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Bophelo Palliative Care Project




A GLOBAL GRANT PROJECT OF ROTARY INTERNATIONAL
 BARAGWANATH OUTREACH PALLIATIVE CARE


Global Grant Record - GG1531461
In Association with Chris Hani Baragwanath Academic Hospital (CHBAH) Soweto
The Centre of Excellence for Palliative Care (CEPC)

An initiative of District 9400 (South Africa) and District 1260 (UK)

Host RC Rosebank Johannesburg District 9400 with International partner RC Hatfield (UK) and RC Amwell, Amersham, Chesham, Stevenage Grange, Stevenage, Potters Bar, Newport Pagnell, Hertford Shires, Harpenden Village, Baldock, Hoddesdon, Brookmans Park, Luton North, Hitchin Tilehouse, Barton-le-Clay ,Welwyn Garden City, Hitchin Mimram, Brentwood a Beckett and Radlett District 1130, and Zierikee District 1610 Netherlands.
Rotary International President John F. Germ asked members to work together to advance the tradition of Rotary Serving Humanity in 2016-17. This is an inspirational story about Rotary Clubs, working together with the leaders in Palliative Care in South Africa, to address the global issue of access to Palliative Care as a human right, as acknowledged by United Nations’ conventions, giving support to the decisions of the 67th World Health Assembly of May 2014, (WHA67.19) for governments to integrate Palliative Care, as part of the continuum of care for all patients.  It’s about the ultimate in sustainable service: a project that has benefitted health care in South Africa.
Definition of Palliative Care Palliative care is an approach that aims to improve the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, by means of early identification, impeccable assessment, and treatment of pain and other problems physical, psychosocial and spiritual. (WHO 2002)
Bophelo Home-Based Palliative Care Project After identifying a need to expand palliative care to End Stage Renal Failure patients at Chris Hani Baragwanath Academic Hospital (CHBAH) in the Soweto district of Johannesburg, Gauteng Province South Africa, the RC of Rosebank District 9400, in conjunction with several UK Rotary Clubs from District 1260, implemented the Bophelo Palliative Care Project. This was funded through Rotary International by a $98,000 Rotary Global Grant, awarded at the end of 2015. This project was led by Rtn James Croswell, President Dr Neville Howes and PP Mark Franklin from RC of Rosebank District 9400 and PP Frank Taylor, Rtn of Hatfield UK District 1260 and including Past District 1260 Governor Debbie Hodge, who led the contribution on Pastoral and Spiritual Care, which was one of the defining components of the palliative care model developed.
The Programme was initiated in March 2016 and ended in April 2017 after successful enrollment and management of 150 patients in End Stage Renal Failure.
Outcome and Achievements. Sustainability has always been at the heart of Rotary thinking.  By supporting the Chris Hani Baragwanath Academic Hospital, Rotary has a result that is supreme in sustainable service. The benefits go far beyond home-based palliative care and freeing much needed hospital beds. The cost savings released funds that can be returned to public health budgets and directed to other pressing needs, advancing medical work into healthier tomorrows.
The Project was set up to provide care and support for terminally-ill patients with kidney disease in their own homes. Provision of palliative care for renal patients has been achieved. Pressure on the overworked Chris Hani Baragwanath Academic Hospital was reduced with a reduction in prolonged hospital stays and of the cost of patients’ hospital visits. The program achieved patient satisfaction, quality of care, well-being and control of costs. Most importantly the service added value and helped develop evidence for the effectiveness of palliative care in public health. It has focused policy making decisions and added support to the development of a national policy for public sector provision of palliative care. The newly drafted Policy Framework and Strategy for Palliative Care (NPFSPC) has adopted the interdisciplinary intervention model which included spiritual care as a component of health care. Spiritual care is now officially part of providing health care interventions.  Rotary International has been instrumental in the introduction of spiritual counselors as a vital part of palliative care. Rotary will continue to be mentioned when discussing models of care for palliative care, for years to come. Taking part and seeing the WHO policy on palliative care established in South Africa has created a positive awareness of Rotary.
HOW THE PROGRAM WAS ESTABLISHED.  A Rotarian who THINKS BIG, thinks continuity, thinks sustainability is none other than PP Frank Taylor RC Hatfield (District 1260). Following the successful introduction of the Abundant Life Pilot Palliative Care Programme in the medical wards of the Victoria Hospital and Groote Schuur Hospital in the Western Cape, PP Frank Taylor then turned his attention to the 3rd largest hospital globally; a hospital with 3000 beds, the Chris Hani Baragwanath Academic Hospital (CHBAH) in the Soweto area of Johannesburg, South Africa. Frank contacted his South African friend PP Brain Leech, RC of Rosebank, Johannesburg. Frank and Brian, both retired professional engineers, had co –operated together in executing 3 sustainable water projects in rural areas in Southern Africa, funded by Matching Grants, delivered by Rosebank and Hatfield Rotary Clubs. Frank had been inspired by a South African Rotary Ambassadorial Scholar, Dr Lindi van Niekerk’s philanthropic zeal regarding home-based palliative care. President –elect Dr Neville Howes, ex Director General Health Services (NPA), supported involvement in a palliative care project strengthening access to palliative care in the public sector.   
Rtn James Croswell of RC of Rosebank (Chairman of the International Committee) met with Dr Charmaine Blanchard (MPhil Pall Med, MB BCh, BSc (Hons) Palliative Medicine) Director of the Centre of Excellence for Palliative Care (CEPC) at CHBAH in Soweto Johannesburg. The Gauteng Centre is the leader in Palliative Care in South Africa who conducts clinical, health systems and policy research supporting the development and implementation of a national framework for public sector provision of palliative care. Although the Centre has run a successful model of hospital-based palliative care, and outreach services into the community, there was no renal outreach palliative care to patients and their families. Dr Charmaine Blanchard agreed to an involvement in a much-needed Renal Palliative Care program to provide home care in the end stages of renal failure, to be run within the regulations applicable to the Baragwaneth Hospital. It would be an ideal program capable of collecting data to create reports, useful for Rotary International and for decision making purposes to inform policy and improve interventions as the Centre’s response to the WHO Resolution on Palliative Care was underway.
Needs Analysis During March 2015 Rtn Frank Taylor and PDG Debbie Hodge visited South Africa to assist in designing a detailed project with measurable goals together with plans, timelines and costs. The RC of Rosebank arranged a visit to Chris Hani Baragwanath Academic Hospital, a tertiary level referral hospital. Frank Taylor, together with several UK Rotary clubs from District 1260, collected over 70 syringe drivers, valued over R1 500,000, were gratefully received by Ms Duduzile Ngidi, the Director of Nursing Services, to be used in both Palliative Care and in other Wards at CHBAH.
 PDG Debbie Hodge District 1260, PP Frank Taylor UK Hatfield Rotary Club, Rtn James Croswell (chair of International Committee from Rosebank Rotary Club) DG Annie Steijn District 9400, President John Symons Rosebank Rotary Club, Dr Charmaine Blanchard, the Director of the Gauteng Centre of Excellence for Palliative Care at the Chris Hani Baragwanath Academic Hospital and Ms Dusuzile Ngidi Director of Nursing Services (Hospital)

PP Peter James Smith arranged for Ms Debbie Hodge, an expert in spiritual care counseling, to give a radio interview on the relevance of palliative care in Global Health. She also gave a presentation “Spirituality and Bereavement in end of life care” to the staff at the Centre (CEPC). It was established that there was a need to strengthen spiritual care intervention to address the management of “total pain”. Pain is not just physical because of illness in the body. It is also emotional, social, cultural and spiritual. (See diagram)






Renal Unit, DG Annie Steijn District 9400, President John Symons of RC Rosebank and several Rotarians joined Dr Gloria Teckie, Specialist Nephrologist on a conducted tour of the Renal Unit.

Dr Blanchard, Dr Teckie, PP Frank Taylor, DG Annie Steijn, President John Symons, Rtn James Croswell, PDG Debbie Hodge a specialist in bereavement counseling.


This unit sees some 500 renal outpatients per month. It provides an acute haemodialysis service for patients admitted with acute renal failure, as well as a chronic dialysis service to some 150 patients at any one time. Patients are also prepared for and followed up after kidney transplantation. The high costs and limited availability of dialysis to patients residing in Third World countries means that only a small proportion of those who would benefit from dialysis can receive this treatment. As a result, many patients must be managed with supportive therapy, which until now was provided solely at the Hospital Renal Outpatients Department. With often insufficient preparation for the inevitable deterioration and death, families and patients were left to cope the best they could, which often meant repeated admissions to hospital and eventual death in hospital. The situation of not being able to access life-saving procedures, or being removed from a life-saving program, is distressing to patients and their families.  As these patients would benefit from a holistic palliative care program, including spiritual care, a decision was taken to support the Gauteng Centre of Excellence for Palliative Care and the Renal Unit at Chris Hani Baragwanath Academic Hospital. Rotary’s program would deal with patients who became eligible for inclusion in the program after identification at the renal clinic and in the wards at CHBAH.
Business Plan.  Dr Charmaine Blanchard, Director of the Centre, together with PP Mark Franklin prepared a business plan, which President Dr Neville Howes and Rtn James Croswell presented to Baragwanath Hospital Executives to gain approval from the Gauteng Provincial Authorities. Once this was accepted, funding was sought through a Global Grant from Rotary Foundation, the International Charity’s financial arm of Rotary International.  Frank Taylor drafted the Grant Application with the Rosebank Committee. Rtn James Croswell and PP Mark Franklin RC of Rosebank prepared an MOU with Wits Health Consortium (a Private Company solely owned by the University Of Witwatersrand Faculty Of Health Science) who were to manage the day to day employment and payment of staff salaries of the project team. PP Mark Franklin handled the monthly payments and financial reporting.
BOPHELO' which means ‘Here is Life' became the project name based on the tenet:
                “WE ARE NOT THE DYING, WE ARE THE LIVING, HELP US TO LIVE UNTIL WE DIE

Goal To provide home-based palliative care to patients with chronic end stage renal failure and their families, to ensure quality of life and dignity in death.

Objectives
·         To improve awareness and achieve accessibility of palliative care to Renal patients.
·         To manage the patient’s symptoms at home.
·         To assist patient with emotional, psychosocial and spiritual aspects of living with a life threatening illness and in time with dying.
·         To educated the family about the patient’s illness and how to care for the patient.
·         To improve the quality of life of patients and their families by providing this care and thereto reducing the need for, and costs of hospital visits and prolonged hospital stays.
·         To provided bereavement care and counseling to surviving family and friends.

Methodology and Delivery The Project budget provided for a team of two nurses, spiritual counsellor, and a social auxiliary worker and team driver. A doctor, employed by the hospital, and 5 volunteer spiritual counsellors, supported the team.
Sister Doris Radebe (Professional Nurse)
Sister Gloria Mokwatle (Professional Nurse)
Mr Tlou Mothata (Social Auxillary Worker)
 Motlotlegi Sebitso (Driver and Administrator)
Spiritual Care Workers :
    1. Mrs Thembi Mngomezulu
    2. Ms Sibongile Khumalo
    3. Miss Lindiwe Shabalala
    4. Mr Eric Mazibuko
    5. Mrs Boitumelo Mokoena
Tlou Mothata Auxiliary Social Worker, Doris Radebe - Nurse Clinician, Dr Mpho Ratshikana Moloko, Deputy Director, Motlotlegi Sebitso Driver, and Dr Charmaine Blanchard Director of Centre of Excellence. Gloria Mokwatle, Spiritual care co ordinator nurse clinician (not present)


The staff salaries, training and support resources such as cell phone and a computer were part of the budget. A vehicle was procured to facilitate home visits.
The logo "BOPHELO” with the Rotary and Gauteng Centre of Excellence logos were proudly displayed on the vehicle.





Training
1.       Management of Renal Symptoms Training
Dr Gloria Teckie, Specialist Nephrologist trained the Palliative Care nurses on the presentation of end stage renal disease and the management of common symptoms in renal failure patients.
2.       “Approach to Palliative Care” Training
Sr Keletso Mmoledi provided “Approach to Palliative Care” training to nurses in the Renal Unit to enable them to identify and manage palliative care needs among renal patients. Sr Siza Nkosi provided in-service training to Palliative Care nurses on how to use a syringe driver.
3.       Five Day Spiritual Care Training Course
The Bophelo Project had a holistic thrust – the provision of spiritual, but non-religion-specific support, to patients and their families facing end of life. Spiritual care provision had been a gap
in the services provided as part of holistic care to the patients and their families. The need for spiritual care training would bridge the gap on managing total pain; which encompasses the physical, emotional, social and spiritual aspects of pain.

During April 2016 PDG Debbie Hodge a Rotarian and Director of Chaplaincy United Kingdom, lead the contribution on Pastoral and Spiritual Care, supported by Dr Blanchard and Revd Amanda Ferris a Hospice Chaplain from Hertfordshire, UK who assisted with the five day training.
Rtn Mark Franklin identified 39 volunteers from different denominations in Soweto who received training. This enabled the Centre to have access to spiritual counseling for all patients enrolled in the Bophelo Project. 



Training Manual    The Pastoral 
and Spiritual Care training manual is based on the model developed by Debbie Hodge, with input from Dr Blanchard.
Amanda Ferris, Dr Blanchard holding the training manual, PDG Debbie Hodge and President Neville Howes.

THE BOPHELO MODEL
An Interdisciplinary Intervention Model. The assessment and management of symptoms together with effective communication, psychosocial intervention with a spiritual care component were the core components of the Bophelo palliative care model. Consultations with renal patients were structured differently to the Adult Palliative Care model. The Bophelo model of managed care was an interdisciplinary patient-centric intervention, which enabled patients and families to receive comprehensive palliative care in one joint consultation, with additional questions to inform spiritual counselor or social worker (See diagram)
The services were structured in such a way that the Palliative Care Renal team became part of the Renal Unit. They participated in the Wednesday Renal unit clinics and Tuesday’s multidisciplinary teams meetings directed by the Head of Renal Unit, Dr Mashabane. Individual patients were discussed, with input provided from team members.

The team conducted consultation jointly, instead of each staff member interviewing the patients separately. This model was very beneficial to patients who gave their history only once to the team who then referred to the renal doctor for advice. This time/cost saving afforded patients more home visits until their death. Patients were visited on a regular basis to maintain symptom control within their homes with support for the families. Patient files recorded all aspects of care given.

Social Intervention.  As part of dealing with total pain, social needs were identified during the initial consultation. The home visits enabled the team to know the reality of what patients and families face on a daily basis. The Social worker assisted with family therapy, poverty, social grant applications, identity documents, birth certificates, sourcing food parcels, paralegal matters (wills).

Spiritual Care Component.  The trained spiritual counselors accompanied the team in all consultations to provide spiritual counseling. Follow up was provided on identified needs until the patients died. Spiritual care extended beyond the death of the patients to their families. Three types of counseling were provided to families. There were 248 spiritual care consultations. Fifty-one families received individual bereavement counseling. Twice during the year there was a Group Bereavement event which allowed the team the opportunity to assess how families were coping.


Elements of Bereavement Counseling

Cellular phone consultation.             
The appropriate use of cellular phone consultations enhanced communication, access to care, saved time and travel for patients and increased patient and family satisfaction.
Outcomes, Major Achievements and Sustainability
Access to palliative care in the public sector for renal disease patients was established. Specialized appropriate medical care, pain management, emotional and spiritual support was provided to the patients and their families. Not only were symptoms relieved but there was a decrease in the overall related costs of care. The 'revolving door' sequence of repeated admission to and discharge from hospital, for this group of patients was greatly reduced.
Patients' and families’ spiritual and emotional needs had been met which increased patient satisfaction.   The project demonstrated the Bophelo model of care was effective as a model of public sector provision of palliative care.
Integration of Palliative Care into Government Policies and Services.  South Africa was, concurrently with Bophelo, finalizing the development of the Policy Framework and Strategy for Palliative Care (NPFSPC) in terms of the 2014 WHA 67.19. The South African National Health Policy recognized the importance of palliative care, but there was no policy in place. The South African National Policy and Strategic Framework for Palliative Care was drafted by Dr Charmaine Blanchard together with Dr Jeanette R Hunter (Deputy Director General, Primary Health Care), Ms Sandhya Singh (Director, NCD National Department of Health) and Dr Shaidah Asmall (Senior Technical Advisor, Primary Health Care).
Dr Mpho Ratshikana-Moloko, the current Director at GCEPC, together with Dr Charmaine Blanchard of Wits Health, delivered a presentation to the National Health Council and to Provincial and National Ministers. When Deputy Minister of Health, Dr MJ Phaahla announced the approval of the Policy Framework and Strategy for Palliative Care (NPFSPC), he praised South Africa for joining a handful of countries in the world in adopting a National Policy on Palliative Care.
The findings and outcomes identified by the Bophelo project, influenced the policy. The 6th April 2017 was an historic day for Palliative Care in South Africa, and for Rotary International, who have made a mark in the history of Palliative Care through supporting the Gauteng Centre of Excellence for Palliative Care. The Rotarians felt the significance of the occasion and were appreciative of the opportunity to contribute towards making a difference to many South Africans.
The Bophelo model has been adopted as the model of care for Centre’s of Excellence in South Africa and will be rolled out to 9 other provinces.  Spiritual care is officially part of providing health care interventions.
While Rotary International strengthens efforts to eliminate the burden of one big killer in the world today namely, Polio, Rotary International has now helped alleviate the suffering of those, in South Africa, with progressive illness which does not respond to curative treatment. Rotary Foundation has established a mechanism for cooperation and partnership among clubs and between Rotary and other leading organizations such as the Gauteng Centre of Excellence for Palliative Care; it has enabled Rotary clubs to be ever more ambitious in their work to reach for goals and to continue Foundation’s long tradition of good work. This South African project has enabled Rotary Foundation to soar ever higher in fulfilling its ongoing mission to serve humanity.  Arch Klump would be proud! 

Dr Mpho Ratshikana-Moloko with Global Grant Committee members from left: 
James Croswell, Mark Franklin and Marianne Soal (President Neville Howes not present.)

Rotary Add-on Services Provided
·                     Donations of e’Pap, a supplemental porridge, for renal patients by D 1260 Clubs.
·                     Donation of 10 wheelchairs and walkers by St Albans Priory Rotary Club UK.
·                     Rtn Merle Langenlegge ensured SDs donated by D 1260 were calibrated ready for use.
·                Donation of bed linen, toiletries, slippers to patients by Anns from Rosebank Rotary Club.
·                     Ann Charlotte Croswell handled catering of all functions and food boxes for patients.
·                     AG David Bradshaw (D 9400) arranged donation of blankets from the Blanket Drive.


Document has been based on reports by Dr Mpho Ratshikana-Moloko, Director Gauteng Centre of Excellence for Palliative Care at CH Baragwanath Academic Hospital and her st aff and input from Rotarians James Croswell, Mark Franklin and Marianne Soal of the Rotary Club of Rosebank, SA. and Rtn Frank Taylor of Hatfield, UK .

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