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09 October 2023 | Story André Damons | Photo André Damons
A multimillion-rand grant will assist UFS to develop palliative care structures and services in FS
The palliative care team consists of (at the back, from l.t.r) Rethabile Matuka (M&E Officer), Matron Mitta Sauli and Khomotso Makhura (social worker student). In the middle: Viaan Lucas (left, social worker) and Thobeka Maziya (social worker student). In front: Sr Elizabeth Lekoeneha, Dr Dalene van Jaarsveld and Prof Alicia Sherriff.

A multimillion-rand grant will assist the Department of Oncology at the University of the Free State (UFS) to initiate the implementation of palliative care services in the Free State province and help to improve the quality of life of patients and their families living with a life-threatening disease.

The grant from the Bristol Myers Squibb Foundation (BMSF) has already improved the quality of life for patients living with advanced progressive life-threatening diseases (cancer, renal failure, heart failure, AIDS, lung disease) as well as for their families. Prof Alicia Sherriff, head of the UFS Department of Oncology, and Dr Dalene van Jaarsveld, Lecturer and Medical Specialist in the same department, are project leaders for the grant that UFS administers. The grant is for a period three years.

According to Dr Van Jaarsveld, they have also planned for a 10-bed inpatient facility at the Universitas Academic Complex that will be able to accommodate a family member of patients receiving care in preparation for their down referral for home-based care. This unit will also be used as a training facility for all undergraduate health-care students. The grant will provide staff for a limited period to assist the Free State Department of Health (FSDOF) in preparing to absorb the services. They are currently awaiting commitment from the FSDOH to start with renovation of this unit. 

Situation in the Free State 

Palliative care, explains Dr Van Jaarsveld, provides a service that improves the quality of life of a patient, and his/her family, diagnosed with a life-limited disease. “It is not only for patients who are terminally ill and should ideally be implemented much earlier in the patient's disease journey. Palliative care is a basic human right,” she says. 

“A National Policy Framework and strategy on the implementation on palliative care for South Africa for 2012-2022 was published by National Department of Health. We recognised in 2019 that there was no implementation initiated in the Free State, and no budget allocated to the implementation of this critical service.  

“Many patients in the province live with these advanced progressive diseases and experience a very poor quality of life that translates into a poor quality of death with a high symptom-burden and suffering during their last days. Similarly, the family will suffer immensely,” says Dr Van Jaarsveld. 

Prof Sherriff says they applied for this international grant to assist with the startup of these structures while the FSDOH is given the opportunity to setup the necessary budget to ensure long-term sustainability of this human right as a health-care service. 

In the Free State about 16,000 patients die every year with a high need for palliative care. Dr Van Jaarsveld says of the 15 functioning hospices in 2014 and home-based carers that were offering hospice care in most of the sub-districts in the Free State, there are only four registered hospices remaining. Of these only one has four beds where patients can be admitted. The others provide limited care to a very small area, leaving most of the districts in the Free State without any form of palliative care and support.  Most of the other provinces have different levels of palliative-care services available. The grant provides funds to initiate the implementation of this service in the Free State. 

They are working closely with the FSDOH on a provincial implementation plan that will eventually, once the grant has ended, be taken forward by the province, says Dr Van Jaarsveld. 

Impact of the grant

Through the grant a project manager, professional nurse and administrative support are employed as part of a core team at Universitas Academic Hospital with a social worker. They have received training in palliative care supported by the grant. This team, together with Dr van Jaarsveld, provides a consultation service at the Universitas Academic Hospital Complex. 

“Nearly 700 patients have been referred for palliative care in the past year and have therefore benefited (with their families) from the grant. Another two professional nurses have been employed via the grant as hub managers for the Thabo Mofutsanyane and Lejweleputswa districts. Both are currently doing training in palliative care. Once a patient is seen by the team, a palliative care plan is developed, family meetings are held, and a discharge care plan set in place. 

“To ensure continuity of care, the patients are handed over to one of the nurses managing the districts where the patients are from for further follow-up and support. This is sadly not possible in all districts,” says Dr Van Jaarsveld. 

With the grant, the palliative care team, in close collaboration with Hospice Bloemfontein, have started with accredited palliative care training for nurses and other health professionals working for the FSDOH in all districts of the province. This will help with down-referral pathways and support for patients from districts without a dedicated palliative care nurse. 

UFS and Vision 130

Dr Claire Armour Barrett, Head: Research and Development in the School of Clinical Medicine at UFS says this project is critically aligned with the second key tenet of the UFS Vision 130, maximum societal impact with sustainable relationships. Although this project is still in its early phase, almost 700 patients and as many as 2100 family members have been positively affected by this work. 

“We believe that we are bringing the UFS closer to the theme of the World Hospice and Palliative Care Day for 2023, Compassionate Communities: Together for Palliative Care. We are actively increasing awareness in communities, advocating for patients and families in need not only through service delivery, but also by education and collaboration. We are stronger together.”

World Hospice and Palliative Care Day is celebrated every year on 14 October.

News Archive

Media: Sunday Times
2006-05-20

Sunday Times, 4 June 2006

True leadership may mean admitting disunity
 

In this edited extract from the inaugural King Moshoeshoe Memorial Lecture at the University of the Free State, Professor Njabulo S Ndebele explores the leadership challenges facing South Africa

RECENT events have created a sense that we are undergoing a serious crisis of leadership in our new democracy. An increasing number of highly intelligent, sensitive and committed South Africans, across class, racial and cultural spectrums, confess to feeling uncertain and vulnerable as never before since 1994.

When indomitable optimists confess to having a sense of things unhinging, the misery of anxiety spreads. We have the sense that events are spiralling out of control and that no one among the leadership of the country seems to have a definitive handle on things.

There can be nothing more debilitating than a generalised and undefined sense of anxiety in the body politic. It breeds conspiracies and fear.

There is an impression that a very complex society has developed, in the last few years, a rather simple, centralised governance mechanism in the hope that delivery can be better and more quickly driven. The complexity of governance then gets located within a single structure of authority rather than in the devolved structures envisaged in the Constitution, which should interact with one another continuously, and in response to their specific settings, to achieve defined goals. Collapse in a single structure of authority, because there is no robust backup, can be catastrophic.

The autonomy of devolved structures presents itself as an impediment only when visionary cohesion collapses. Where such cohesion is strong, the impediment is only illusory, particularly when it encourages healthy competition, for example, among the provinces, or where a province develops a character that is not necessarily autonomous politically but rather distinctive and a special source of regional pride. Such competition brings vibrancy to the country. It does not necessarily challenge the centre.

Devolved autonomy is vital in the interests of sustainable governance. The failure of various structures to actualise their constitutionally defined roles should not be attributed to the failure of the prescribed governance mechanism. It is too early to say that what we have has not worked. The only viable corrective will be in our ability to be robust in identifying the problems and dealing with them concertedly.

We have never had social cohesion in South Africa — certainly not since the Natives’ Land Act of 1913. What we definitely have had over the decades is a mobilising vision. Could it be that the mobilising vision, mistaken for social cohesion, is cracking under the weight of the reality and extent of social reconstruction, and that the legitimate framework for debating these problems is collapsing? If that is so, are we witnessing a cumulative failure of leadership?

I am making a descriptive rather than an evaluative inquiry. I do not believe that there is any single entity to be blamed. It is simply that we may be a country in search of another line of approach. What will it be?

I would like to suggest two avenues of approach — an inclusive model and a counter-intuitive model of leadership.

In an inclusive approach, leadership is exercised not only by those who have been put in some position of power to steer an organisation or institution. Leadership is what all of us do when we express, sincerely, our deepest feelings and thoughts; when we do our work, whatever it is, with passion and integrity.

Counter-intuitive leadership lies in the ability of leaders to read a problematic situation, assess probable outcomes and then recognise that those outcomes will only compound the problem. Genuine leadership, in this sense, requires going against probability in seeking unexpected outcomes. That’s what happened when we avoided a civil war and ended up with an “unexpected” democracy.

Right now, we may very well hear desperate calls for unity, when the counter-intuitive imperative would be to acknowledge disunity. A declaration of unity where it manifestly does not appear to exist will fail to reassure.

Many within the “broad alliance” might have the view that the mobilising vision of old may have transformed into a strategy of executive steering with a disposition towards an expectation of compliance. No matter how compelling the reasons for that tendency, it may be seen as part of a cumulative process in which popular notions of democratic governance are apparently undermined and devalued; and where public uncertainty in the midst of seeming crisis induces fear which could freeze public thinking at a time when more voices ought to be heard.

Could it be that part of the problem is that we are unable to deal with the notion of opposition? We are horrified that any of us could be seen to have become “the opposition”. The word has been demonised. In reality, it is time we began to anticipate the arrival of a moment when there is no longer a single, overwhelmingly dominant political force as is currently the case. Such is the course of history. The measure of the maturity of the current political environment will be in how it can create conditions that anticipate that moment rather than seek to prevent it. We see here once more the essential creativity of the counter-intuitive imperative.

This is the formidable challenge of a popular post-apartheid political movement. Can it conceptually anticipate a future when it is no longer overwhelmingly in control, in the form in which it is currently, and resist, counter-intuitively, the temptation to prevent such an eventuality? Successfully resisting such an option would enable its current vision and its ultimate legacy to our country to manifest in different articulations, which then contend for social influence. In this way, the vision never really dies; it simply evolves into higher, more complex forms of itself. Consider the metaphor of flying ants replicating the ant community by establishing new ones.

We may certainly experience the meaning of comradeship differently, where we will now have “comrades on the other side”.

Any political movement that imagines itself as a perpetual entity should look at the compelling evidence of history. Few movements have survived those defining moments when they should have been more elastic, and that because they were not, did not live to see the next day.

I believe we may have reached a moment not fundamentally different from the sobering, yet uplifting and vision-making, nation-building realities that led to Kempton Park in the early ’90s. The difference between then and now is that the black majority is not facing white compatriots across the negotiating table. Rather, it is facing itself: perhaps really for the first time since 1994. Could we apply to ourselves the same degree of inventiveness and rigorous negotiation we displayed leading up to the adoption or our Constitution?

This is not a time for repeating old platitudes. It is the time, once more, for vision.

In the total scheme of things, the outcome could be as disastrous as it could be formative and uplifting, setting in place the conditions for a true renaissance that could be sustained for generations to come.

Ndebele is Vice-Chancellor of the University of Cape Town and author of the novel The Cry of Winnie Mandela

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