Download the latest newsletter on the CPC Project in the Maharashtra District of India – January 2014
The latest news from India – April 2013
The Children’s Palliative Care (CPC) Project in collaboration with the Department of Palliative Medicine, Tata Memorial Centre, Mumbai organized a 1 Day Workshop on Paediatric Palliative Care on 5 February, 2013. Around 90 participants (Paediatricians, Doctors, Nurses, Social workers and volunteers attended the workshop. The Workshop was conducted by a team of International Faculty. The workshop was a first step to creating awareness in CPC among health professionals in all fields.
CPC has also launched its 1st Edition a “Training Manual on Paediatric Palliative Care” a tool and guide for Health Care Professionals working with Children and Families. This was formally inaugurated and released on 5 Feb, 2013.
Dr. Mrunal Marathe, Counsellor CPC secured the 1st place in the oral presentation on “Understanding and awareness of a child regarding his/her life threatening/limiting conditions” represented at the IAPC CON Feb 2013 at Bangalore.
Lokmanya Tilak Muncipal General Hospital, Sion has set up a separate Paediatric Palliative Care OPD which was inaugurated on 23 Feb, 2013 for providing Palliative Care to children with HIV and their families. Ongoing activities and FGD’s are conducted with children and caregivers.
The Children’s Palliative Care (CPC) Project set up its OPD at the Mahatma Gandhi Mission Hospital (MGM), Kalamboli. This was formally inaugurated on Wednesday 13th March, 2013 by esteemed Representatives from the Medical Fraternity & Staff at MGM.
Children with various conditions like Cardiac, Respiratory, Neurological illnesses, HIV, Thalassemia, CP, MR are following up with the hospital. This is a separate hospital unit at Kalamboli for Women and children established since 1990. The hospital also has a neonatal care unit with all the facilities. It has also a rural outreach programme.
CPC has made a Documentary (20 Min Film) on Sensitizing Govt/ Stakeholders/ Health Professionals and general public to raise awareness about CPC. A short 2 min clip has also been prepared
The Maharashtra State government comes up with Palliative Care Policy a detailed article has been published in the Indian Express on 13 March, 2013 about the Maharashtra Govt, Dept of Health to take up this initiative and support Palliative Care which is to be implemented in 6 districts through the NCD Program, currently Palliative Care is being implemented at Jawhar and Igatpuri through Refresher Trainings and Train the Trainers for all cadres – Doctors/ Nurses/ ANM’s & ASHA Workers. This has been achieved through ongoing facilitation and advocating with Govt. Officials at various levels at both State and Central level. The stakeholders meeting are arranged every quarterly to review the actions taken and plans for further interventions.
Meeting with Representatives from Ministry of Women & Child Welfare, has facilitated a proposal draft for a Sponsorship Scheme which has been approved for Children suffering with a Life Limiting illness for Supportive Care through Rehabilitation of children and Family, which shall be under the guidance of the Ministry of Women and Child Development. A sponsorship of Rs 1000/- per month per child and family shall be subject to the conditions laid down in the ICPS Implementation plan. This is the first scheme to be initiated in collaboration with a Hospital. This will be subsequently implemented in various other hospitals also.
Children and families were empowered through Magic Show at Wadia & Sion conducted by a group of physically challenged. Awareness sessions were also conducted sensitizing parents about CPC.
CPC as a model site was visited and observed by a group of Paediatricians from 25th – 28th March, 2013 from Assunta Palliative Care Centre (ASPACC), Malaysia
ICPCN in collaboration with the Tata Memorial Centre, Parel Mumbai is hosting the 1st International Conference in India, Mumbai “Transforming Children Palliative Care from Ideas…to Actions” from 10 – 12 Feb, 2014.
The Tata Memorial Hospital is supporting the Children’s Palliative Care project with their mentorship. International Childrens Palliative Care Network (ICPCN), Department for International Development (DfID) and Help the Hospices (HtH) are the partners of the project.
Sites: A Service Delivery Approach
The following sites were identified for implementing Palliative Care
Lokmanya Tilak Municipal General Hospital (L.T.M.G.H) Sion, Mumbai The Regional Paediatric AIDS Centre at LTMG Hospital is a national Centre of Excellence for Paediatric HIV and has around 1785 registered children. The aim is to provide Palliative Care with an holistic approach including Psycho-social care for Children with HIV. More than 40 children have been included in CPC and have been provided various types of interventions.
Jawhar Cottage Rural Hospital,Thane: Meeting with the Health Minister of Maharashtra was instrumental in getting this site for training and awareness on CPC in the rural part of Maharashtra. The program is Community based. ASHA Workers of NRHM project act as a liason for referral of patients from community to PHC’s in collaboration. The doctors and Health care workers have been trained in Palliative Care
Objectives and accomplishments to date
- Advocacy for CPC by adoption of Paediatric Palliative Care Policy by the Government (Involvement of National & International Organizations & Health Ministry)
- Desk review of need and statistics for Childrens Palliative Care in Maharashtra is being done. The aim of the review is to find out the chronic disease burden in children, and the support, treatment and medicines available to them. A fact sheet on HIV in Maharashtra was prepared
- A draft of Maharashtra Palliative Care Policy was formulated with IAPC-Maharashtra for advocating with various government departments.It was presented to Mr Suresh Shetty, Minister for Health and Dr. Vijaykumar Gavit, Minister of Medical Education and Horticulture. Dr Gavit was requested to be a Champion for the cause.
- A meeting was held with Additional Municipal Commissioner Manisha Maiskar and Dr Sandhya Kamat,Dean,Sion Hospital for setting up Palliative Care Units in Municipal and Tertiary Care Centres.
- A meeting was held with Dr. Sandhya Kamat – Dean Sion Hospital and HODs from various departments of Sion Hospital to deliver Palliative Care as a Primary Care service as well as training of Doctors/ Health Care Workers.
- Various work groups have been formed for Advocacy. (With Dr Leena Gangoli and Dr Roy, BARC Hospital, Sion Pediatrics and other departments, Jawhar Cottage Hospital, Mr Manek Daver, Spenta Communication, NGOs).
- Co-ordination was done with Indian Association of Paediatrics (IAP) and Mumbai Academy of Paediatrics for CME Training in Palliative Care for Paediatricians in Childrens Palliative Care.
- Meetings with MDACS and MSACS were held to schedule Sensitisation Lectures, for Palliative Care in HIV for Counsellors and doctors.
- A draft of Child Protection Policy was presented to the Director of Tata Memorial Hospital.
- Press meeting was arranged with Dr. Muckaden, Ms.Joan Marston, Dr Anilkumar Paleri and Ms Kate Tattersal for emphasizing the current situation of Palliative Care for Children in India. An article was published in DNA newspaper on 15th Oct 2011.
- CPC Press Club Meeting was organised for creating Media awareness in CPC.
- 21 Journalists attended the Press Meeting. Articles were published in December 2011 in
- Loksatta, Lokmat and Pudari (Marathi) and in January 2012 in Midday.
- Awareness talk was delivered on Palliative Care concept for radio broadcasting. Talk was broadcasted on Akashvani- Asmita Channel on 19th December 2011.
Training and awareness to Doctors, Nurses, Social Workers, Health Care Professionals, Volunteers and NGO’s in Knowledge, attitude and skill to deliver supportive care to children:
- Training material for Jawhar (Rural Site) has been developed for creating community awareness.
- Case Record Forms for Sion and Jawhar based on Patient Demographics/ Social & Psychological Assessment/ Home Visit/ Clinical History/ Examination/ Nursing Assessment/ Follow – Up/ Intervention have been developed.
- Training for doctors and health care workers was conducted for Jawhar (Rural Site) .
- Indian Association of Palliative Care (IAPC) in collaboration with TMC conducted a Certificate Training Course in “ Essentials of Palliative Care” for Doctors and Nurses in June and November 2011.
- The Maharashtra Medical Council was co-ordinated for granting credit points for IAPC Training in Palliative Care with emphasis on Paediatric Palliative Care
Community awareness was conducted in various parts of Mumbai in collaboration with NGOs.
- Availability to pain relieving medication especially Morphine:
- Meetings were held with FDA officials to get Morphine license to Sion site & to get official letter that BAMS doctors can prescribe Morphine in Maharashtra.
- A GR of Govt of Maharashtra related to BAMS doctors prescribing allopathic medicines was obtained.
- Jawhar Site has got Morphine license.
Empowerment of children and families for improving Quality of Life:
- Focus Group Discussions have been conducted to have an understanding of needs, issues and psychosocial aspects of children and families
- Various programs were arranged in co-ordination with Sion and Tata Hospital involving children and families.(Support group, Christmas Party)
- Networking with orphanages and other NGOs was strengthened and children were referred for behavioural, psychological and medical problems.