Dr Suresh Kumar Director Institute of Palliative Medicine WHO Collaborating Center for Community Participation in Palliative Care and Long Term Care

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1 Dr Suresh Kumar Director Institute of Palliative Medicine WHO Collaborating Center for Community Participation in Palliative Care and Long Term Care Kerala, India

2 Palliative Care is the active total care of patients whose disease is not responsive to curative treatment Symptom relief, Psycho social support & spiritual support % of the population need PC at any point of time Number expected to go up in view of the ageing population and rise in prevalence of NCD Most neglected component in the management of NCD 2

3 Patients with advanced diseases require continuous care and attention for the rest of their lives They are also in need of regular social, psychological and spiritual support in addition to the medical and nursing care Care should be readily accessible and available as close to home as possible There is enough social capital available to build a safety net' around these patients in most communities 3

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5 Area: 39,000 sq KM (1.18%) Population: 32 Million (3.43%) Out of 900 palliative care units in India, 825 (>90%) are in Kerala Coverage of more than 60% as against a national average of less than 2% Some of the regions in North Kerala have >80% coverage 5

6 Primary Health Care ( Alma Ata 1979) Involvement of the community through collective and social action (WHO 1980) Pain relief and palliative care programmes are to be incorporated into their existing healthcare systems: separate systems of care are neither necessary or desirable Ensure that equitable support is provided for programmes of palliative care in the home (WHO -1990) Establishing and strengthening national policies and programs including PHC (WHO 2008) 6

7 ! Initiated by professionals in 1993 as a humanitarian gesture about 30 projects by 2000! Neighbourhood Network in Palliative care in 2000 after analyzing the existing programme First paradigm shift community involvement! Volunteers from all walks of life including local politicians getting interested 7

8 ! Formal role of Local Governments Second paradigm shift in 2007 Started as donor Moved on to facilitation Deeper involvement through projects while retaining the community based character 8

9 Riding on the strengths of the region! Empowered local governments " participatory planning for 30%of state plan (potential for responding to local needs and for convergence)! Vibrant community - based organizations- eg; Kudumbasree covering three million women from low income group! Active Civil Society Culture of public action! Social service ethos of religious establishments 9

10 Network of trained volunteers in the community Support system by trained professionals, institutions and organizations Palliative care institutions as nodal centers 10

11 Regular, continuous emotional support for the patients and family Data collection/ needs assessment Social support to the patients Wound care, bedsore prevention, mobility Organisation & administration of palliative care services including fund raising 11

12 o The only government in LMC to have a palliative care policy o Emphasises home based care o Palliative care as a component of Primary Health Care Government machinery to work in harmony with community based organizations Legislation to allow Local Self Government Institutions to take up palliative care activities Allocation of funds Sensitization and Capacity building Policy makers Health Care Professionals General Public 12

13 Capacity building at the primary health care level Training Drugs and equipment Provision for home based care Integration between the primary health care and community owned services 13

14 Initiated in 2008 Provides the facilitating platform for development of palliative care services in line with Palliative Care Policy of Government of Kerala Learning from the experience of CSOs Nurse led home care programs by LSGI as primary network Government hospital based secondary and tertiary care network integrated with government health services Training centers in public and CSO sector Community participation at all levels Collaboration with CSOs and private sector wherever appropriate 14

15 Community owned initiatives in palliative care Home care programs by the local governments Government of Kerala s initiative to reorient the primary health care system to work closely with the community initiatives 15

16 825 palliative care units CBOs play the lead role in 200 Local Self Government Institutions with Primary Health Centers play the lead role in 625 More coming up 16 of the units as training centers More than 80,000 patients covered at any point of time More than 20,000 volunteers 30% of financial support mobilized from the community as micro donations 70% of the money comes from the three tier Government system 16

17 ! Natural motivation of volunteers - Humanitarian response of care and compassion to a distressing need! Wider support of organized community CSOs in Palliative Care! Professional protocols and paramedical out reach for home based care! PHCs, Government nurses and community engaged nurses! Technical support from the WHOCC! Coordination by Local Self Governments! Facilitation by State Government 17

18 Persons affected by! Advanced Cancer! Irreversible Stroke! End of life stage in old age! End Stage Systemic Diseases ( Cardiac, Respiratory, Renal)! Chronic Progressive Neuro Muscular Disorders! AIDS! Irreversible Head injury, Spinal injury, Paraplegia from accidents 18

19 ! Willingness of the Local Government! Stakeholder meeting of all groups! Development of programme concept! Training of interested volunteer group! Sensitive identification of the target group by the volunteers! Need assessment through house visits by home care teams and documentation of the need - by trained nurse, field staff, elected members, volunteers! Joint meeting for project formulation based on the need! Allocation of funds 19

20 Palliative care programs are currently on in 625 LSGIs Led by a trained community nurse (Recruitment and training supported by Kudumbasree mission Self help group for women) Encourages community participation Basic nursing and psycho social support provided at home Supervised by doctors in PHCs and supported by Palliative Care Centers run by CSOs The other LSGIs in the state to take up the program this year 20

21 ! Volunteer support Patients linked to trained volunteers in the neighbourhood who mobilizes psycho social support through home visits! Follow up home visits by trained palliative care nurse " Training of family in basic care of bed-ridden patient " Wound care " Catheter care and change " Naso Gastric Tube care and change " Special care like WCC lymphoedema - Montreal 2012 care and ostomy 21

22 ! Medical follow up through Home visits by doctors and Special Out Patient Clinic conducted once per week at the PHC medicine given for up to 4 6 weeks! Reference as per need to higher centers in Government and private sectors! Special support in response to issues raised in the monthly review meeting. For example : provision of waterbed, wheel chairs, commode etc., livelihood support provision of food, education of children, housing, etc. 22

23 ! State Policy emerging out of practice - First state to have a Palliative Care Policy(2008)! Formal Government support Health and LSG Departments! Mainstreamed in the Local Government planning and implementation process! Committed professional support to the programme especially in training and monitoring led by Institute of Palliative Medicine (WHO Collaborating Centre)! An effective participatory monitoring system " Local Government level " District level " Director of Health Service (DHS)/NRHM level 23

24 ! Widespread social acceptance and support " Personal involvement of elected members of Local Governments " Flow of motivated volunteers- Active involvemnt of the student community " Support from civil society organizations " Support from the media! Most difficult challenge of scale overcome 24

25 ! A viable public health model for incurable noncommunicable disease! A people-centered programme by the community led by local governments! A working model of private, public, professional, local government partnership! Nurse-led, Doctor-supported professional component! Operations through the Primary Health Centres! Convergence of different programmes and resources 25

26 Further integration and expansion of the program CSO- Government Interface LSGI Health Services interface Capacity building for physicians at primary, secondary and tertiary levels Impact assessments ( social/economic/ QoL) Evaluation Adaptability to prevention and management of other areas of NCD Adaptability to other geographical areas 26

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