Advocacy in neurology

The concept of advocacy literally means to speak for someone. Rooted in law, the term has been increasingly used in medical and patient-related contexts in the past years. This book focuses on advocacy activities in the field of neurology. Neurology deals with heterogeneous and diverse populations of patients, who suffer from disability, chronic, and often progressive diseases. The complex characteristics of neurological diseases yield exceptional challenges to plan for and implement advocacy activities on all levels. All stakeholders are challenged to provide the support patients need; advocacy facilitates this process and bundles efforts to reach the objective of the advocacy task. Building on the premise that advocacy goes beyond merely theoretical claims, this book collects and organizes advocacy approaches in practice. Thereby, we draw on different dimensions of ‘advocacy in neurological practice’ and discuss implications for management, healthcare, planning, and policymaking. We place special emphasis on what advocacy means for several different diseases, such as amyotrophic lateral sclerosis (ALS), brain tumours, MS, epilepsy among others. Contributions include best practices, lessons learnt, and tools to be used. The main goal of this book is to raise awareness for advocacy in neurology and empower readers to plan for and implement appropriate activities. In advocacy, anyone can be both an advocate and an advocatee. This book offers a seminal contribution for anyone who is pursuing or intending to pursue advocacy in neurology and related fields.


Introduction
No man is an island. So are professionals like doctors. Medical persons are primarily expected by themselves and others to be proficient in the theoretical and practical aspects of their subject. However, oft en it is not realized that they must also be conversant with and be active with regard to many social and political interactions. We live and work in a much larger world. Even though we are profi cient in our four primary domains, i.e., clinical, surgical, teaching and research, we encounter situations and moods when we realize that there are many issues that must be changed. At times, there may be the implementation or unwanted changes that we desire to resist. These may be issues related to patient care, our professionalism, clinical practice, competition with other specialties, payments for our performance and protecting the turf or scope of our work.
The importance of advocacy for medical professional is being recognized off late, not the least due to complex social and administrative environment. The latt er has a direct eff ect on the rights and duties of physician, his autonomy and the type of care he is able to provide to his patients. Nothing can be far from the truth that the art and science of medicine is limited to making a diagnosis, writing a prescription or doing a surgery. It is considerably wide and comprehensive. This knowledge is oft en erroneously assumed to be present apriori and no need is felt to defi ne it and describe it in a systemic manner.

Advocacy regarding what?
Advocacy could be regarding many subjects or issues or situations for which we think that a change or improvement is needed.
The issues could be as broad as the lack of neurologists and neurology residency training programs in country to as narrow and specifi c as the prevention of peripheral nerve injury by intramuscular injections. The relevance of some issues could be country specifi c. For example, Medicare and Medicaid payments in USA and tort reforms to cap huge compensation amounts by American courts are not our problems. However, many themes are universal and so are the basic methods of lobbying, pleading, educating, speaking-up and leading [Tables 1  and 2].
Currently, we have only one neurologist for one million population in India. The number of residency training programs and neurologists being trained each year is highly inadequate. Certain parts of country have lagged behind more than others. A few neurologists have been struggling hard with ministers, secretaries and directors, trying to convince them about the need for the establishment and development of independent neurology and neurosurgery departments in various medical colleges; they require help.
Neurologists are often justly concerned that their professional skills, experience and time spent with patients are not adequately reimbursed. In countries, where payments to physicians are calculated through an extensively predetermined code, suffi cient consideration is not given to cognitive services and counseling. Relatively more remuneration is earmarked for procedures and investigations. The associations of neurologists have been constantly working on these matt ers. The lobbying is likely to be more successful if in addition to offi ce bearers, ordinary members -who have been trained in skills of advocacy and activismalso join in at myriad fronts. In India, the payments are mostly out of packet by patients but things may change in future.
There are other issues pertaining to protecting and expanding the turf of medical practice. For example, should physiotherapists or physiologists be permitt ed to perform EMG and NCV tests? No, they should not. Should neurologists not get share in reporting on neuroimaging because they provide crucial inputs on clinical condition of patients? Yes, they should. Neurologists need to learn a few lessons from other specialties such as cardiology, radiology and neurosurgery. If cardiologists can do coronary angiography, angioplasty and even carotid artery procedures, why do neurologists fail to claim the terrain, which should naturally belong to them?
We can also act as seed or catalyst or motivators for inception and early groups of patient support growth dedicated to individual neurological diseases in large number of cities and regions. Somehow, we Indians are not good at "joining in" and "being activist," barring religion or caste based associations. Some neurologists in few metro cities have taken a lead; however, the over all eff orts and accomplishment are far too infrequent and too litt le.
A district collector or divisional commissioner may be approached to provide governmental logistic support for health camps dedicated to one or more neurological diseases. A civil surgeon or district health offi cer may be requested to propagate health education posters on epilepsy or stoke through the dispensaries in the region.
State and national level quiz competitions with att ractive prizes and booklets (which could be carried home) on questions and answers with explanations can increase awareness and popularity of neurology in undergraduate and postgraduate students.
Short-duration certifi cate courses in neurology for MBBS and MD (medicine) doctors as primary care physicians, family physicians, general practitioners and general duty medical offi cers may be organized at regional or state levels.
A few years back, a self-proclaimed practitioner of Ayurveda at Rishikesh declared himself as a savior of patients with epilepsy through an expensive advertisement campaign. As a rationale and anticipated act of advocacy and leadership, the neurological community of India should have taken up a united stand and acted against such quacks who make claims at multiple fronts or forums such as media, executive and judiciary. Issues of concern Actions which may be taken by neurologist • Epilepsy was included along with insanity as one of the grounds Senior offi ce bearers of Neurological Society of India lobbied for annulment of marriage with government, parliament and judiciary to amend that provision • Paucity of neurology and neurosurgery residency training programs To increase the awareness on magnitude of disease burden of and independent upgraded neurology departments in teaching and neurological ailments at community level amongst policy makers, non-teaching hospitals in public sector all over the country beurocrats, politicians, ministers and media • Poor knowledge of neurological disease amongst general public Public education and patient education initiatives at local individual and patients. Prevalence of myths and stigma and discrimination level as well as collectively at state and national level. This would (e.g., epilepsy) cover print and electronic media both • Poor up-gradation of basic neurology and neurosurgery knowledge Brief neurology educations programs (CMEs) for such groups at amongst general practitioners and primary health care workers in local level in an adhoc manner or at state and national levels in rural and remote areas a systematic organized manner • Only a very small fraction of patients with stroke receiving Public awareness on warning symptoms of brain attack emergency treatment and facilities for stroke units • Poor rehabilitation facilities for neurohandicapped persons To lobby with state and central governments to establish better departments for physiotherapy, occupation therapy and sheltered workshops at all district hospitals • Lack of patient support groups dedicated to specifi c A few organizations have come up in metros and big cities, but more neurological diseases efforts are required The use of media in print and electronic format is an essential component of any advocacy eff ort. A 30 second spot on radio or television that extols the advantages of iodized salt is addressed to general public. It goes a long way in reducing the incidence of a common preventable neurodevelopmental condition with mental retardation. Indian Academy of Neurology should have and could have taken initiative long back to create and launch similar spots for treatability of epilepsy, warning symptoms of brain att ack, prevention of head injury by wearing crash helmets, etc.
Public education and patient education overlap but they are distinct activities. Public education is addressed to population at large in a mass manner. It is addressed to every body whether or not aff ected by that disease. Its core messages are crisps, brief and salient. Rotary District 3040 launched a massive public education campaign on epilepsy in 1990s in 20 districts of western Madhya Pradesh with the help of an educational grant from International League Against Epilepsy. Patient education is more focused and detailed. It can relate to common as well as very rare disorders. It is not distributed randomly in a wide manner but channeled selectively to persons suff ering from specifi c ailments, to patients, their family members and supporting volunteers.
Neuroscientists have great responsibility in constantly being vigilant about the ways and manners in which media portrays myths and negative images about neurological diseases. We must engage them, point out the fallacies and educate them in a decentralized manner by individual neurologists and also in a centralized manner through our state level and national level associations.
More regular, frequent and formal meetings with schoolteachers should be organized in a widespread manner to propagate messages about epilepsy, learning disability (dyslexia), etc.
The code of good practice for employability of persons with epilepsy and other neurological impairments should be popularized amongst employers and human resources managers.

Advocacy by whom?
From time to time, medical doctors, including neurologists have been playing roles of advocates, leaders or activists, albeit mostly in their personal capacity. It has oft en been considered as a deviation from primary professional duties and rather looked down upon as something nonacademic, inferior or secondary; it need not be the case.
Lobbying, pleading or advocacy can be performed by individuals (neurologists), city-based groups, state level societies, groups formed as per interest (for example, Stroke-subgroups) and national associations. Even international bodies undertake such initiatives. International league against epilepsy launched an ambitious program in 1997 called "out of shadows;" various national societies joined in. This was a classical and excellent example of advocacy. More such examples are required at various levels for stroke, neuromuscular disorder, Parkinsonism, dementia, multiple sclerosis, neurotrauma, brain tumors, developmental disorders, etc. On many occasions, we need and seek and obtain help from nonprofessional organizations. Rotary International has been a major partner in the drive for the eradication of one of the commonest neurological diseases of yesteryears -poliomyelitis.
Neuroscience India Group (Chennai) has been organizing conclaves on to bring out white paper on disability of epilepsy and to change health policy so that patients with refractory epilepsy may get benefi ts and privileges as disabled persons.
Several nongovernmental organizations can be engaged and co-opted by neurologists in individual capacity at the local level. However, it will help if the regional or national associations evolve a vision, policy, action plan and guidelines.
The American Academy of Neurology and many other national associations have been doing a host of activities that would fall under the umbrella of advocacy -maintaining a website for general public, free distribution of patient education magazines, publication and wide-dissemination of a large variety of brochures, booklets, posters. The Indian Academy of Pediatrics has been organizing quiz for undergraduate medical students at multiple levels with a grand fi nale during their annual national conference. While waiting for the national neurological bodies to do something similar, Madhya Pradesh Neurological association has taken the lead.

The local branches of Rotary, Lions, Red Cross and other social organizations oft en pitch in for projects undertaken by neurologists in individual capacities. The Rotary
Club of Indore Uptown supported activities on epilepsy, dyslexia, cerebral palsy and stroke.
We need to appreciate that our students and patients can be our best companions in our eff orts. It makes greater impact in the minds of people who matt er if we substantiate our pleas with real-life stories of patients and secures their vocal support. We shall consider having arrived when we are able to setup a national coalition of a number of patient support groups for as many neurological diseases in as many cities possible. The activism arising from amongst patients shall be the most powerful voice in favor of neurological sciences. We need to do a lot of lobbying at various levels to ensure similar support for our discipline. If our cause is helped by clubbing of neurology with psychiatry or mental health (a sort of piggyback), we need not feel shy or belitt led. [1] Loksabha and Vidhansabhas are empowered to enact laws, many of which have bearing upon neurological practice and patient welfare. Our societies and associations need to oppose or support proposals in legislature depending on situation. Indian Academy of Neurology should att empt to push for tabling and passage of acts mandating minimum supportive treatment for epilepsy at primary care level and basic rehabilitative services for stroke survivors at district level. We have not tapped the avenue of meeting and infl uencing members of Loksabha, Rajya Sabha and legislative assemblies in states. Imagine the scenario that a large number of our members, having been trained and motivated in advocacy, are constantly meeting representatives, teaching them about various issues that we consider important, reminding them again and again, persuading them to take action by various means such as tabling motions in the house and asking questions to governments. The fact that many elected representatives are not educated or politically mature should not be an excuse.

Role of formal training
Is it possible to impart formal training to a doctor or for that matt er any individual or group so as to make them more efficient advocate of their own and their patients? Will that training result in bett er orientation and channelization of expertise of doctors with respect to social and political aspects of their work? Will it ultimately benefi t the target groups and society as mentioned above? Will it make a diff erence if professional organization of doctors has a subsection or a cell dealing with issues, which require leadership, lobbying, advocacy or activism? In my opinion, the answer to all the above mentioned questions is an emphatic "yes." We do need to sensitize our members and offi cer bearers about various issues that concern and agitate us. Those of us who feel strongly about an issue or other will be able to undertake some action in a bett er manner if they are helped by a formal training and joining hands with like-minded colleagues.
A policy of lassies-faire is no good. We should not let the things merely drift the way they have been going till now. We should have the confi dence of being able to do something positive about our subject, discipline, profession and patients at community level and also at national level. Every neurologist/neurosurgeon has one or more issues that he or she considers important. In an informal postal survey of members of Indian Academy of Neurology and Neurological Society of India, we received around 100 responses. Almost of all agreed about the need for more proactive advocacy by all of us and importance of a formal structured training for the same (Appendix).
Many professional medical organizations have been consistently encouraging, supporting and training their members to become bett er and more active advocate. Leading in this respect are Accreditation Council for Graduate Medical Education (ACGME) in USA for pediatrics. [2,3] Family practice, orthopedic surgery, ophthalmology and cardiology are other branches, which have developed good programs for organized professional advocacy. Unfortunately such training is still not incorporated at the residency level.
Donald M. Palatucci Forum on advocacy and leadership by American Academy of Neurology is an award-winning program. Many international delegates (including four from India, two from Pakistan) have att ended it and vouch for its relevance in our context too.
Palatucci program is an intensive workshop over four days. Thirty trainees are called in aft er a competitive selection based on narrative answers to questions such as your previous work, your intentions for future, etc. The faculty comprises senior administrative staff from American Academy of Neurology, management gurus, communication experts and leaders from other organizations. Apart from lectures, more emphasis is given to small group discussions, mock rehearsals on making a presentation, meeting a minister, giving an interview, etc. Ten mentors or advisors are called in from amongst previous years graduates who did well. They sit through with new trainees allott ed to them and guide them chalking out one action plan each, which will be carried out by that trainee over next one year.
Wasay and Hauth demonstrated the success of the program. [4,5] They analyzed the outcome and impact of the forum through an email questionnaire to 79 odd trainees. The number of hours spent each month on advocacy related activities and accomplishment of action plan goals were the outcomes. For approximately 78% of the advocates, the length of time they spent on advocacy more than doubled aft er the training. Majority also reported partial or full accomplishment of goals. The Indian Academy of Neurology must have an in-house program to train and encourage members interested in advocacy. It will make more than a tangible diff erence for the bett er if professional organizations accord due priority to advocacy, leadership and lobbying. A website will be a powerful tool wherein like-minded activists could share views and opinions. An annual training program may be conceived to enhance the skills of interested and motivated members. Trainers can be drawn from fi elds of business management, media and NGOs. Trainees will be advised to work upon an action plan at a time and chart its progress in a time-bound and measurable manner. Other national associations have been doing good work in India and abroad. There is no need to re-invent the wheel. We may emulate other's plans, with modifi cations if necessary.
A formal training and interaction with neurologists engaged in some sort of advocacy will boost the morale of members. There are a large number of tips and advices that must be learned and internalized. To be a bett er advocate one has to shed inhibitions while meeting the offi cials, politicians, judges, lawyers, police offi cers, ministers and journalists. It helps if you receive a bit of training for engaging the media, giving interview, submitting memorandum, using advertisement and propaganda, addressing small or large groups.
All of us do act as an advocate of someone or ourselves, sometimes in our life. We need to realize that neurologists can play a very useful role as advocates for the profession of neurology and its benefi ciaries, i.e., patients suff ering from neurological diseases. If we do not educate the public and governmental offi cials with regard to who we are and what we do, we risk losing the care that we provide our patients. We have to learn the skills to promote the fi eld in order to improve neurology care that is so badly needed in this country.