Advocacy for patients with neuropathic pain

Pain is a nearly universal yet highly individual experience, with broad determinants including genetic factors, mechanism of injury, medical comorbidities, social aspects, and variations in coping styles and belief systems. In this chapter we examine how pain impacts individuals, healthcare providers who care for individuals with pain, and the overall health system with an emphasis on the importance of advocacy at each level. Key issues include the importance of continuing research in developing effective treatments with minimal side effects, improving access to and understanding of complementary and alternative treatment modalities such as cognitive behavioural therapy, developing continuing medical education programmes that empower physicians in the management of complex pain disorders, developing educational materials for patients that enable them to participate in the prevention and/or treatment of pain disorders, and integrating efforts within and across institutions and at a health system level.

Advocacy in amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is among the most severe neurological conditions which leaves the patient in a speechless (deefferentiated) state. Advocacy is yielded to give patients a voice and to recognize patient’s actual preferences and needs. The chapter reviews the most important levels where advocacy is required: the affected families, professionals, the public, and health and science politics. When advocacy is performed in a considerate and thoughtful manner, patient’s coping mechanisms can be activated and quality of life can be secured to facilitate life in dignity; caregiver’s burden can be substantially reduced. For the public and scientific world, advocacy may lead to more efficient therapeutic approaches and allows for patient-centred care.

International advocacy: Case studies and lessons learnt

This chapter takes an international perspective on advocacy. It focuses on the question of how international advocacy projects can look like and what makes them successful. In doing so, we turn to the practical and applied sides of advocacy. Advocacy activities aim at taking the voice of patients to inform, protect, and support them. In the first part of this chapter, we will present successful cases of advocacy activities in neurology. In the second part, we will reflect on personal experiences where advocacy activities were or should have been implemented. Reflecting on these cases, we present some lessons learnt that advocates may want to consider when they plan and implement international advocacy activities.

Physician autonomy and the pharmaceutical industry

The physician–industry relationship is a topic that generates keen interest among physicians globally. This chapter reviews the potential risks and benefits of such relationships in patient care. Physicians must adhere to strict professional standards and strong ethical principles, with the prime interest of offering the best possible care for the patient while using the resources available through pharmaceutical industry partnerships. One must never cross the boundaries in this complex interaction; physicians should continue to be the best advocates for patients, and not the pharmaceutical industry. Other aspects of relationships between the pharmaceutical industry and doctors’, trainees’, and residents’ perspectives in the industry, essential drug policy solutions in Sri Lanka, and several key points from the Australian Medical Association’s position statement on medical practitioner’s relationships with industries, are also discussed.

Ethical issues in neurology

Neurologic diseases may lead to brain dysfunction and consequently to impairment of consciousness, cognitive decline, and emotional disturbances. These conditions may give rise to a wide array of ethical issues. Cerebral dysfunction can be temporary but many conditions are chronic and/or progressive, and the impact of such long-lasting brain dysfunction on decision-making processes is substantial. In this chapter, disturbances of consciousness and the decision-making process, with focus on communication during the various stages of coma, persistent vegetative state, and permanent vegetative state, are discussed. Special attention is paid to the role of proxies, who often have to act as surrogate decision-makers. Further, some aspects of brain death and organ donation are reviewed and the role of the neurologist as a specialist with respect to brain functioning, but also as an advocate acting in the interest of the patient and the patients’ relatives is depicted. Subsequently, consequences of impaired decision-making capacity in dementia and other diseases leading to diminished cognitive functioning are discussed and a short reflection is dedicated to driving ability. Ultimately, ethical issues in connection with decisions on withdrawing and withholding life-sustaining treatment including end-of-life decisions are discussed, both in neurologic diseases with diminished cognitive functioning but also in neurologic disorders, like motor neuron disease, where cognitive functions are preserved.

Advocating for orphan diseases in neurology

Patients with rare diseases face several common problems caused by the rarity of their diseases. Among many other issues, these include the often long-delayed diagnosis, the limited knowledge and dissemination of knowledge on the diseases, the lack of specific therapies, and the inadequacies of healthcare systems to deal with rare, complex disorders. In recent years patient advocacy organization have emerged for many different rare diseases as a consequence of these unmet needs. They have started to address these issues by many different advocacy actions such as education, political advocacy, and measures to facilitate research and drug development. Successful examples have shown that such efforts can bring real advances for some rare diseases.

Using PR tools for advocacy

Advocacy in neurology, public education on the field of neurological diseases and care, and public relations as a means of supporting both advocacy and public education efforts, are closely interrelated. Advocacy activists are, in many instances, making use of public relations instruments—for the sake of public education campaigns as well as for awareness and mobilization purposes. PR tools play an important role in neurology advocacy. In some diseases, such as epilepsy, stroke, or dementia, awareness campaigns, public information, education, and advocating for an optimization of care can make a big difference with respect to prevention, early diagnosis, or access to therapies. Therefore, the question of how to best make use of the instruments in the PR toolbox for the purposes and aims of advocacy is of major practical relevance. In this chapter major PR instruments, particularly in the field of media relations and their practical use, will be described. Also, some critical issues with respect to the relationship between advocacy and the widespread efforts of the healthcare industry to integrate patients advocates and organizations of health professionals into their PR and lobbying strategies will also be mentioned.

Patient involvement in European cancer societies: The example of ECCO—the European CanCer Organization

This chapter, ‘Patient involvement in European cancer societies’, describes how an oncology healthcare professional organization, the European CanCer Organisation (ECCO), engages with patient groups. It outlines the structure established by ECCO, the Patient Advisory Committee (PAC), and how it helps ECCO realize its vision. It gives examples of the inclusion of the patient perspective in scientific congress programmes, policy papers, and events. Patient advocacy has a long history in the field of oncology. Healthcare organizations give increased emphasis to the patient experience to provide care that is of most value to patients but also an essential component of sustainable healthcare.

Patient and caregiver advocacy

This chapter, ‘Patient and caregiver advocacy’, examines the context for advocacy for people who are living with a brain tumour, why it is different, how it manifests itself, and what advocacy looks like. It explores the challenges that come with living with a brain tumour and how advocacy can alleviate these challenges. The different advocacy roles are reviewed, including an exploration of how some patients can become advocates for others, while others do not. Underpinning this however is a need to be responsive and agile throughout what can be a very fluid, dynamic, and complex journey. Anyone who finds themselves supporting someone who is living with a brain tumour will find this chapter useful.

What is advocacy?

Neurology is concerned with diseases of the brain, spinal cord, and neuromuscular system. Neurological diseases can be acute or chronic, and residual or progressive disease often leaves patients with handicaps and disability. Besides many frequent neurological diseases as stroke, epilepsy, movement disorders and others, neurology also includes rare and orphan diseases. In addition to science, treatment, and care, patients and carers often need support at various levels and for distinct problems ranging from individual to global issues, which will be defined as the micro-, meso-, and macro levels. Advocacy, originally defined as ‘giving a voice’ to patients and creating awareness, becomes an essential component of neurological practice. The term advocacy is used in medical, social, and several other contexts. Advocacy usually requires an advocate, client, or object, and usually another party or position is present. In the medical context, advocacy is often fuelled by altruistic elements. Advocacy in neurology can be achieved by different methods and at different levels. This chapter provides an introduction to the edited volume on ‘Advocacy in Neurology’ and gives an outlook on what the reader can gain from this book by summarizing recurrent themes and highlighting different approaches in individual chapters.