Dr Suresh Kumar Director

Institute of Palliative Medicine WHO Collaborating Center for Community

Participation in Palliative Care and Long Term Care Kerala, India

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“Palliative Care is the active total care of patients whose disease is not responsive to curative treatment”

 Symptom relief, Psycho social support & spiritual support

 0.3 – 0.4% 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

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  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

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 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

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 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)

! 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

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!  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

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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

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  Network of trained volunteers in the community

  Support system by trained professionals, institutions and organizations

  Palliative care institutions as nodal centers

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 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

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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

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 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

  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

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• 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

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  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

! 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

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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

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!  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

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 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

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! 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 lymphoedema care and ostomy

care

" Ensure compliance

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! 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.

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!  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 21.09.12

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!  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

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!  A viable public health model for incurable non-communicable 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

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 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

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