Friday, January 21, 2011

The Downfall of Leprosy Expertise (to pauperism)

Leprosy Mailing List – December 9th, 2010

Ref.:   The Downfall of Leprosy Expertise (to pauperism)’
From: Both P., Apeldoorn, The Netherlands



Dear Salvatore,

Dr V. Pannikar described this so well, in his 5th of December LML contribution. Earlier I was thinking that leprosy expertise was at risk to dwindle, to fade away (with the old heroes/soldiers in leprosy!).  It seems to plummet.

Dr Francesca Gajeta in her entry of 8 December expresses her hope that ILEP [*] could look into this.  And ILEP has done that, tried to do that, and the ILEP bureau is in the best position to update LML [*] readers about that, for example about the proposal to develop an Advanced Course on Leprosy.

Apart from that we should not forget the important initiative of WHO and NLR [*] (and GLRA? [*]) to develop a Training Needs Analysis (TNA) and Capacity Building plan. This stands next to the Enhanced Global Strategy for Further Reducing the Disease Burden Due to Leprosy (2011 – 2015).  The effect of this will be seen, we hope, in the following years.  The authors of this TNA and Capacity Building plan are in the best position to keep us informed.

The Leprosy Mission International has considered the issue of the ‘downfall’ too.  We have done a training review among leaders of programmes we are supporting.  We concluded that the recommendation seems to be to focus more on training in-country than in international institutions.  I hope that this conclusion does not come across as that TLM [*] would like to do away with international training institutions.  The future of such international training in leprosy would need a careful consideration among all stakeholders involved.  From that training review we have developed a ‘Position paper on Preserving Leprosy Expertise through TLM Programmes’.  At the same time in each country supported by TLM we have asked the TLM country team to do strategic planning (as and for TLM input and impact) and to develop a capacity building plan from that or because of that.  In other words, as TLM, we are taking this issue seriously.

I believe many more ILEP members and others are concerned and have their thoughts and have planned actions related to the dwindling leprosy expertise.  If they haven’t yet, it is time to listen to the alarm bells.  We have raised the issue repeatedly during ILEP meetings, for example whether ILEP could find a way to monitor the capacity in relation to leprosy ‘world-wide’.  (And I suppose that the TNA may contribute to getting some idea about that worldwide capacity, if the outcome of National TNA’s would be put together and be repeated at intervals.  I do not think there are plans to do so.)
   
I have been reading the history of The Leprosy Mission recently.  At an International TLM Conference in 1953 someone considered the need in leprosy so great ‘as to be beyond the power of all the Churches combined to meet it, even if they had no other object of their compassion and service.’  And, at that same meeting the Medical Committee called ‘the attention of the authorities to the need in each endemic area of an appropriate representative body to plan, develop, and co-ordinate the work. … Governments should be represented on this body at the highest level …Only when government, missions, and other voluntary organisations, the community and the leprosy patients themselves recognize each their own responsibility …’

Leprosy expertise need to be maintained. The last patient has the same right as the first patient or as the millions recovered from the illness and consequences of leprosy. But what expertise, where and who (Persons affected - Leprologists – PHC [*] workers – Dermatologists and other specialists – community members - ….)? How many and how many of each in different places/countries? What (how much knowledge among different cadres; how much and what kind of knowledge and expertise)? When? And especially also ‘why’, to what purpose (‘eradication’, ‘a world without leprosy’ or as long as we do not have the tool to achieve that ‘further reducing’ and ‘sustainability’?). The Why will determine in what way and among and with whom knowledge and skill, in relation to leprosy, need to be shared and kept alive and in action.

Is there a forum at which, in relation to maintaining leprosy expertise, the what and where and who and how and when and why is discussed and possibly agreed upon for concerted action?

WHO developed its strategic plan together with partners. Part and parcel of this is the attention to maintaining leprosy expertise and devolving this to PHC and Persons affected by leprosy.  National Governments are in the process of developing their national plans, using the WHO plan as a blueprint and guideline.  There is a community of persons affected who believe they can and should play a role in relation to keep the knowledge and skills alive.

ILEP has developed a strategic plan with commitments like ‘promoting collaboration’, ‘co-operation’, ‘stimulating support’ and ‘monitoring the global leprosy situation and attempting to identify unmet needs’.  Voluntary organisations like TLM and other ILEP members must have strategic plans, either internationally or within the various countries.  Donors are offering opportunities.  Researchers and training and research institutions have their plans and wants.

Do we need to get an overview of all this and identify the strength and weaknesses, the opportunities and risks/threats (a SWOT)?  One threat perceived is the loss of expertise.  What expertise?  Are we talking about leprologists only, (leprosy) researchers?

What and where and who and how and when and why?  What do we know about the present situation and will we able to agree on what to be desired and how to get there? Who is going to monitor and who is going to respond?

Dr Piet Both
The Leprosy Mission Int
Country Development Director

[*]
GLRA = german leprosy relief association
ILEP = international federation of anti leprosy associations
LML = leprosy mailing list
NLR  = netherlands leprosy relief
PHC = primary health care
TLM = the leprosy mission

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