Dr. P. K. Gopal Receiving Padma Shri Award

Ref.:   (see Dr. P. K. Gopal Receiving Padma Shri Award

From: U Thakar, Mumbai, India

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Dear Dr. Salvatore Noto,

It is our great pleasure to inform you that, Dr. P. K. Gopal, President, IDEA (Integration, Dignity & Economic Advancement of people affected by leprosy) India and Chairman, National Forum, has been conferred the most prestigious PADMA SHRI AWARD on 22.3.2012 at the hands of the President of India.

Attaching herewith his biographical sketch and photograph while receiving PADMA SHRI AWARD.

We request you to upload this news on your mailing.

Thanks and regards.

Yours,

Mr. Uday Thakar, Mr. Venu Gopal and Mr. Bhimrao Madhale

Advisor, Trustee, Trustee

National Forum  

Maharogi Sewa Samiti (MSS), Leprosy Rehabilitation Foundation, India

Leprosy Mailing List – December 5^th, 2011

Ref.:   Maharogi Sewa Samiti (MSS), Leprosy Rehabilitation Foundation, India.

From: S. Amte, Warora, Maharashtra, India

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Dear Dr. Noto,

Maharogi Sewa Samiti is a non-profit organisation in Maharashtra State of India.  MSS was founded by my grandfather, world renowned leprosy activist, humanitarian and peacemaker late ‘BABA AMTE, way back in 1949 for helping leprosy afflicted people to enhance their livelihood capabilities through self-discovery and empowering them to contribute back to the society.  My grandfather Baba was the only person to receive UN Human Rights Award for the cause of leprosy.  He has also received several prestigious honors, like The Damian Dutton Award, Ramon Magsaysay Award and the Templeton Prize.

MSS has a firm belief in giving a 'Chance' and not just charity to the socially outcasts who have lost sense of self-respect.  It gives them opportunities to self-discover the worth of their hidden ability and thus eliminate their dependence on others.

MSS has been a pioneer in medical treatment and rehabilitation of leprosy patients in India.  We are proud to inform you that in June 2011, our organization has crossed a mark of benefitting 2.3 million marginalized people like the leprosy afflicted, people with disabilities and tribal populace through our constructive programmes.

Due to the qualitative enhancement in the lives of leprosy afflicted people with disabilities, MSS has been increasingly getting recognized internationally as an apex referral centre for leprosy rehabilitation.  This is evident with the fact that MSS received over one new leprosy patient each day at Anandwan, the headquarters, from various parts of the country and sometimes, the world.

Anandwan is perhaps the only experiment in the country where leprosy patients help others help themselves.  Leprosy patients produce various goods worth Rs. 40 million every year through various productive activities.  With the help of our cured leprosy patients, MSS now arranges various medical and surgical camps which benefit over 60,000 poor people from surrounding poverty stricken areas every year.  Anandwan dairy project has been able to generate 700 litres of milk every day.  Because of the relentless efforts of our people afflicted by leprosy, is been looked at as one of the most promising social businesses in the district.  It is a matter of pride that the non-exploitative, non-bureaucratic management system of MSS is being studied by various apex educational institutes that include civil services, IIMs, IITs, social science institutes, environmental science and agricultural institutes from all over the world.

We would like to be a part of LML and receive information about more such organisations in the world and explore the possibility of constructive association.  We would also like to explore the possibility of partnering with ILEP for livelihood promotion programmes with leprosy patients.  We cordially invite you to visit ANANDWAN sometime, our “Paradise of, for & by the Underprivileged” to see our inmates celebrate the birth of new life with great enthusiasm.
  
With warm regards,

Dr. Sheetal Amte

Development Officer
Maharogi Sewa Samiti

Warora

Maharashtra, India

IDEA newsletter Vol. 14, No. 1, 2010

Leprosy Mailing List –  March 12^th, 2011

Ref:     IDEA newsletter Vol. 14, No. 1, 2010

From:  Erlings J, Amsterdam, The Netherlands

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Dear Dr Noto;

In attachement is the above mentioned newsletter (PDF).

With kind regards,

Jiske Erlings

Information Officer

Infolep Leprosy Information Services

Postbus / P.O. Box 95005

1090 HA Amsterdam

The Netherlands

Tel: +31 20 5950530

Fax: +31 20 6680823

E-mail: J.Erlings(at)Leprastichting.NL

Web: www.leprosy-information.org

The legacy of Brazil’s leper colonies

Leprosy Mailing List,
June 17th, 2009
Ref.: The legacy of Brazil’s leper colonies
From: Both P., Apeldoorn, The Netherlands

Dear Dr Noto,

You may recall that I responded earlier to an e-mail exchange following mail published in LML written by Ms Elisabeth Poorman, which was about the use of words, in that case ''elimination of leprosy''.

I read the first pages of the above mentioned article (LML May 30th, 2009) written by Ms Elisabeth Poorman about the legacy of Brazil's ''leper'' colonies and I wonder why the term ''leper'' appears. If this is just a reference to a word/name of a colony used in the past and in the context of un-masking ill-intentions of that time?

In that case I can understand the use of the term, but in the text of the article the term ''leper'' continues to be used, even in the context of research done in 2005 - 2007. I just don't understand! Although my interest in ''leprosy'' was raised in the 60th, when I read a book in which the life of patients was described in a colony/leprosarium in Brazil in those 60th, I lost my concentration to read the article to the ''bitter'' end.

Can Ms Poorman assure me I should continue to read and find the change in terminology somewhere as a clue to the un-masking of ill intentions of former leprosy workers?

The book I read about leprosy in Brazil gave me a very high esteem of the persons involved in care! I am not sure whether you would want to publish this at LML.

If you wish you could forward my question to Ms Elisabeth to her e-mail address which I do not have.

Yours sincerely,
Piet Both
TLM Country Development Director

The legacy of Brazil’s leper colonies

Leprosy Mailing List,
May 30th, 2009
Ref.: The legacy of Brazil’s leper colonies (see attachment)
From: Moreira de Sousa A. C., Rio de Janeiro, Brazil

Dear Dr Noto,

Please find in attachment the paper “The legacy of Brazil’s leper colonies” by Elisabeth Poorman.

Best regards,
Artur Custodio Moreira de Sousa
Coordenador Nacional do MORHAN
TELEHANSEN 08000262001
Celular (21) 82263124

Elimination of Discrimination Against Persons Affected by Leprosy and their Family Members (2)

Leprosy Mailing List – October 4th, 2008

Ref.: Elimination of Discrimination Against Persons Affected by Leprosy and their Family Members (2) (see attachment)
From: Soutar D., London, UK
London 24 September 2008

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Dear Colleagues,
Following my communications with the Office of the High Commission for Human Rights regarding the important Human Rights Council Resolution 8/13 entitled “Elimination of discrimination against persons affected by leprosy and their family members”, the ILEP Secretariat has now received a copy of a formal letter calling for information to assist in the preparation of a report to the Human Rights Advisory Committee.

The letter (see attached link) calls for views and information on the following:
a) Information on measures taken by Governments to eliminate discrimination against persons affected by leprosy and their family members;
b)Studies carried out at a national level, including by civil society organizations and independent research institutions, on the existence and impact of discriminatory policies and practices related to leprosy in the area of human rights;
c)Views on the relationship between obligations arising out of international human rights treaties and de jure or de facto discrimination in relation to leprosy for the persons affected and their family members.
Any responses should be forwarded to the OHCHR (as indicated in their letter, to registry@ohchr.org or jsotomayor@ohchr.org by the 31st October, 2008. I would also appreciate if the ILEP Secretariat could receive copies in order to monitor the extent of the evidence being submitted. I believe this is a real opportunity for ILEP and their partners, especially those from organizations of people affected by leprosy, to provide the evidence which can help bring about real and meaningful achievements in tackling stigma and discrimination. I hope also that many of you will be able to participate in their proposed meeting in Geneva on January 15th 2009.

With best regards,

Douglas Soutar
Mr Douglas Soutar
General Secretary
International Federation of Anti-Leprosy Associations
doug.soutaratilep.org.uk
www.ilep.org.uk
Tel: + 44 (0)20 7602 6925

Elimination of Discrimination Against Persons Affected by Leprosy and their Family Members (1)

Leprosy Mailing List – October 4th, 2008

Ref.: Elimination of Discrimination Against Persons Affected by Leprosy and their Family Members (1)
From: Soutar D., London, UK
Dear Salvatore,
I hope this can be posted on the LML.
Regards,
Doug
London 22 September 2008


http://www.nippon-foundation.or.jp/eng/2jcahj000005bps8-att/8f0j6k000000wnel.pdf

Dear colleagues,

I am certain that many of you will have already received and read with interest the latest issue of the Newsletter of the WHO Goodwill Ambassador. The passing of UNHRC resolution (8/13) in June 2008 on “Elimination of discrimination against persons affected by leprosy and their family members” is a very important development and as General Secretary of ILEP I am eager that all those working in, or affected by, leprosy are fully involved in supporting States in taking the necessary steps to fulfill their obligations under this resolution. The article in the newsletter explaining the resolution indicates that governments should already be approaching people affected by leprosy in an information-gathering process and that there will be a meeting in December or January to exchange views among relevant actors.
Among the readership of the leprosy mailing list there are many “relevant actors” and I very much hope that this information-gathering process is seeking their views and, most importantly, those of people affected by leprosy and their associations.
I am trying to find out more information about the proposed meeting and would welcome any feedback you can provide on how the information-gathering process is being undertaken in your local situation.
With best regards,

Douglas Soutar

Mr Douglas Soutar
General Secretary
International Federation of Anti-Leprosy Associations
doug.soutaratilep.org.uk
www.ilep.org.uk
Tel: + 44 (0)20 7602 6925

“COPE” (client-orientated, provider-efficient)

Leprosy Mailing List – March 30th, 2008

Ref.: “COPE” (client-orientated, provider-efficient)
From: Awcock D., Phnom Penh, Cambodia

Dear Dr Noto,
I refer to Dr Ruth Butlin’s LML message dated March 21st 2008. The editorial and article from the BMJ do indeed make interesting reading and illustrate very clearly just how complicated the issue of participation has become.
I am not too concerned about the terminology –whether the people involved are patients, users or clients, or clinicians, providers or staff - these are matters of individual preference or particular circumstance. What I think should concern us more is the extent to which apparent confusion about the purpose and process of participation limits the usefulness and cost-effectiveness of studies such as the one so honestly described in the article.

Many staff have a very clear idea of 'what it is like to be a patient here', and they act on that knowledge where necessary and appropriate, but others have no idea at all. In my experience it is sometimes necessary to both give patients a voice and teach staff to listen. I have found that a framework called COPE can be helpful where patients are generally not very assertive or articulate.
COPE stands for client-orientated, provider-efficient and is a self assessment tool that can be adapted to a specific location and type of activity. The assessment is carried out by staff with the involvement of patients and their own managers. This means that the assessment addresses the needs of the staff (for training, resources, new policies, encouragement, whatever) as well as the needs identified by patients. No issues that concern patients or staff have to be excluded because they are outside the control of the staff. And the record of the assessment provides the evidence that it has been done and in what ways if any it was beneficial.

I have used COPE in a variety of settings and seen it lead to significant improvements in the patient experience and the job satisfaction of the staff but sometimes it doesn't work because it is the wrong tool for the particular situation or time. For anyone interested, more information can be found on the website www.engenderhealth.org including a free downloadable handbook.
Yours sincerely,David AwcockCambodia

Participation

Leprosy Mailing List – March 21st, 2008

Ref.: Participation
From: Butlin Ruth C., Bangladesh
20.02.08Dear Dr Noto,

Many leprosy projects nowadays recognize a need to have participation from “beneficiaries” at all levels in their undertakings (i.e. in planning, implementation, & monitoring). This is difficult in practice, and sometimes attempts are abandoned despite an ideological commitment to the concept.

It is not always clear what is meant by “participation”, and various terms are used for the individuals who are expected to “participate”: they may include past users of services & current users, even potential (future) users of the services, they may be referred to as “clients”, and may sometimes be regarded as “consumers”. How to measure “success” in facilitating participation or how to quantify the benefits of participation is debatable. We would do well to learn from others` experience, including the experiences of those who work outside the leprosy field.

In this context, I would like to draw attention of readers of the “leprosy mailing list” to a most interesting recently-published article by Fudge et al (1.) in the British Medical Journal, and the accompanying editorial (2.).

This article reports work with “survivors of stroke” who are a group who have much in common with leprosy-affected people, there fore I feel it is relevant even though it was carried out in England where the cultural and economic situation differs from that in most leprosy-endemic countries.

Thank you,

Yours sincerely,

C Ruth Butlin

1.“Assessing the promise of user involvement in health service development: ethnographic study”. Nina Fudge Charles D A Wolfe, Christopher McKevitt. BMJ (2008) vol 336, p 313- 317. (Also available on line at BMJ 29th Jan 2008, doi:10.1136/bmj.39456.552257.BE)
2.“Involving users in developing health services - representation is not enough: voices must be translated into action”. Gillian Craig. BMJ (2008) vol 336 p 286-287 (on line at BMJ 29th jan 2008, doi:10.1136/bmj.39462.59875.80)

New website against discrimination

Leprosy Mailing List – March 21st, 2008

Ref.: New website against discrimination
From: Custodio de Souza A., Pinto P. R., Rio Branco, Acre, Brazil

Dear Salvatore

We are pleased to inform that the website about Bacurau's work to fight discrimination against leprosy in Brazil it is already launched.
www.casadebacurau.com.br/br/nav.html

Best regards,

Artur Custodio de Sousa
Morhan National Coordinator
http://www.morhan.org.br/

Paulo Roberto Pinto
Coordinator of the Bacurau website project