Facilitative Counselling for better patient management in leprosy

Facilitative Counselling for better patient management in leprosy A sick person needs more than medicament. She/he needs to be told about the disease, its cause and consequence, the treatment and the expected end result and the behavioural adjustment required for facilitating early recovery or for living and dealing with long-term consequences. The medical professional has to remember that it is not the disease that is managed but the person with disease. Managing a person with disease requires more than skill, it is an art. It is often a challenge to deal with the physical, mental, social, economic consequences of the disease. Dealing successfully with a person with c h r o n i c d i s e a s e o r i t s consequence requires not only complete knowledge about the disease but also patience, p e r s i s t e n c e, p e r s u a s i o n, understanding and partnership. Some call this counselling. The word counsel is derived from Latin consilium which means 'consultation, advice'. A d v i c e d o e s n o t m e a n unidirectional prescription or order, but guidance offered with regard to prudent action. In a chronic disease it means change in the health seeking behaviour that enables a sick person cope with illness better and improve his/her health status. We often hear people referring to their doctors as 'good' or 'not good' or 'bad'. More than the diagnostic and therapeutic skills, it is the ability to understand, listen and guide that distinguishes a good doctor from a bad one. In fact, counselling is one of the most consequential tools in the armamentarium of the medical professionals. It is eminently useful in general but essential especially in managing persons with diseases which are chronic in nature or in consequence. Its main objective is to improve the health status of the individual by bringing about change in the health behaviour. It is intended to help the patient and family understand the disease, realise the factors influencing the management of the disease and its consequences and assist in developing a plan specific to the needs of the patient and family based on the psychological, social, cultural assessment performed at the time of diagnosis. There are four elements in counselling: relationship, information exchange, enablement or empowerment and joint decision and action. The whole process which is educational takes place in a social context. Relationship between the counsellor and patient is important. If it is passive it will not encourage the patient to share the problems and will not help in taking care of the associated concerns of the patient. The counsellor should make a skilled use of the relationship in helping the patient develop self-knowledge, self-esteem and the ability to take control of his/her own life. Therapeutic alliance is as important as therapeutic regimen. Establishing an ongoing relationship helps in understanding the illness experience of the patient which should be perceived as unique and providing suitable platform for exchange of information needed for better management of patient's condition. Counselling should not be provider-centreddirecting and ordering- where the patient is passive. It should be promotional or facilitatory. This does not involve direct transfer of information but enables the learner to construct information on his own. In the patient-provider relationship, patient is a co-operator in treatment and it is based on shared responsibility and shared decision making.

Facilitative Counselling for better patient management in leprosy 1-3 Report on the NLEP - Regional Review meeting for Southern States, Chhattisgarh and Orissa 3-4 Report on the NLEP - Regional Review meeting for Northern States 4-5 VIIIth Meeting of ILEP Member Representatives 5 DFIT-CME Programme 6 Brain Teasers 6 Ulcers - healed by self care 7-8 Facilitative Counselling for better patient management in leprosy - Contd. from page 1 The following points may be useful in developing effective counselling practice. 1. Know the disease and its consequences and how to respond clinically to different situations and consequences. It is also important to know when and where to refer the patient in case of need. 2. Know the person, the family and the social and cultural context. This is very important for understanding the person and the needs and in establishing and enhancing partnership. 3. Be aware of the cultural beliefs and be aware of local ethnic, regional and religious beliefs and practices. This is useful for charting a successful patient management plan. Suggestions and health teaching should always be within the cultural framework. 4. Knowledge transfer is essential but on its own it cannot change behaviour. Patient education is more than telling people what to do or giving an instructional pamphlet. It means being aware of the gaps in patient's understanding that may pose obstacles in the management. It helps in choosing the best option that is most likely to be successful. 5. Incorporate beliefs and concerns of patients. Allow the patient to open out. This will allow the suggestions and decisions to match patient's perceptions. 6. Inform the patient the purpose and expected effects of intervention and when to expect these effects. Desist from setting too ambitious a target to avoid disappointment and discouragement. 7. Suggest small changes rather than large ones in order to induce success and positive response. Those with confidence that they can affect their health are more likely to adhere to the plan. It can be enhanced through skills mastery, reinterpreting the meaning of symptoms (comparing the cause of cracks in the sole of the feet to parched, cracked farm land) and persuasion. 8. Be specific. Generalisation acts as a deterrent. Explain, demonstrate and confirm (self care). Give a pamphlet with specific details about the condition and required action with dos and don'ts. (Don't give a patient with ulcer in the foot also pamphlet for eye care). 9. Printed material that is given to the patient should be accurate, consistent with the views expressed during discussion (twice a day during counselling but in the material once a day is mentioned) and, reading level should be appropriate to the patient population. 10. It is a proven fact that it is easier to add new behaviour than to eliminate established behaviour. Always try to adjust the suggestions to introduce new behaviour rather than modify the present one for better acceptance. 11. Link new behaviour to old behaviour (do the self care activities twice a day before breakfast and dinner or do it in the morning when brushing teeth). 12. Get clear commitments from patients. What will you do this week. How long. How sure are you? 13. Use a combination of strategies- educational efforts, individual counselling, group sessions, written materials. This is better than single technique. Strategies are to be tailored to individual needs. 14. Involve as many staff as possible. A team approach leads to success. Responsibility is shared among doctors, nurses, pharmacist, peripheral health Contd. in page 3 2 UPDATE

Facilitative Counselling for better patient management in leprosy - Contd. from page 2 workers and other allied health professionals. Everyone should be able to provide consistent positive messages. There could even be counselling promotion committee to promote new ideas and staff commitment. 15. One should be always willing to refer in case of need. Referral sources include- community agencies, voluntary health associations, instructional reference books, videos, other patients (connect with a person with the same problem and is doing well). 16. It is very important to chart out a plan in the initial stage itself including the follow up process (by contact appointment and phone call). The purpose is clear- to evaluate progress, to reinforce success, identify and respond to problems. This improves effectiveness of counselling. Providerinitiated contact is more effective than patientinitiated phone calls. As a matter of fact, a well counselled patient is sure to gain better quality of life, is able to bring the disease under control and makes sure that the treatment has the successful outcome. It is also a proven fact that it has an economic impact-reduced cost for the patient and the service. Counselling is a very effective patient management tool. If used appropriately, it is sure to lead to successful outcome. The last word: to be a good counsellor one needs to have conviction, confidence and communication skill Report on the NLEP - Regional Review meeting for Southern States, Chhattisgarh and Orissa ILEP-INDIA /OCTOBER 2009 Udhagamandalam, Tamil Nadu - 20th & 21st August, 2009 The Regional Review meeting of Southern States including the States of Chhattisgarh and Orissa was held in Udhagamandalam (Ooty) on 20th and 21st August 2009. Out of the 8 States, 6 State Leprosy Officers were present. Programme officers from Kerala and Lakshadweep could not attend the meeting. Other participants in the meeting were from the ILEP, Govt. of India, WHO, NOVARTIS CLC project, Pasteur Institute coonoor, Medical College Coimbatore and district NLEP officials from salem district, Tamil Nadu. The meeting expenditure for organizing the meeting was borne by the ILEP. Main issues discussed and Recommendations 1) Supervision and monitoring is the key to success under the integrated set-up within National Rural Health Mission. State Programme officers may keep liaison with the Mission Directors, State NRHM to strengthen the supervisory mechanism and mode of supervision in the state. 2) Even under the Integrated service delivery by the General Health Care staff, some essential nuclear staff are required who can provide back up support to the programme to maintain quality services. To provide long term training as in the earlier days for selected categories of persons may be considered by the Govt. to be reintroduced in the existing training institutions. 3) Involvement of ASHA has been reported to have helped new case detection particularly in difficult to reach areas in Orissa and hopefully improve treatment completion in these patients. Although ASHA training and their participation has been reported from other States, scheme of payment has not yet been implemented in few states. Payment of incentive will help in better motivation and should be started early as per the Govt. guidelines. 4) States have reported establishment of referral centres for management of difficult to diagnose and complicated cases, to provide DPMR and RCS services. It is necessary that such referral centres should be in all the district hospitals of the state where patients can be referred from the PHCs. Such District centres should have linkage with Tertiary level referral centres for further patient care. 5) It is the expected norms that all activities being carried out by different partner organizations for the NLEP and Leprosy patients should be in consultation with the State Govt. However, all these activities are not always reflected either in the State Annual Action Plan or the reports submitted by the States. All State Leprosy Officers and the partner organizations may work out coordination mechanism for preparing Annual Action Plan for the year 2010-11. 6) As the present ILEP support to the State of Karnataka is very minimal limiting to one or two training courses, it was decided that the SLO Karnataka and the State Coordinator (AIFO) discuss urgently and work out Action plan for the current year as well as for the year 2010-11. 7) Post of WHO State Coordinators in Tamil Nadu, Karnataka, Andhra Pradesh and Orissa have fallen vacant last year and Chhattisgarh is also to be vacant from September 2009. These SLOs strongly feel that non filling of these posts have affected the states progress very badly at Contd. in page 4 3

Report on the NLEP - Regional Review meeting for Southern States, Chhattisgarh and Orissa - Contd. from page 3 this juncture, when the DPMR, Referral system, Stigma reduction and CBR activities have been included in the NLEP. Posting of atleast one WHO Coordinator for the Southern States and separately for Orissa as well as Chhattisgarh may please be considered on priority. 8) Utilization of sanctioned budget were generally poor except for Andhra Pradesh, Chhattisgarh and Karnataka during 2008-09. States should constantly review expenditure by nd the districts and ensure better budget utilization. 2 instalment of the budget for the current year 2009-10, can be released if Statement of Expenditure (SoE) are submitted to the Central Leprosy Division early. 9) In view of the WHO global target of Gr. II disability rate in New Leprosy cases, POD care through self care practices and use of Self care kit cannot be overemphasised. Involvement of the ASHA may further help in strengthening spread of this activity. The Central Leprosy Division is examining this issue and may issue some guidance shortly. 10) The Integrated system of POD care model developed in Salem district, of Tamil Nadu found to be very useful involving NGO, Govt. Health Care system and local community where only material available in the household are utilized giving result of 60-70% healing of ulcers. However further replication of the model in remaining districts in the State is essential. Now that POD care is a part of the overall DPMR activities under NLEP and funds are available, Tamil Nadu may work out an easy to implement module with the NGO support for capacity building for the entire state as quickly as possible. Other Southern States may also consider similar POD module in consultation with the DFIT. Report on the NLEP - Regional Review meeting for Northern States Dehradun, Uttarakhand - 25th & 26th September 2009 The Regional Review meeting of Northern States was held in Dehradun on 25th and 26th September 2009. Out of the 9 States, 6 State Leprosy Officers or representative were present. Programme officers from Bihar and Jammu & Kashmir could not attend the meeting. Other participants in the meeting were from the ILEP, Govt. of India, WHO, NOVARTIS CLC project, Doon District Hospital and other NLEP officials from Uttarakhand. The expenditure for organizing the meeting was borne by the ILEP. Main issues discussed and Recommendations 1. From the presentations it was evident that new cases are still being detected particularly when any special drive is taken up. The situation in different identified areas need to be properly analysed for taking early action for detection of the hidden cases and treating them. 2. In low endemic situations it is essential to search for all hidden cases. Contact family survey should be encouraged against all M.B. and Child cases. Proper record should be maintained at PHCs/CHCs and reported regularly. 3. It is heartening to note that most of the states have started training of the ASHA in Leprosy and have utilized their services to suspect cases, referral to PHC and for completion of treatment in time. Payment of incentive to the ASHA should be started immediately, if not already done. 4. The States/UTs should properly estimate the treatment completion rate for each year and report to the Central Leprosy Division by July as per GOI guidelines. Report from Delhi and J&K for the reporting year 2008-09 may be sent on priority. Report from other States also shows that there is scope for improvement in TCR particularly in the urban areas. 5. Child proportion of new cases in Bihar is very high and validation shows correct diagnosis in most cases. The situation may need indepth examination to ascertain epidemiological implications. 6. Diagnosis of child cases particularly with single patch should be done with caution and may even be kept under observation for about 6 months, to avoid wrong diagnosis. High risk child cases with multiple patches should be followed up even after RFT to look for signs of neuritis and prevent disability. 7. In Uttar Pradesh, programme integration at the PHC level is not very good where involvement of the GHC staff is not complete. Dependency on the Vertical Leprosy staff (NMA/NMS) should be minimized and transfer of skill to the GHC staff should be encouraged to ensure future sustainability. 8. Implementation of DPMR activities has started but still need much improvement in maintaining proper records and also regular monitoring. Bihar had not made any procurement of MCR footwear for last 2-3 years for supply to the needy patients with insensitive feet. Urgent action needed in this regard. Contd. in page 5 Hard work always pays. The only reason why it sometimes doesn't is because it is not hard enough. 4 UPDATE

Report on the NLEP - Regional Review meeting for Northern States - Contd. from page 4 9. Monitoring of the programme and evaluation of the activities should be routinely carried out, for timely correction of deficiencies observed. Mobility for the District Nucleus teams should be given priority. 10. Almost all the State Leprosy Officers in the Northern region have joined recently or are due to be changed. Training of the newly joined SLOs should be organized in coordination with the ILEP organizations. 11. Fund utilization during the year 2008-09 was very poor in all the States except Chandigarh (UT). Better planning and expenditure management need to be ensured during the current year. VIIIth Meeting of ILEP Member Representatives Udhakamandalam, 19th August 2009 Conclusions: A. Coordination refers to bringing the expertise and resources of ILEP member agencies into a harmonious and efficient relationship in order to work together effectively. It means bringing together in a meaningful way all the support activities of ILEP member agencies in a State, District or area. B. The specifics and details of support activities of ILEP members in a State will be a part of the joint plan developed by the State in consultation with ILEP partners C. ILEP member agencies will participate in leprosy control in a State through various mechanisms including NGO projects, providing support to the programme in essential need areas, jointly agreed by the State and ILEP member agencies. D. ILEP member agencies agree to be involved in 23 states (the list attached). Each State will be coordinated by an ILEP member agency. The responsibility for coordination of a State would be for a period at the end of which it could be extended for another term by mutual agreement or it could be handed over to another ILEP agency willing to take over with the consent of all the members. E. For the remaining 13 States technical support from ILEP could be considered based on the need, urgency and availability of resources. Any request coming from any these States with endorsement from GOI will be processed by ILEP India coordinator and decision and possible mechanism of support will be worked out in consultation with other ILEP member agencies. F. Coordination of ILEP support activities will be vested with a person nominated by the State ILEP Coordinating member agency and he/she will be the point person for contact. He/She may not be placed in the State. G. Monthly report from representatives/consultants from participating ILEP agencies in a State will cover the planned/special activities in the following thematic areas: training, consultation meetings, programme review, advocacy and any other. The report should be sent to the State ILEP Nominee or designate (who represents the th interests of all participating ILEP members) by 5 of every month. The reports will be consolidated and sent to GOI th and ILEP agencies by the ILEP designate by 10 of every month. This will come into immediate effect (September 2009 report). H. Annual joint plan will be prepared for each of the supported states by the Coordinating agency in consultation with other ILEP agencies and the State. I. A participating ILEP agency will not withdraw support in the middle of a plan period. J. All ILEP member agencies will submit their annual activity report to the ILEP India coordinator by the end of January 2010 and the reports will be consolidated and ILEP India activity report will be published by the end of March 2010. K. It was also agreed that there would be monthly meeting of representatives of ILEP member agencies involved in a State to discuss progress in implementation of support activities. The meeting would be convened by the ILEP designate for the State. In addition, one day would be allotted by ILEP during their quarterly meetings for bilateral and multilateral discussions on activities related to State coordination. L. National level support Activities foreseen for the year 2010 include four zonal review meetings, one workshop, participation of facilitators from ILEP in training activities in different States and staff support to CLD. The total budget is about Rs.4 million (500000 per member). Printing of WHO Operational guidelines: ILEP Members agreed to the request of WHO for printing 1000 copies of operational guidelines. ILEP India coordinator would take the necessary action. Felicitation to Dr. Rajanbabu: Dr. Rajanbabu who was retiring from active service on 24th of August was felicitated by ILEP members for his unforgettable contribution to the strengthening of ILEP federation in India. Dr. Krishnamurthy spoke of his kind demeanour and benign disposition. Members wished him the best in life. List (proposed) of ILEP agencies with States (23) for coordination with effect from January 2010: AIFO NLR DFIT GLRA Fairmed Lepra TLM Assam, Meghalaya, Arunachal Pradesh Delhi, Jharkhand, Uttarkhand, Uttar Pradesh Bihar, Karnataka, Andaman & Nicobar, Kerala Tamilnadu, D & N Haveli, Gujarat, West Bengal Goa, Nagaland Andhra Pradesh, Orissa, Madhya Pradesh Maharastra, Chattisgarh ILEP-INDIA /OCTOBER 2009 5

Endowment Prize Examination-2009 As a part of CME Programme, DFIT organized Endowment Prize Examination on Leprosy for the undergraduate Medical Students in Tamilnadu. Totally 286 students registered for theory examination (272 from 9 Medical Colleges under Dr. MGR Medical University and 14 from Sri Ramachandra Medical College) which was held in the respective Medical Colleges on 9th July, 2009. Out of 286 students enrolled, 193 students actually took the examination (179-Dr. MGR MU+14-SRMC). Answer sheets were evaluated by Dr. Vijayakumaran, Director (Programme), DFIT and Dr. B. Sekar, Director, Pasteur Institute of India, Coonoor, Nilgiris. Out of 193 students who took the theory examination 39 (37(Dr.MGR MU+2-SRMC) (who had scored 70% and above) were selected and called for practical examination. Finally 15 of them (13-DR. MGR MU+2-SRMC) attended the the practical examination held at Holy Family Hansenorium, Fathimanagar, Trichy on 16th September 2009. Dr. A.A. Jamesh-Addl. Director of Medical & Rural Health Services (Leprosy), Tamilnadu, Dr. Rita Adaikalam-Director, HFH-Trichy, Dr.P. Vijayakumaran-Director(Prog.)-DFIT and DFIT-CME Programme Dr. Jacob Mathew-DPMR Consultant were the examiners for the practical examination. The score sheets have been communicated to the registrars of the respective Medical Universities. The highest scorer will be awarded by the respective universities. A CME programme on Leprosy was conducted at the Conferrence hall of HFH on the afternoon of 16th September 2009 for the Students who had attended the Endowment Prize Examination (practical). Dr.P. Vijayakumaran-Director(Prog.)-DFIT, Dr. Jacob Mathew- DPMR Consultant, Dr. Rita Adaikalam and Mr. Francis- Non-Medical Supervisor-HFH-Trichy covered various topics including epidemiology, POD & Self care. Different features and complications of leprosy were demonstrated and management discussed. Students were provided information on (ILEP supported) leprosy centres where referral services were available. Unscramble the words using hints 1. One of the cardinal signs of leprosy is _ (ESRSOLSOYNS) 2. Damage to ulnar nerve causes _. (CDWHALAN) 3. Damage to lateral popliteal nerve may result in _. (OPTOFDOR) 4. in leprosy is due to facial nerve involvement. (GLOPMAHSLOATH) 5. Lepra reaction/neuritis is treated with _ (RNSLOPENEODI) - Dr. P. Vijayakumaran, Director (Prog.) Damien Foundation India Trust. 6 UPDATE

Ulcers - healed by self care ILEP-INDIA /OCTOBER 2009 7

Ulcers - healed by self care