Dr Suresh Kumar Director Institute of Palliative Medicine WHO - - PowerPoint PPT Presentation

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

• rganizations



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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• The only government in LMC to have a palliative

care policy

• Emphasises home based care
• 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

• wned 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

wherever appropriate

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• Community
• wned 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

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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

• f 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

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! Widespread social acceptance and

support

" Personal involvement of elected members of

Local Governments

" Flow of motivated volunteers- Active involvemnt

• f the student community

" Support from civil society organizations " Support from the media

! Most difficult challenge of scale

• vercome

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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

• f other areas of NCD

 Adaptability to other geographical areas

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