12 th September 2006

1. Presentation to the Parliamentary Portfolio Committee by Hospice and Palliative care Association of South Africa,Wits Palliative Care and the Palliative Care Society of South Africa 12th September 2006 Dr N Dinat, Z Sithole, J Marston, Dr A Barnard, L Penn-Kekana

2. Who we are PCSSA Palliative care Society of South Africa University of the Witwatersrand

3. Translating policy into action • Palliative care is part of South African Health policy The Patients' Rights Charter Access to healthcare • palliative care that is affordable and effective in cases of incurable or terminal illness; GOVERNMENT’S COMPREHENSIVE HIV AND AIDS CARE, TREATMENT AND MANAGEMENT PLAN Strategic Plan 2006/7-2008/9 – Health Department

4. Why are we here • Government has recognized that pain and symptom relief is a human/patient’s right • Traditionally palliative care has been provided by NGOs and FBO • Access to pain and symptom relief remains a problem to many South Africans • Need to work to strengthen palliative care in the public sector and partnerships • An oversight hearing will raise profile, identify gaps, explore challenges of implementing government policy and support development of new services

5. Many illnesses are accompanied by huge pain and suffering • Gauteng suffered 95 186 deaths in 2002 (Stats SA) • 38% from AIDS and cancers • Significant number from other chronic illnesses • Almost all would have attempted access to a hospital several times • Inpatient mortality about 20% • Nurses and doctors are traumatized since they do not know what to do But much of pain and suffering with AIDS and cancers could be alleviated using simple approach

6. WHO expert cmmtee on cancer pain and active supportive care 1996 • In most parts of the world, the majority of cancer patients present with advanced disease. For them the only realistic treatment option is pain relief and palliative care” • Freedom from pain should be seen as a right on every cancer patient and access to pain therapy a measure of respect for this right

8. Sr Zodwa Sithole A primary health care nurse and a palliative care nurse-clinician from Kwa-Zulu Natal

9. palliative drugs • All on the essential medicines list • In SA 8 drugs (all on the EDL) can do this (cancers and AIDS) • In the UK 4 drugs shown to ameliorate most pains and symptoms • Nurse-clinician prescribing

10. When the doctors say there is nothing more that can be done ‘caring for those we cannot cure’ Adds life to days, not days to life Provides pain relief and symptom alleviation from diagnosis until death Provides bereavement support What is Palliative Care? PHYSICAL EMOTIONAL SOCIAL SPIRITUAL

11. What palliative care is not • Synonymous with home-based care • Care without drugs or health care workers • Terminal care provided only by hospices • A luxury for the rich, that is unaffordable • A vertical programme • A “nice to have” • Step-down care

12. Why we cannot afford not to have palliative care • Children and the elderly are left unsupported to care for dying family in pain • Health care workers and home based carers are traumatised by watching on helplessly • Lack of palliative care increases the feminisation of poverty

13. Direct costs Less than a hospital R1600 vs R300 BUT rational visits with strict referral criteria Nurse-clinicians utilized effectively diagnosis, treatment, and referral Savings Save multiple unnecessary admissions into tertiary centres Will make HBC programmes more effective Integration will reduce duplication in management Why We Can Afford To Provide Palliative Care In The Public Sector

14. Palliative care effectively mitigates suffering • Studies have shown a gap in access to effective pain and symptom relief • Barriers include lack of knowledge and misconceptions, cumbersome regulations of some drugs, not ‘mainstream’ medicine

15. Challenges in providing palliative care in South Africa • The Public and the providers’ knowledge about palliative care • Myths about morphine and pain relief in cancer and other life-threatening illnesses • Misconception that palliative care is about euthanasia

16. Enhances Home Based Care Programmes • Policy states palliative care should be available • This model does not replace HBC but supports them • HBC needs palliative services to do their work more effectively. • Our Palliative services are enhanced by working with HBC groups in the Soweto Care Givers Network, and region 6 & 10 meetings

17. Palliative care supports patients and their families • Relief from pain and alleviation of suffering is a basic human right • Palliative care is affordable, do-able • Allows people to live until they die and to die in dignity

18. WHO Model Education Of the public Of health care professionals (doctors, nurses, pharmacists) Of others (health care policy-makers, administrators, drug regulators Drug availability Changes in health care regulations/ legislation to improve drug availability (especially of opioids) Improvements in prescribing, distributing, dispensing and administration of drugs Government Policy National or state policy emphasising the need to alleviate chronic cancer pain

19. An interview with a family member who received palliative care

20. Palliative care services at the Chris Hani Baragwanath HospitalSoweto Dr Natalya Dinat

21. Equity – by public sector provision

22. Mr Martin passed on 5 days after this visit • Our patient for 5 months. We helped with breathlessness; choking feeling; pains which needed morphine; fits; incontinence; family issues and feeding; ensuring that the family were able to cope at home, so preventing more admissions to CHB, and probable death at CHB

23. Collaboration with the DoSD • Palliative team work with DoSD to distribute food parcels to patients who require it • Do the ‘means test” • Provide distribution points • Keep records

24. Palliative care and children Joan Marston from St Nicholas Childrens’ Hospice, Bloemfontein

27. A vision for palliative care • Quality palliative care will be accessible to everybody • Less suffering using local innovations, EDL, community partnerships • All HCW will confidently use a palliative approach • Multidisciplinary palliative team in each DHS • Patient’s rights realised • Patients’ and their families’ suffering mitigated

28. Contact us Loveday Penn Kekana Email: loveday.penn-kekana@nhls.ac.za Dr Natalya Dinat Tel: 011 933 4031 Fax: 011 933 3482 Email: dinatn@chse.wits.ac.za Zodwa Sithole Email: advocacy@palliativecare.co.za