Parliamentary Health Committee presentation 20 Feb 2013

1. Parliamentary Health Committeepresentation 20 Feb 2013 Liz Gwyther Zodwa Sithole

2. HPCA • Membership organisation • Hospices choose to be members, recommended by provincial chairperson, go through the process of survey, mentorship • 183 service sites, in 9 provinces, 39 of 54 health districts • Provincial/regional associations

3. Palliative care within the Re-engineering of Primary Health Care HPCA supports the RPHC as a visionary strategy “A long & healthy life for all” What about people with advanced progressive illness?

4. Palliative care: • Quality of life • To live as actively as possible • To prolong life (in conjunction with other therapies)

5. Aligning Home Based Carewith the Re-engineering of PHC Strategy District Management Team Specialist Support Teams District Hospital PHC Clinic Doctor PHC Nurse Prof Nurse Staff Nurse ENA Counselor Pharmacist Assistant Community Health Centre COMMUNITY CHW Outreach Teams School Health HBC NGOs Hospice Service Delivery, Training & Supervision

6. Palliative care • End-of-life care • Physical comfort with control of distressing symptoms • Emotional and spiritual support of patient and family members • Dignity in death • Support in bereavement

7. Palliative care • Restoration to health • Continuous treatment support • Concern regarding loss to treatment • Research shows that treatment support in the home enhance retention in care

8. Prevention at household level - family & micro-community • Care of seriously ill patient provides powerful teaching moments for prevention messages

9. Care of children • Paediatric palliative care • Care of children with parent who is ill • Care of OVCs • Teacher’s facilitating children’s grief

10. Categories of paediatric palliative care • Category 1 – life-threatening illness possible curative Rx egleukaemia • Category 2 – Rx aimed at prolonging life eg cystic fibrosis, HIV with HAART • Category 3 – long-term progressive disorders, no cure egmucopolysaccharidosis • Category 4 – severe neurological disability eg cerebral palsy

11. Palliative care provided where? • HPCA Hospices in-patient facility 2% of patients • Home care • ? Formal health care sites

12. Accreditation • HPCA standards of governance, management and palliative care • Surveys to assess level of compliance with phase 1, phase 2 & full standards

13. Training & mentorship to achieve full accreditation • Capacity building • Mentorship process to reach full accreditation • Star rating system to recognise progress • Mentorship visits to organisations

14. Resources • Clinical Guidelines for palliative care (adults & children) • TB guidelines • OCA Tool • Legal aspects of palliative care • Best Practice

15. Supervision & support – quality care • Prof nurse – in service training of HB carers • Visits patients with HB carers • Weekly/fortnightly meetings

16. Reaching more people (Staffing norms) POSSIBLE ALLOCATION OF RESOURCES FOR PALLIATIVE HOME CARE 2 PROFESSIONAL NURSES and 1 SOCIAL WORKER ↓ 1 ENROLLED NURSE (STAFF NURSE) and 1 SOCIAL AUX WORKER ↓ 1 Senior Caregiver/ Aux nurse/ Further teams as needed (Does routine first assessments Supervises team of 10 caregivers Screening of caregiver referrals Liaises with and refers to enrolled or prof nurse) ↓ 10 caregivers, working individually or in pairs (40 hrs per week) ↓ ↓ ↓ ↓ (20 - 25 hours per week) 20 patients per caregiver ( recommendation – 10 Cat 1pts and 10 Cat 2 or Cat 3 pts) 13 patients per caregiver (recommendation – 8 Cat 1 pts and 5 Cat 2 or Cat 3 pts) Total of 200 patients per 1 senior caregiver and 10 caregivers Total of 130 patients per senior caregiver and 10 caregivers

17. Needs assessment • An estimated 667,900 deaths in South Africa from all causes in 2008 (WHO). An estimated 415,000 deaths for predictable causes including: • HIV 263,000 • NCDs 83,700 • Cancer 48,800 • TB 19,500 • HPCA member organizations cared for 72,816 patients that year not all of whom died in this time • So what was the dying experience like for approximately 400,000 South Africans

18. Household data SA hospices • Household Data Management System • Data collection at household level • Data capture at hospices • Data analysis at HPCA/hospice

20. Cost of care • Interim analysis of costing project • Cost/bed/day in sub-acute facilities: R550 • Cost of supervised HBC/patient/month: R900

21. Models of palliative care • HBC • Sub-acute care • Community Health Centres • District Hospitals (Abundant Life) • Gauteng Centre of Excellence for Palliative Care Chris Hani Baragwanath Hospital

22. Continuum of care Acute care Sub-acute care Chronic care Palliative IPU 14-18d Old Age Home Hospital 2-4 days Rehabilitative Care 6weeks Health Gov & NGO Home-based Care Social Services Convalescent Care 2-6 wks Haven or shelter

23. Policy WHO Public health strategy Policy: National Palliative Care strategy, funding, models of care, essential PC drugs SITUATIONS OUTCOMES Drug Availability Education Public, HCWs Policy makers, families Logistics wrt accessibility, availability Implementation Local implementation plans Guidelines, standards WHO Public Health Model Jan Stjernswärd; Kathleen M. Foley Journal of Pain and Symptom Management Vol. 33 No. 5 May 2007

24. Where are we in SA? • Policy documents • In many policy documents but not implemented • Patients’ Rights Charter • Essential palliative care medicines on all EDLs • Training in palliative care • SANC • HPCSA • Services • Currently mainly NGO function

25. HPCA support of SA government • IACT • NC response to DoH & DSD requests • NCDs summit • MDR TB E Cape expanding to others • OCA Tool ( NGOs) • MOU with DCS, DoD • Traditional healers project • What support can we provide in the RPHC strategy? • Health systems strengthening project

27. Dr Liz Gwyther – liz@hpca.co.za Zodwa Sithole – zodwa@hpca.co.za www.hpca.co.za www.ehospice.com www.treatthepain.com www.lifebeforedeath.com

28. Thank you for your attention!We extend an invitation to our conference