidelines among GP practice staff.
GP websites
There is evidence revealing 75% of GP practice websites state that proof of address or ID are required.26 Although British Medical Association guidance is clear that failure to provide documentation is no reason to deny registration, the language used by practices is more akin to the law on secondary care, suggesting that those laws are impacting practice in primary care. NHS standard operating principles state that: ‘A patient does not need to be ‘ordinarily resident’ in the country to be eligible for NHS primary medical care –this only applies to secondary (hospital) care’.27
This is pursuant to regulation 2 of the 2015 Regulations which states that people who are not normally resident in the UK—a term interchangeable with ‘ordinarily resident’—must pay for ‘relevant services’,28 specifically excluding services provided under part 4 of the 2006 NHS Act, that is, all primary care services (29 part 4). The concepts ‘ordinarily resident’ and ‘normally resident’ have no bearing on registration at GP practices except insofar as they might inform referral decisions.
One typical London practice asks patients to state whether they are ordinarily resident in the UK and explains why: ‘Anybody in England can register with a GP practice and receive free medical care from that practice. However, if you are not “ordinarily resident” in the UK you may have to pay for NHS treatment outside of the GP practice’.30 This information is correct and helpful to any applicant.
However, many GP practices across England misuse the term ‘normally resident’ on their websites., To take a single example, one practice in London stated that in order to register ‘You must be normally resident in the UK’, adding ‘You can still see us as a private patient if you are not eligible for NHS care’.31
Another typical website from a practice in London said, ‘If you wish to join …(this) Practice you MUST bring the following: … Photo ID (Passport or Driving Licence)’.32 Another stated, ‘You will need to provide your NHS number, your previous GP details, place of birth and proof of your current address; if you have come from abroad you will need to show us your passport, ID card or Home Office correspondence’.33 Imposing additional demands on people ‘from abroad’ could risk breaching the 2010 Equalities Act, and NHS London warns practices against enacting such policies, which ‘could lead to legal action against them’.34
Although we do not have evidence to say how this information has impacted the decisions of people accessing the websites, it seems likely that the effect will be a further deterrent and practical barrier for non-UK residents to register with a GP.
Analysis of evidence
From this evidence we can draw two conclusions: first, that a well-publicised hostile environment in NHS hospitals has coincided with an increase in the number of asylum seekers, refugees and unlicensed immigrants being refused GP registration (particularly for reasons based on immigration status and gatekeeping behaviour). Second, that some GP practices are mistakenly denying registration to people without specific documents and declaring this policy on their websites.
It is impossible to infer from this whether confused receptionists (employed by front-line doctors) are denying registration to more patients or whether patients themselves are being confused out of registering. Yet it is evident that misinterpretation of policy wording and conflicting messages on GP websites deepen the confusion and contribute to the environment of hostility. It is entirely understandable that such content should find its way onto GP web sites. Those compiling them are not lawyers and have little time to navigate their way through legal documentation and guidance. Perhaps the blame lies with those who began a process that is difficult to implement sensitively. Regardless of blame, somewhere along the line, many people who are entitled to primary care come to believe that they are not.
Given the apparent disconnect between the guidelines and the front line, it is unlikely that further reiteration of the right of all in the UK to access primary care irrespective of documentation would be sufficient to prevent erroneous refusals of registration, as Merton’s analysis might have predicted.
Ethical implications of findings
Doctors’ duties
When external influences, such as a ‘hostile environment’, impair the care of vulnerable patients, doctors compromise two central principles that underpin their ethical standards: to ‘make care of the patient their first concern’ and ‘never discriminate unfairly against patients’.35 By neglecting to counteract the negative impact of the hostile environment on vulnerable patients’ perceptions of their right to healthcare, doctors fall short of their ethical duty.
Policymaking is a continuous interactive process17 between different actors. GPs are one of the important actors and have power in the political process if they chose to exercise it. At the interface between policy and patients, they have a unique opportunity to combat the misinterpretation of policy that has arisen.
Doctors who are paid to provide primary care must not exacerbate health inequalities by excluding certain patients, or colluding in the ‘unanticipated’ exclusion of patients, and must instead empower patients to access primary healthcare. Although many actors and external influences are at play in creating the ‘unanticipated consequences’ described, GPs are uniquely placed to protect patient rights to access primary care. Providing access to primary care is, therefore, a medical responsibility; avoiding that responsibility is unethical medical practice.
A comparison with the development of informed consent is informative. During the twentieth century the onus shifted to doctors to ensure patients are aware of their right to make decisions about their own treatment. Just as there was once a disconnect between treatment plans communicated to patients and the ‘frontline’ treatments which they themselves experienced, there is now a disconnect between patient rights to access care and the actual experience of patients from certain marginalised groups.
Using the principles of how the ethical framework surrounding ‘informed consent’ has progressed in the last century, it is possible to see a way forward in which GPs take the lead in empowering people to feel free and encouraged to access primary care.
Lessons learnt from ‘Informed consent’
The concept of obtaining ‘informed consent’ clarified the responsibilities of doctors. As an ethical doctrine, informed consent is a process of communication between doctor and patient, to enable the patient to make an informed and voluntary decision about accepting or declining medical care. This ethical concept is integral to contemporary medical ethics and practice in the UK. Although primarily an ethical requirement, it is partially reflected in legal doctrines.
We will focus on comprehension (or understanding) and free consent. Both facilitate a patient's ‘self-determination’ and often empower patients to make positive healthcare choices. When a freely chosen, well-understood course of action is chosen by a patient, doctors should ensure patients are provided with it, unless it otherwise conflicts with the doctors’ duty.
Maximising understanding of rights
To obtain ‘informed consent’ doctors have a responsibility to maximise their patients’ understanding of the circumstances of the decision. This includes an awareness of their own situation, health needs and possibilities available. A similar concept can be applied to the responsibility on doctors to maximise the ability of patients to understand the right they have to free primary healthcare, the alternatives and why it is so important that they access it. Accessing the preventative and early intervention medicine that primary care provides is crucial in the refugee and asylum seeker population due to the high burden of ill-health and chronic disease they face. Doctors should ensure this is effectively communicated to patients in a language they understand.
Removing hostile and confusing barriers
The ‘sludge’ described by Thaler21 encompasses factors which make good choices more difficult by creating confusing and distracting barriers. These barriers are powerful because of human inertia. Doctors must be alert to the power that negative or unwelcoming messaging may have on vulnerable populations. ‘Hostile environment’ policy can result in confusing or conflicting messages reaching patients regarding their right to access care. Planting the seeds of doubt regarding access to healthcare may prevent people from requesting access. It may also mean that potential registrants are more sensitive to gatekeeping behaviour from reception staff. Although not manipulation or coercion, it is important for doctors to be aware of the potential for prejudices, values or beliefs of front-line staff or website designers to impact the way in which patient information is presented. In a similar way to how obtaining informed consent places the onus on doctors to try to ensure the decision is made voluntarily and not ‘undue duress’, doctors have a responsibility to make sure people are not deterred from registration due to ‘sludge’ in the form of hostile language on websites or front-line gatekeeping behaviour.
From principles to practice
There are of course significant differences between the progress towards an ‘informed consent’ standard and the potential for possible progress in reducing ‘sludge’ preventing access to primary care.21
Over several decades, a series of high-profile negligence cases determined the rights of patients to make informed decisions about their care. This process led to a contractual obligation for doctors to ensure patients’ rights were not violated with regard to consent. Although we can draw important lessons from the conclusions of informed consent, the way in which that gold standard was reached is more difficult to apply in the case of access to care.
Failure to register with a GP could cause mortality and morbidity in this population. However, despite this being both difficult and confusing, it is not impossible. As such, claiming negligence or a violation of rights would be hard. The right to access primary care is already enshrined in policy. There is no need for judicial intervention or further legislation. This issue turns on implementation and empowerment. The very problem is that central action is difficult. Moreover, the affected population are, by definition, less assertive than the general population so they would be unlikely to test the law in court. Negligence cases are unlikely to create cultural changes here.
Thus, the solution rests in installing a sense of responsibility in GPs to demystify government policy in their practices. Doctors need to be aware of the pivotal power they hold in ensuring their practices make it as easy as possible for people to register. With this power comes a duty to actively address: language or literacy barriers; lack of means to travel to clinics; unlawful and unnecessary requirements on GP websites and gatekeeping behaviour from front-line staff.
Conclusion
The ‘Hostile Environment’ towards refugees and asylum seekers has influenced the way in which policy is interpreted by potential service users. This has led to people believing they do not have a right to access primary care, contrary to UK regulations and the ethical principles that guide doctors and underlie the NHS constitution. This problem threatens to widen healthcare inequalities by creating barriers to access to healthcare in vulnerable populations, including refugees and asylum seekers among others.
Placing the responsibility with practitioners to ensure people can exercise autonomy in their decision to access free primary care may represent a way forward. Furthermore, this facilitates practitioners to take ownership of their important role in promoting the health of the public and act in concordance with their professional ethical standards by placing patient care at the centre of their practice.
Footnotes
Twitter @nathanhodson
Contributors Both authors conceptualised the project, conducted the research, helped draft the initial manuscript, made revisions and prepared the manuscript for submission. Both authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
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