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Report:Neuromuscular Symposium under Neuromuscular Disorders Subsection,Mumbai,August 8 & 9,2015

Date: August 8-9, 2015
Venue: Hotel Taj Land’s end, Bandra, Mumbai.

The neuromuscular symposium took place on the 8th and 9th August, 2015. The activity was organised by the neuromuscular subsection of the Indian Academy of Neurology and Bombay Neurosciences Association.

The program was designed for the postgraduate students of DM in Neurology and young consultants in neurology. Faculty consisted of Prof M D Nair, Prof Matthew Alexander, Prof A K Meena, Prof Sandeep Pal, Prof Mehar chand Sharma, Prof S V Khadilkar, Dr Ashok Sirsat, Dr Rajesh Benny, Dr Rakesh Singh, Dr Shrikant and Dr Prajakta Deshmukh, Dr Alika Sharma, Dr Lajitha balkrishnan and Dr Arthika. Sessions were attended by approximately 160 postgraduate students and consultants, who had assembled from all over the country. The format was a mixture of didactic lectures, practical clinical and electrophysiological topics and case sessions. The case sessions became interesting with the involvement of all the faculty members.

Organisers express their gratitude to the Indian Academy of Neurology, neuromuscular subsection, Bombay Neurosciences Association, esteemed faculty, management of Hotel Taj, educational grant by Unichem Laboratories and all the enthusiastic participants.

Satish Khadilkar and Vinod Puri,
Neuromuscular subsection

Report: Symposium on Neurorehabilitation, under Neurorehabilitation subsection of Indian Academy of Neurology, Mumbai, July 25 & 26, 2015

Neurorehabilitation is a complex medical process of diagnosis, assessment, acute and long-term management of people with complex neurological disabilities – physical, psychological and/or cognitive.   It aims to aid recovery from an injury to the nervous system and to minimise and/or compensate for any functional alterations resulting from it.  The individual is supported to achieve their maximum potential for physical, cognitive, social and psychological function, participation in society and quality of living.  It is a patient-centred, iterative, goal-focused learning process to optimise functional recovery, disability management and adaptation to loss and change.

Neurorehabilitation requires an interdisciplinary team of experts comprising clinicians trained in rehabilitation medicine, nurses, physiotherapists, speech and language therapists, occupational therapists and clinical psychologists. 

The conditions commonly treated by neurorehabilitation include stroke recovery, brain injury, cerebral palsy, Parkinson’s disease, multiple sclerosis, post-polio syndrome and Guillian-Barré syndrome.

The required training programmes in all disciplines for health professionals have not been widely introduced.  Poverty breeds illiteracy, and patients have no knowledge of what rehabilitation they need.  The rehabilitation program are not uniform in providing service to patients and vary from country to country and even intra country , The  lack of will to follow the protocal and data keeping make it worse hence no research papers are published inspite of good clinical work. 

IAN is a good platform to develop neurorehabilitation services in India as almost all patients with neurological disorder are seen by the neurologist a proper guideline and direction in neurorecovery for the patient will be key and this sub group could be the one to help develop these services in developing country like India.

The inaugural meeting was held in Mumbai on 25-26th July which was done by the president Prof Arabinda in presence of Past president MM Mehndiratta and Treasurer Dr.Nirmal Surya.
The convenor of the group is Prof Subash Kaul president elect and co convenor will be Dr.Anupam Gupta, from NIMHENS
Thanks and Regards

Report: Indian Academy of Neurology - Expert Group Meeting on Stem Cell Research in India, Gurgaon, Haryana, August 22 & 23, 2015.

The proposition to use stem cells for amelioration of neurological disorders with limited or no options for disease modifying agents, has aroused considerable enthusiasm as well as sceptism in the country. A number of research groups, many of them members of the IAN and others have pursued basic research and trials with great enthusiasm. At the same time, a number of centres claiming to be a resource of stem cells and indiscriminate therapeutic use without adequate ethical concerns have mushroomed. As neurologists, we are confronted by enquiries from patients with a number of neurological disorders. The developments demand provision of accurate information regarding the safety and efficacy of (or lack thereof) stem cells approaches, availability of resources in India and the associated ethical issues.

An Expert Group Meeting was held with Prof. M. Gourie-Devi in chair to take stock of developments in this area with the intention to develop a consensus statement for practicing neurologists. The aims of the document is to provide neurologists with an up-to-date account of the current status of preclinical and translational clinical research in India, encourage the formation of research groups and at the same time to identify potential themes for future research and to apprise the neurologists of the framework within which they can develop research approaches or counsel patients embarking upon this investigational technology as a means of amelioration.

A basic tenet that emerged is the stem cell approaches are purely investigational (translational research) as of now. Hence, research-regulatory bodies including the Indian Council of Medical Research and the Department of Biotechnology prefer to use the term, “Stem Cell Research” instead of “Stem Cell Treatment”. At present, the only stem cell approach that is approved of as a treatment is Hematopoetic stem cell treatment of various haematological disorders. This should be made clear to all patients either seeking information or opinion about stem cell approaches to neurological disorders or proposing to subscribe to such approaches.

Stem cell research is currently being undertaken only in selected institutes across the country. These institutes are required to maintain rigorous oversight from the ethics standpoint at both local and national level. At a local level, besides the institutional ethics committee (IEC), it is mandatory to constitute “Institutional Stem Cell Research Committee (ISCRC)”, specifically for overseeing stem cell research. Early stage translational studies (including animal research) are referred to the National Advisory Committee on Stem Cell Research (NAC-SCR) and late stage translational research (pilot and Phase 1 trials) have to be approved by both the NAC-SCR and DCGI. National guidelines for stem cell research developed by Indian Council of Medical Research and Department of Biotechnology (2013) provide the framework.

What happens when a patient or her/his family member insists on undertaking stem cell treatment. There are no established protocols to deal with such situations. The cases should ideally be referred to an ISCRC. The ISCRC then might seek a report from the treating physician and also request independent physicians to evaluate the patient’s need. The Committee can then take a decision whether to proceed with the intervention of not and also institute a safety monitoring committee comprising of independent physicians other than the treating physician to monitor the safety of the interventional procedure.

The regulatory oversight might seem to be a little frustrating but is necessary to prevent misuse. It is the responsibility of both stem cell experts and practicing neurologists to tackle this social issue for the benefit of mankind.

Composition of Stem Cell Expert Group
Dr. M. Gourie Devi, Chairperson, New Delhi
Dr. Geeta Jotwani, New Delhi
Dr. Sudesh Prabhakar, Chandigarh
Dr. Kusum Verma, New Delhi
Dr. Alka Sharma, New Delhi
Prof. M. V. Padma, New Delhi
Prof. Neeraj Jain, Manesar
Dr. Gagandeep Singh, Ludhiana
Dr. Pramod Pal, Bangalore
Dr. Sujata Mohanty, Delhi
Dr. Akshay Anand, Chandigarh
Dr. Satish Khadilkar, Mumbai

Report:Indain Academy of Neurology,Indian Society for Critical Care and Indian Society for Palliative Care,Joint-Expert Group Meeting on "End of Life Care" Mumbai,August 15 & 16,2015

India does not have any comprehensive legislation covering end-of-life care and the medical decision making that is often required. We need a legal framework for clarity on many grey areas around these issues. This would include (a) Death by neurologic criteria (brain death): current legislation applies only to organ donation, not to death determination when the patient is not a potential organ donor. The withdrawal of life-support in such a situation is an ethically clear but legally grey area.  (b) End-of-life Advance Directives (living wills) and medical power of attorney or Living wills: These instruments that enable a person to document his wishes and values in anticipation of terminal illness are not legally recognized without an enabling legislation.  (c) Medical futility determination and hospital ‘do-not-intubate/resuscitate’ policies: Once futility of aggressive medical interventions care is evident, limitation of such treatment needs institutional mechanisms for clarity and closure.  (d) Persistent vegetative state: As in the Aruna Shanbaug case this remains a rare but tough question where a case-by-case approach can be used based on well established principles accepted world-wide. The courts would need to be involved only in the the event of dispute.

The Indian Society of Critical Care Medicine (ISCCM) has published End Of Life Care (EOLC) guidelines for India in 2005 and 2012. In 2014, the Indian Association of Palliative Care (IAPC) and the ISCCM produced a joint position paper with ISCCM on an integrated care plan for the dying (Myatra et al, IJCCM 2014, 18:615-35). But professional guidelines do not have the force of law for shaping individual and professional behavior and public policy. In a fractious, argumentative democracy any problem of fundamental social significance needs advocacy to flag and to bring it to public and political attention. Earlier this year, the IAN joined hands with the ISCCM and the IAPC to begin the process of preparing and pushing an End Of Life Care legislation for India. We believe that professional bodies as key stakeholders need to take ownership of this issue. With a well thought out action plan, we can help evolve informed public attitudes and government action.

The first meeting of ELICIT (End of LIfe Care India Taskforce) took place at Mumbai under the chairmanship of Dr RK Mani (ISCCM) on Saturday 15th and Sunday 16th August. The first session was planned as an orienting exercise. Invited speakers spoke about issues that we as doctors are not often aware about. Ms. Vinita Singh who explained how the Constitution of India enjoins us to work towards improving the lot of all citizens set the tone with an enlivening lecture. Mr. Suhaan Mukerji took us through the process of drafting, enacting and notifying laws. Dr Amar Jesani spoke on the interface between morals, ethics, guidelines and laws. The last speaker in the first session was Dr Gustad Daver who gave us tips on how to deal with elected representatives and government officials. Quite a few of our doubts about our capacity to undertake these projects were cleared and with an energetic discussion the session lasted 4 hours. The next session was on more familiar professional ground with Death by Neurologic Criteria (V Goyal), Advance Care Planning (RK Mani) and Medical Futility (J Divatia).

The next morning we started by drafting a resolution (box), which we propose to have passed in the GBM at IANCON 2015. A strategy meeting followed in which we discussed legal drafting modalities, funding and outreach to Government, politicians and the media. Breakout meetings thrashed out outlines of the proposed law on DNC, ACP and futility. The last hour saw a joint discussion by the whole group on the essential elements of this legislation.

All members of ELICIT realize that the way forward is likely to be both arduous and prolonged. Nevertheless we believe that our three societies have both an opportunity and a responsibility to provide the leadership that is needed on this critical issue. As individuals we must realize that all of us have a stake in an EOLC law legal framework that would let us take control of our last days as per our wishes and values. 

DR RAJ K MANI, CEO (Medical Services) & Chairman,
Critical Care, Pulmonology & Sleep Medicine,
Nayati Healthcare & Research Pvt. Ltd., Gurgaon
DR ROOP GURSAHANI, MD, DM. Consultant Neurologist,
PD Hinduja National Hospital, Mumbai

Every citizen has a right to dignity in death.
The Indian Academy of Neurology recognizes the vital importance of appropriate End Of Life Care (EOLC) to protect patients’ rights, professional integrity and societal interests. We hereby resolve to work toward establishing evidence based policies and processes for standardizing EOLC within Neurology in India.

We strongly urge the Government of India to create appropriate legislation that will enable us to provide uniform and best practice End of Life Care to every citizen of India.

Standing (L to R): Dr Vinay Goyal (IAN), Dr Shivakumar Iyer (President, ISCCM), Dr Jigeeshu Divatia (ISCCM), Dr Nirmal Surya (Treasurer, IAN), Dr Mary Ann Muckaden (President Elect, IAPC), Dr U Meenakshisundaram (IAN). 
Sitting (L to R): Dr Gagandeep Singh (Secretary, IAN), Dr Manmohan Mehndiratta (IAN), Dr Apoorva Pauranik (IAN), Dr Roop Gursahani (IAN), Dr RK Mani (ISCCM), Dr  Srinagesh Simha (President, IAP

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