Advocacy for Neurology: Local, Regional and National

Advocacy is a very broad term with multiple meanings and nuances for different stakeholders and the cause for which advocacy is to be discussed today is promotion of brain health with in India promotion of brain health itself is a very broad and multifaceted concept it includes

1. Better brain health in healthy general population at all ages

2. Prevention of neurological diseases.

3. Restoration of brain health in those suffering from neurological diseases and

4. Rehabilitation of people disabled due to neurological diseases coming to the one and two better brain health.

Healthy life lifestyle is applicable to all not only brain health but every aspect of Health which includes nutrition, physical activities, sanitation for example Neuro-Cysticercosis and Cerebral Malaria we used to see a lot about three decades back now they are much less vaccination and maternal and child health services so all those things are applicable for healthy lifestyle for all and they will promote the brain health also there are many of advocacy.

Advocacy about what? advocacy about brain health in general or it can be about a stroke care or epilepsy care or some particular disease.

Advocacy by whom? advocacy by neurologist are by stroke survivors are patient suffering from a given neurological disease they are also Advocate.

Advocacy addressed to whom? it is addressed to health policy makers to the director health services and to Media.

Advocacy for whom? for general public or various populations at risk from for different neurological diseases.

Advocacy how? by delegations, legislation, interviews, media coverage, lobbying, pleading, social activism.

Activism these are all many facets of advocacy for me the crux of advocacy is awareness and education and there are many recipes and target groups for awareness and education first and foremost is the general public the other targets are patients and caregivers, Primary healthcare workers, Paramedical health workers, Students, Doctors (MBBS, MD, DM), Media, Administrators.

Regarding general public being the recipient it has to be through mass media the messages have to be Salient in the form of slogans or on liners or in the form of G.I.F. images are very brief any action maybe on billboards maybe on digital LED displays like we see in the Airport arrival corridors. So, this is how we go for the awareness and education.

Who creates the content for general public about brain health neurologist I have done a lot we take the help of creative advertisers and we can have crowd sourcing through competition and prizes.

The rule of saturation level coverage should be applicable for mass media for general public and the Examples:    

                   – हम दो हमारे दो,

                   – पोलिओ –एक बूंद जीवन की

                   – आयोडीन युक्त नमक

                   – HIV-AIDS

                   – मतदान एक अधिकार और कर्तव्य

                   – बेटी बचाओ बेटी पढ़ाओं

                   – भ्रूण का लिंग परिक्षण एक अपराध है

and so many things so similarly the health brain health related messages will be successful only if they follow the example of saturation level coverage.

The content for health literacy related to brain health has to be created in Indian language unfortunately it is a sparse in variety and depth it is a variable quality it is not widely available and not widely accessible and not distributed well.

As a national advocacy leader, I will execute many action plans:

(a) To constitute a National Committee of content creators. To distribute the task of creating the content to neurologist and other volunteers including patients and caregivers.

(b) To enlist the titles of write-ups of because the titles can go Long Way epilepsy is one title but then epilepsy can have 20 brochures related to different aspects of epilepsy and,

(c) We will make ample use of arts and Fine Arts and Humanities related content we will take help of creative content.

Writers advertising and media Personnel, Translators, Artists and literary authors here are some of the examples of the brochures created by me for health education related to many neurological diseases.

What should be the general messages for promotion of brain health like neurological diseases are common many neurological diseases are treatable and preventable. Please consult a Physician soon in case of listed symptoms. Never forget warning signs of a stroke and reach an appropriate hospital. Learn the simple steps of first aid for neurological emergencies and lifestyle measures help in promoting brain health.

(1) So those were the Salient messages for general public now coming to the education and awareness for patients and caregivers the message for them is get educated about your disease.

A lot of content is needed in Indian languages

I have created much.

(2) Learn to talk about your disease with confidence.

(3) Learn to demand best possible care.

(4) Become an active member of patient support group in your area.

(5) Take leadership role in PSG

(6) Group and contribute to the content of health education literature including your own narrative skills.

I carry these type of posters in my clinic stories are welcome please tell or right stories about your own illness and we need such stories more and more Public Service advertising and propaganda this is something very important. and we have not utilized so far in our country there are many countries in which by law Public Service advertising and propaganda are mandated.

I am glad that in the November 2022 government of India Ministry of information and broadcasting issued an order about obligation of Public Service broadcasting because Airwaves and frequencies are public property and they need to be used in the best possible interest of the society Public Service broadcasting for a minimum of 30 minute in a day on the theme of national importance and social relevance and they have enumerated many thing out of which Health and Family welfare is a very important part so we should utilize this rule obligation of public service broadcasting and not only for channels.

I think it should be applicable to print media also and this will help us in distributing the health education related messages polio vaccination Drive ionized salt awareness about warning signs of a stroke persuading.

The bikers to use the crash helmets.

Messages about epilepsy there are many messages which need to go like epilepsy is common it is treatable it is non-contagious it is not necessarily hereditary it is not Insanity it is not incompatible with employment marriage and Parenthood.

Similarly messages about dementia messages about learning disabilities and other neurological disabilities.

The main attributes of a good public education are it should be good quality it should be abundant in quantity and flowing and the size should range from few punch lines to a poster to a paragraph to a flyer to a couple of pages in a brochure to a booklet to a full length book and it should range again from basic facts simple to very complex never underestimate the intelligence and interest of the recipients it should be in local languages its layout should be of high quality and it should be in print and digital format.

Neurologist as advocates will do a good job if they prepare WHITE PAPER

What is white paper?

White paper is an official document on behalf of Indian Academy of Neurology or neurological Society of India or Ministry of Health and Welfare about Neurology in general and about individual diseases in particular.

These white papers will be in all Indian languages and they will serve as a handy document while leading a delegation to policy makers ministers media people and we have to identify the issues which will make a difference stroke care IV IG Supply, epilepsy OPD drug Supply, right up to Primary Health Care Center, Botox injections, Plasmapheresis facilities in public sector Hospital, Orphan drugs.

We all neurologist should become initiator, guide, catalyst and supporter of patient support groups.

What can be the suggested content of a white paper on neurology as an ad for advocacy.

1. The definition of the field.

2. The community burden of neurological disease.

3. The appallingly low ratio of neurologist in population and need for capacity enhancement.

4. Some scope of preventability of neurological disease.

5. The huge unmet need for rehabilitation and paucity of paramedic professionals 6. The need for public health education and PE pragammes.

7. The value of nurturing of patient support groups.

All these things will be highlighted.

1. What do I expect from National task force on brain health this is my dream and it should be the dream of every neurologist in India following post should be sanctioned for each of the 800 odd District hospitals in India.

                   (a) Neurologist

                   (b) Neurosurgeon

                   (c) Physical Medicine + Rehabilitation Consultant

                   (d) Palliative medicine consultant

                   (e) Physical Therapist

                   (f) Occupation Therapist

                   (g) Speech Language Pathologist

                   (h) Clinical Psychologist

2. Following well equipped fully functioning departments at every Medical College in India.

Should have a Department of (a) Neurology, (b) Neurosurgery, (c) Psychiatry

(a) School of Physical Therapy + Occupation Therapy.

(b) School of Speech Language Therapy

(c) Physical Medicine & Rehabilitation.

(d) Clinical Psychology & neuropsychology and we need a national policy for promotion of patient support groups.

(a) We will define the patient support groups and (2) their criteria we will make a list of diseases for which PSGs will be recognized. (3) We will define an outline of bylaw for PSGs (4) and an outline of government support to Patient support groups and (5) They should be treated on the lines of Cooperative societies.

Some of the examples of advocacy actions which have been taken by patient support groups.

In many cities they Foster a sense of kinship and solidarity.

They persuade the local and State Health authorities to ensure regular uninterrupted supply of Medicine.

They act like lobbying the to persuade local Health authorities to make Provisions for supply of relatively expensive drugs for poor patients like IVIG and TPA.

To lobby for reduction of the cost of the drugs and devices with industry.

To lobby with national health authorities for policy matters, funding, and research.

To encourage more persons with neurological disease to enroll in clinical research trials.

So many action plans can be undertaken by patient support groups.

And two departments I wish NITI Ayog is able to use its goodwill in bringing together these two departments the department of empowerment of persons with disabilities and the ministry of cooperation if these two departments support the PSGs

The self-help if we can treat them like Cooperative with the help of Department of empowerment of persons with disabilities.

It will go a long way self-help groups which have been launched by me in city of Indore have been related to many neurological diseases.

* I have faced obstacles it is not easy patients and caregivers are often not interested. They can’t imagine how such groups may help them and others. They get bored. The challenge is to make the activities of PSGs interesting and look worthwhile and that will happen if Government of India supports them as a on a policy level with the help of those two Ministries then it will happen.

Then one of the last points will be advocacy training workshops for neurologist and leaders of patient support groups.

* I have created syllabi and training modules for potential advocates and we should also have sheltered workshops at every District level what are sheltered workshops these are special places special work environment which offer employment and Vocational Skilling for people with disabilities and they gain some experience they earn some money and they increase their self-esteem so every district should have a sheltered workshop so that the reskilling of persons with disabilities can be achieved.

So a few examples of legislation also so legislation at state level and at National level can go a long way for example

1. Mandating the use of crash helmets for motorbike riders.

2. Launching a national epilepsy control programme. if can pass an act for epilepsy control program it would be great.

3. Stroke Care Act making Provisions for emergency stroke care up to county level district levels.

4. More scientific and updated definitions, and quantification of disability due to neurological diseases.

5. For various disabilities mandating the establishment of district level sheltered workshop so many things can be achieved with the help of legislation.

So finally what do I bring on the table?

1.) I bring health literacy content in Hindi and

2.) I would like to emphasize that such content in any Indian language Hindi and any Indian language. It would be much easy to get adopted and translated into other Indian languages as compared to if you start from English so English to Bengali would be a bit difficult rather than Hindi to Bengali and something like that I bring with me skills to create more content.

3.) I bring with me skills to build team of content creators

4.) Skills to launch and sustenance of patient support groups and

5.) Skills for advocacy training.

So, what is that I want to change?

*I want to make all stakeholders aware about the huge community burden of neurological diseases, and the gaps in the implementation of what can be done for them.

*I want to arouse a sense of ‘felt need’ and ‘desire’ to unfortunately that ‘felt need’ is missing from the minds of neurologist from the minds of patients from the minds of family members all is stakeholders are missing that felt need and

*I intend to kindle the dormant inherent skills of advocacy in neurologist and lay volunteers.

Thank you very much

Thanks for your kind attention

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