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Patient power, human rights and access to primary health care services in an NHS system

A central theme of contemporary primary health care in England is patient power the power of the patient to make real choices both as to who provides the service and to the nature of treatment. Patient power is of particular relevance in the context of a National Health Service which has traditionally tied patients to the GP practice in which they were registered, such that shopping around for alternative providers who might be prepared to offer alternative treatments was difficult, if not impossible. Funded health systems predicated on reimbursement of costs, as is the case in much of the rest of Europe and in Australia, and the provision of primary health care services in the private sector across the world, have always allowed significantly greater patient choice. Recognition of the patient’s right to choose is not a one-way process. There is a corollary to choice the obligation on providers to respect that choice. This means that, ‘The NHS will have to share a great deal of knowledge with patients, users and carers so that they are informed and better equipped to use that knowledge’, bearing in mind that there is ‘evidence that direct involvement of the patient in the selection of their medication leads to benefits’ (Secretary of State, 2003). The recognition of the patient as a stakeholder rather than a grateful recipient in the provision of health care services is a new approach within English National Health Service philosophy. The NHS has until now been based on ‘a paternalistic model of decision-making’ (Department of Health, 2001). Recognizing patient choice will require adjustment to both the process and the environment of health delivery. This will be even more the case where services are provided in such a way that those ‘most at risk of ill-health also tend to experience the least satisfactory access to a full range of preventing services’ (Department of Health, 2002). There is evidence of discrimination on grounds of age within both primary and secondary health care (Gulland, 2003; Kmietowicz, 2001; Macdonald, 2003; Tonks, 1999). Patients with learning disabilities are disadvantaged in access to services such as cervical screening (Aspray et al., 1999; Pearson et al., 1998), and patients with Down’s Syndrome are disadvantaged in access to lifesaving surgery (Leonard et al., 2000; Mayor, 1999). The Government White Paper on disability (Secretary of State for Health, 2001) recognizes that mortality rates are higher for persons with learning disabilities because of disadvantaged access, and suggests that primary care teams should play a key role in supporting improved access to health care. Enabling real power in relation to patient access to health services will inevitably create tensions in a system which has always retained total control of the distribution of health goods. Patient power will be sorely tested where the provider considers the chosen medicine or treatment to be unsuitable, unavailable or too expensive, when health care policy inhibits access to services the patient wants or needs, or when patients demand access to individual practitioners whose patient lists are already overflowing. English law has until now been reluctant to interfere with decisions on access to health care, but the Human Rights Act may enable patients to use human rights arguments to enforce the exercise of patient power. Primary Health Care Research and Development 2004; 5: 187–190