Report: Success Story of Project Parivartan - Vanita secures the job of counsellor

MDACS feels proud of the success story of Project Parivartan, how the project has helped a Redressal Cell volunteer in finding a steady job as a counselor at an ART Centre despite not being very highly educated.

The very objective of Project Parivartan was to help PLHIV survive in our society and to help them access their rights.

Read the interview below to see how this has come about so soon after the Project Parivartan came about.

Background

Vanita Doiphode has recently been appointed as a Peer Coordinator at an ART Centre in KEM hospital. For her this feat is one of her biggest achievements so far and is excited about her new role.

With more than 5 years of experience as a PLHA counsellor and outreach worker; she started volunteering at the Redressal Cell in KEM Hospital in November, 2011. Volunteering at the Redressal cell was a novel experience as the Redressal cell concept was just started in 2011 by MDACS. Very soon, an announcement for the position of a peer coordinator at the ART Cell was made, and one of her colleagues (a counsellor affiliated with MDACS) urged Vanita to apply.

At first, although Vanita found this to be a great opportunity of growth within the ART domain especially for volunteers at the Redressal cell, she was apprehensive whether she would be considered for the position.

But with the help of her peers in the ART Centre, she mustered the courage and wrote an application letter and applied for the job. She was called for the interview and it was then that she realised that she was the only candidate with an SSC level education while the rest of the 12 candidates had an education level of above 12 Std. But she adds that as soon as the interview started, her nervousness disappeared and she spoke confidently about her experience and skills. She was selected on that same day for the position.

Vanita gives credit for her rise from a volunteering role to that of a peer coordinator to her other PLHA colleagues and MDACS for opening up such an avenue for her.

More than your average Mumbaikar…. 

At first glance, Vanita Doiphode is like any other, ordinary person in this city; working and travelling like a million others. But she has seen a lot more than your average Mumbaikar. And her day-to-day experiences are tales of struggle, hope and what can be called the triumph of the human spirit. Vanita is HIV-positive, and she has over the years, worked as an outreach worker and counsellor in government hospitals and testing centres, helping out others like herself who’re in need to care and support.

Prior to her role as an ART centre volunteer, she recounts her experiences in the PPTCT (Prevention of Parent to Child Transmission) centres in a suburban Mumbai hospital where her primary role was educating HIV-positive pregnant women about the disease and its risks to the child. Many of the women, she says, did not have any prior knowledge about HIV in those days, and thus, there were misconceptions about the disease that were very common. It was her job as the outreach worker to share her example with these women and motivate them to continue their pregnancies and to not take drastic measures like abortion or suicide.

One patient, she recalls, had hid her status from her family, and during her labour one hospital refused to operate upon her due to her HIV status. Vanita tactfully explained the complication to the woman’s family whilst not disclosing her status, and ensured that the hospital went forward with the delivery, and even submitted a formal complaint against the staff the next day. In another instance, she carried a two-day old baby to a city hospital as the local one was short of Nevrapine.

What motivates Vanita…

When asked about what motivates her to go out of her way and quite literally so, to help out these women, she smiles and says that it is the welfare of the child that motivates her.

While it is implausible and indeed impossible to blame anyone for becoming infected, HIV transmission to the child is avoidable and should be the responsibility of the parents as well as the hospital and medical staff. “Why should an innocent life suffer because of stigma?” She asks poignantly.

Challenges that she faces….

Not all of Vanita’s work can be seen through such rose-tinted vision, and she is quick to caution us against this. Self-stigma, she says, is even more dangerous than being stigmatised by society. Issues of morality block the need to question and the desire to come forward among HIV-positive people and this is a huge setback to efforts made by people like her. She says that by ascribing HIV infection to only sexual acts stigmatises the disease even more, and this adversely affects children and women who are HIV-positive.

However, she does not seem entirely pessimistic. “There is a great deal of change in perspective, especially among medical professionals and doctors. A decade ago, they were as ignorant as the common public was. But now they are coming forward and helping HIV-positive people by offering more than medical help, by way of counselling and advocacy.” In fact, it were such counsellors, doctors and outreach workers who helped her overcome her own stigma and got her in touch with positive people’s networks.

Her job as a peer coordinator is her hope…

“Charity is one thing,” she says, “job satisfaction, another.” Her profession allows her to interact with others, who like herself seven years ago, are in a state of confusion and in need of knowledge and guidance. A change in perspective is the need of the hour, in her opinion; this will counter both stigma and discrimination on many levels.

In conclusion, she states, both simplistically and profoundly, that “like ‘normal’ people, we too have the right to work, marry and have children and a family. Giving us ‘special treatment’ will only reinforce self-stigma. If we are assured of free first-line treatment, we are free to address other issues concerning our health, like having a healthy diet etc.” Other important issues, like economic ones, the requirement to fill the stomachs of oneself and one’s family are important considerations. And these questions can be addressed only once people like Vanita are assured of equal opportunity of work and leisure; to live and work as independent, ordinary citizens, and yet be involved in rather extraordinary tasks.

And simply put, this is the story of their lives.

Report: Redressal Cell and Saadhan Helpline - An Integrated Solution for PLHIV

IEC-MDACS has under its wing the Saadhan Helpline and the Redressal Cell. Both these services work together to bring about an integrated solution for PLHIV (People living with HIV).


Saadhan Helpline:

Saadhan helpline which provided HIV, AIDS and Family Planning related information and counseling to thousands of callers from India and abroad under the PSI banner during the last 15 years has been successfully transitioned to Mumbai District AIDS Control Society and has officially commenced operations from May 2, 2011 onwards.

The MDACS Saadhan Helpline has received more than 250 calls within the first month of operations and the current call rate is up to 400 calls per month. The Saadhan counsellor solves queries of the common man on HIV/AIDS. Counselling is free of cost and confidentiality of the caller is maintained.

Integrated Solution to PLHIV:

IEC-MDACS has brought together Saadhan Helpline and the Redressal Cell under its umbrella. This is to mainly make sure that PLHIVs get all help possible in getting the right treatment at the right time. While Saadhan Helpline listens to their problems and puts them in touch with the right people, the volunteers of the Redressal Cell co-ordinate with the Health set-up and PLHIV to give them maximum support.

The following is an actual case study without divulging the names of the people involved:

Case Study

Gender: Female              Age: 29 years
Marital Status: Single        Occupation: Service
Education: Graduate                Location: Mumbai
Source: MDACS- IEC material        

A distressed female had called up the helpline seeking help for her HIV positive brother. She stays with her old father and her brother. Being handicapped with a leg problem and also being the sole breadwinner, she was finding it difficult to manage things at home. Her brother’s uncontrollable aggressive behaviour and deteriorating health had become a major cause for concern.

A few years after being diagnosed as HIV positive, he had lost his job due to recurrent health problems. Since then he had become very aggressive, cynical and threw tantrums. His wife and child were also HIV positive. Unable to cope with his misbehaviour, his wife had left him taking their child with her. This incident had an even worse impact on him. Turning into a complete recluse, he started shunning people and had limited conversation only with his sister.

She also mentioned that although he had started ART at a government hospital, he stopped it later since he was upset that HIV positive patients were being discriminated at the hospital and was also worried about confidentiality being maintained. He had destroyed his reports too. Later, as her brother refused to step out of the house, the caller arranged for ART from a private doctor. The doctor also paid home visits to treat her brother’s opportunistic infections. However, the caller’s brother misbehaved with the doctor too, resulting in discontinuation of ART.

At the time of the call, the caller’s brother was having several opportunistic infections and was not able to retain food as he was continuously throwing up. His sister would get the medications for him from the same private doctor and he would take the medications only if she personally gave him which was not always possible.

The caller wept throughout the call, overcome by frustration and helplessness. Empathising with the caller’s situation, the counsellor explained the importance of prompt medical intervention, also informing her about organisations providing home based care and referred her to a PLHIV support group. The counsellor also provided referral of redressal cell’s volunteer (Project Parivartan) to facilitate the process of ART registration. The caller thanked the counsellor for her support and information.

Feedback received from the redressal cell volunteer:

After her conversation at the helpline, the female had called the redressal cell volunteer. She disclosed that she had been unable to establish contact with the PLHIV network. At her request, the volunteer agreed to visit their house and counsel her brother. Initially, her brother fought with his sister for calling the volunteer but later there was a change in his behaviour. The counselling served as a catalyst in changing her brother’s behavior whereby he became more open to his sister contacting the volunteer. The volunteer developed a good rapport with the caller’s brother and interacted amicably with him. Within a couple of counselling sessions, the caller’s brother volunteered to get admitted to the hospital. The redressal cell volunteer helped out in arranging for free ambulance service and admitting him into a government hospital. Currently, his treatment is underway at the hospital and he is due to be discharged soon. He still continues to interact amicably with the volunteer.

Conclusion:

MDACS is absolutely proud to show such a strong impact of bringing together the two services that function independently. Namely, Saadhan Helpline and the Redressal Cell have been brought together and they co-ordinate in such a way that it is totally solution-oriented and of great use to PLHIVs.

Report: STEPS TAKEN FOR FORMATION OF REDRESSAL CELL

After the guidelines for forming a Redressal Cell were approved, it was required to get in touch with the hospital authorities who were in charge of the ART centre.

PEOPLE RESOURCE is the most important thing while setting up of the Redressal Cell. And for this, we needed support from the ART centres. The staff-members of the ART centres were to form The Committee. Then, we required the support of the PLHIV Community Representatives who would become Volunteers at the Redressal Cell.

Thus, for the formation of the Cell, we needed to approach the stakeholders, namely, ART Staff and PLHIV Community.

And this is how we went about it:

1. Approach to the ART-In-Charge

We wrote to the ART-in-charge and invited them for a meeting at MDACS under the chairmanship of Hon. Project Director Dr. S.S. Kudalkar. The brief meeting lasted for 2 hours where the importance of setting up a Cell was explained clearly to the ART-in-charge. They contributed with their feedback and suggestions to enable a smooth functioning of the Redressal Cell. They also showed keen interest to support the Redressal Cell. The meeting was concluded with the decision that the ART-in-charge will send their representatives, i.e, the Medical Officer and Counsellor of the ART centre who will be representatives of the Redressal Cell Committee.

2. Sensitization Workshop for the Committee Members

A one-day workshop was conducted to explain the need for Redressal Cell to the ART Centres’ staff members.

Agenda for Committee training

Committee member details & ART Centres’ Weekly Committee Meeting Schedule

The Workshop was also represented by the PL-HIV community to initiate a healthy discussion so that the needs of the health centre and the community were addressed.

Conclusion: A Committee was formed to ensure the smooth functioning of the Redressal Cell. But the actual day-to-day affairs will be conducted by the volunteers. Hence, it became very important to train the volunteers who were from the PL-HIV Community.

3. 2-Day Volunteer Training

1st Day (September 5, 2011)

Inauguration: The 2-day training session was inaugurated by MDACS officials with a lamp lighting ceremony. In the opening speech it was mentioned how important the volunteers were in the functioning of the Redressal Cell.

Ice Breaker: It is very important that the participants take part in the workshop without any inhibition. That’s why some small games were conducted to break the ice. This made for a good start.

Objective of workshop: This was conducted by Ms. Vinitha Venkatraman, JD, IEC-MDACS, where the vision was explained clearly.

Introduction to Redressal Cell: Meena & Anthony are from the community and they play the role of Redressal Co-ordinators. It was their responsibility to co-ordinate with all the volunteers to set up the Redressal Cell at the ART Centres.

Medico legal Aspects: Advocate Nitu Sanadhya is from the Lawyers’ Collective. She ran everyone through their rights and how they can get access to Lawyers’ Collective in case of any discrimination in the family, workplace or society.

2nd Day (September 6, 2011)

BCC (Behavioral Change Communication): The volunteers have to do a very important thing. They have to bridge the gap between PL-HIV and Health set-up. They have to liaison with the various departments in the Health set-up and this requires communication skills. They were trained for the same. Ms. Genevi Fernandes was the lady who gave them the basic communication training during the workshop.

ART & Other allied services: If a PL-HIV needs treatment from other departments, there are chances of discrimination from the doctors there. That’s when the volunteers play a major role in liaison work and bring justice to the issue. Dr. Rankhambe is the consultant, ART, who co-ordinates with MDACS.

Report Writing & Documentation: The volunteers made accurate reports and documented everything that happened during these two days so as to ensure that everything will be carried according to the plans made during the workshop.

Vote of Thanks: There was a vote of thanks that was followed by the distribution of I-Cards to the volunteers.

PROJECT PARIVARTAN: for the positive people, by the positive people

Project Parivartan - Administrative Structure

This year MDACS saw the launch of Project Parivartan - for the positive people, by the positive people.

Project Parivartan is a redressal cell for HIV & AIDS, but it is a redressal cell with a difference. It is not just a forum to address complaints but to join hands with the system and the clients and create a strong healthy working environment and improve conditions on both sides - the health set up as well as the positive clients.

Background:

HIV infection is not the end of life. People can lead a healthy life for a long time with appropriate medical care. Anti-retroviral therapy (ART) effectively suppresses replication, if taken at the right time. Successful viral suppression restores the immune system and halts onset and progression of disease as well as reduces chances of getting opportunistic infections – this is how ART is aimed to work. Medication thus enhances both quality of life and longevity.

Adherence to ART is Critical

Adherence to ART regimen is therefore very vital in this treatment. Any irregularity in following the prescribed regimen can lead to resistance to HIV drugs, and therefore can weaken or negate its effect.

ART is Accessible to All 

ART is now available free to all those who need it. Public health facilities are mandated to ensure that ART is provided to people living with HIV/AIDS (PLHA). Special emphasis is given to the treatment of sero-positive women and infected children.

When is ART Given?

ART is initiated depending upon the stage of infection. PLHA with less than 200 CD4 (white blood cells/ mm3) require treatment irrespective of the clinical stage. For PLHA with 200-350 CD4, ART is offered to symptomatic patients. Among those with CD4 of more than 350, treatment is deferred for asymptomatic persons.  

Where are these ART Centres Located?

In order to make treatment more accessible ART centres are located in medical colleges, district hospitals and non-profit charitable institutions providing care, support and treatment services to PLHA. A PLHA network person at each of the ART centre facilitates access to care and treatment services at these centres. ART centres also provide counselling and follow up on treatment adherence and support through community care centres.

Present Scenario

There is an overload in the ART centres. That’s the reason why they may sometimes find it difficult to address all the clients patiently. But at the same time, the ones who tested positive may feel discriminated with the lack. The objective of Project Parivartan is to solve the problems for both of these groups – ART Centres as well as positive people.

Aims & Objective of creating a Redressal Cell

This is an initiative to establish a friendly atmosphere between the Public Service Provider and the Service Receiver.

Objective:

• Bridging between an ART Centre’s Staff and those PL-HIV who are registered at this Centre
• Educating PL-HIV to access ART and other Services
• Standardizing the quality of life of PL-HIV, by ensuring access to information
• Motivating PL-HIV to access their rights
• Reducing stigma and discrimination through redressal cell and creating friendly atmosphere at ART centre
• Sensitization of those PL-HIV for disclosing their status to their partner/faithful family member
• Involving more and more PL-HIV Volunteers by providing various training to become a part of peers for care and support programme.

Committee Members Formation:

1. 1 Redressal Cell Officer
2. 1 Care Coordinator
3. 1 Medical Officer/Nodal Person
4. 1 Counselor
5. 2 PL-HIV Volunteers
6. 1 NGO person

Responsibility of Members:

• Monitoring Complaint/Suggestion Box once in every 15 days
• Identifying Volunteers for Addressing complaint
• Encouraging and creating a friendly atmosphere at ART Centres and other departments
• Rapport Building with Hospitals’ other departments’ Staff and Officers
• Resolving minor disputes on the spot, bridging between Staff and PL-HIV
• Helping PL-HIV for writing complaint/suggestion if needed
• Maintaining records of complaints
• Weekly/15 days internal meetings
• Internal Meeting Minutes reporting to MDACS
• Helping PL-HIVs in other ways such as – Hospital OPDs; Hospital Admission, other referrals at the hospital and outside. For eg.: NGOs hospices; Educational Trust, Charitable Trust, Orphanages, Government Schemes, Ambulance Services, Medical Aid Centres, etc.
• Attending all meetings and trainings
• Maintaining confidentiality of PL-HIV and not to disclose any records to other departments, outsiders, any media, without the written permission of related person and higher authorities.
• Giving the Saadhan Helpline number to all PL-HIV

ART Centers Redressal Cell Unit

• 1 Redressal Cell Officer for 3 ART centres
• 8 Volunteers for each ART centre
• Working days/hours: Monday to Saturday (days and hours can be altered by MDACS)  10:00 to 1:00 pm (able to give more time of his/her services if needed)

Volunteers Guideline and Responsibility

• All Volunteers will work under the guidance of Redressal Coordinator. He/she will be responsible for ART centre’s coordination.
• PL-HIV Volunteers should be availing services from same registered ART centre.
• All Volunteers’ priority is to help, support PL-HIV and educate them for health seeking behavior and advocacy.
• All volunteers should be neutral while solving any dispute between PL-HIV and ART center related staff.
• Helping ART centre for smooth functioning and friendly atmosphere in Centre’s premises
• Helping PL-HIVs in other ways such as – Hospital OPDs; Hospital Admission, other referrals at the hospital and outside. For eg.: NGOs hospices; Educational Trust, Charitable Trust, Orphanages, Government Schemes, Ambulance Services, Medical Aid Centres, etc.
• Rapport building with registered PL-HIV, Counsellors, H.O.D, other ART staff, other related OPD seniors and (Inward Doctors, Nurses, staff), department of  X-Ray, USG, MRI, all routing testing, Medical Social worker etc..
• Volunteers should follow rules and guidelines of particular ART center, Hospital and MDACS.
• Volunteers should also follow administration guidelines like: Maintaining attendance register, complaint register and account register.
• Volunteers should also look for the timely function of complaint/suggestion box.
• Volunteers should also learn to write weekly/monthly/quarterly/yearly reports.
• Volunteers should also learn to write case history
• Volunteers should be able to empower PL-HIV and affected people by peer counselling, group discussion, providing other related information regarding government schemes.
• It is compulsory for all volunteers to attend all trainings and meetings organized through MDACS related redressal cell.
• Working days/hours: Monday to Saturday (days and hours can be altered by MDACS) 10:00 to 1:00 pm (able to give more time of his/her services if needed)

Report: ‘MY FRIEND PINTO’ STARS EXTEND THEIR SUPPORT FOR VOLUNTARY BLOOD DONATION

Poster for RRC - placed at colleges

This report is regarding the tie up that MDACS had with the Stars of My Friend Pinto.

On the occasion of the International Youth Day, MDACS decided to tie up with Prateik and Kalki Koechlin, the actors starring in My Friend Pinto, to promote Voluntary Blood Donation. This strategy was used mainly because our target audience was the youth who could so relate to these young stars.

About Voluntary Blood Donation:

Voluntary blood donors are the cornerstone of a safe and adequate supply of blood and blood products. The safest blood donors are voluntary, non-remunerated blood donors from low-risk populations.

For a safe blood service in our country, where comprehensive laboratory tests are neither possible nor pragmatic, it is best to switch over to 100% voluntary donations, as it is now established that only voluntary non-remunerated regular donation is the safest. Thus, one of our key strategies to enhance blood safety is to focus on motivating non-remunerated blood donors and phasing out even replacement donors.

Who is a Voluntary non-remunerated Blood Donor?

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1. A person who gives blood, plasma or other blood components of his/her own free will and receives no payment for it, either in the form of cash or in kind which could be considered a substitute for money.
2. "Voluntary" blood donation refers to "unpaid, non-remunerated" blood donation.
3. An altruistic donor who gives blood freely and willingly without receiving money or any other form of payment.

Target Audience: YOUTH

Objective:

• Reach out to the Youth
• Remove shyness and hesitation surrounding condoms
• Raise awareness about HIV
• To reach the maximum number of people possible
• The tie-up was initiated in those areas where our target audience have maximum exposure resulting in more number of people getting the message

What we did:

• We went into a partnership with the film makers of the movie MY FRIEND PINTO.
• We shared all possible communication platforms with them. While they promoted the film amongst the youth, the stars Prateik and Kalki carried the message of Blood Donation to the youth.
• Known faces like the stars of the film go a long way in spreading the message and also help retain it among the youngsters of today.

Media used for promoting this event:

1. Posters for RRC


These were put up at colleges that were tied up with the Red Ribbon Clubs (RRCs) to promote voluntary blood donation. More than 100 colleges participated in this event.

2. Print Ads

These were given in the following newspapers that have a large readership.

               a. Bombay Times
               b. DNA
               c. HT

3. Hoardings

Eight hoardings both in English and Hindi were placed at strategic points to catch the attention of the public. These had the pictures of the movie stars – Kalki & Prateik – promoting Voluntary Blood Donation.

Here are the pictures of some of the hoardings placed in strategic positions around Mumbai:

1. Kurla West: Outside Railway Station; 2. Dadar West: Outside Railway Station near Platform 1;
3. Mumbai Central near Maratha Mandir Theatre; 4. Bandra West: Outside Railway Station;
5. Andheri West Railway Station: Track-facing; 6. Malad West Railway Station: Track-facing

IMPACT:

• Was able to reach a wider audience with a limited budget
• Was able to leverage the alliance by implementing an effective and Cost Efficient campaign
• Higher visibility due to association with known stars

Report: LAUNCH OF SAADHAN HELPLINE AT MDACS

Saadhan helpline which provided HIV, AIDS and Family Planning related information and counselling to thousands of callers from India and abroad under the PSI banner during the last 15 years has been successfully transitioned to Mumbai District AIDS Control Society in April 2011. The PSI Helpline counsellors have been absorbed into the MDACS helpline programme. The MDACS Saadhan Helpline officially commenced operations from 2 May, 2011 onwards.

Origin of Saadhan Helpline

PSI initiated a manned HIV/AIDS helpline in 1994 with funding from the MacArthur Foundation at a time when access to information and counselling on HIV-related issues were largely unavailable.

In 2002, under the US AID-funded Operation Lighthouse (OPL) Project, the helpline was relaunched in a new set up with the latest computer software technology and branded “Saadhan” Helpline. Under OPL, the revamped helpline was successfully launched and promoted through the Balbir Pasha campaign - a groundbreaking awareness drive and influential call to action reaching over to two million people across Mumbai.

Support from Mass Media and Development Fraternity

Mass media ensured that the helpline had a sustainable caller inflow. Through innovative mass media - television campaigns, hoardings and newspapers, the helpline helped effectively reach vulnerable populations. In addition, through these campaigns, the helpline successfully counselled at-risk youth, a group that engages in significant high-risk behavior and holds numerous myths and misconceptions since they do not have access to correct information.

The Saadhan Helpline has had significant experience partnering with other organizations with regard to mass media promotion of the helpline. MSACS, AVERT Society, Johns Hopkins University, the Heroes Project and BBC World Service Trust have promoted the helpline through their mass media campaigns, so as to maximize utilization of available high-quality services and to avoid reinventing the wheel. The Heroes Project publicized the helpline number on the Star Television Network across Asia, as well as in some countries in the Middle East (UAE, Kuwait and Oman). In addition to a television campaign, the helpline number was advertised by Johns Hopkins University on billboards, buses and all printed IEC materials.

The Helpline at MDACS

With years of experience in provision of helpline services in India and the Mumbai Saadhan Helpline’s active collaboration in the HIV/AIDS field, Mumbai District AIDS Control Society (MDACS) showed keen interest for the helpline to be carried forward and received NACO’s approval to integrate the HIV/AIDS Helpline into MDACS.

PSI entered an agreement with MDACS for transfer of Helpline software and hardware instruments (server, EPBX etc) and PSI transitioned the Saadhan helpline to MDACS (022-2411 4000) in April 2011.

There is technical assistance provided to counsellors by those experienced in the field of running an HIV AIDS helpline, training of counsellors and support for regular supervision and case discussions.

The PSI Helpline counsellors have been absorbed into the MDACS helpline programme.

There is a generation of mass media campaigns promoting the helpline all year round and the helpline will be incorporated in all campaigns and IEC materials in Maharashtra.

The MDACS Saadhan Helpline has received more than 250 calls within the first month of operations and the current call rate is up to 400 calls per month. The Saadhan counsellor solves queries of the common man on HIV/AIDS. Counselling is free of cost and confidentiality of the caller is maintained.

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