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The Chair’s Annual Report for 2023-24 is now available to download here.
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PCW is delighted to report that the inaugural meeting of the ne Associate body and PCW Trustees took place online on Friday May 10th.
The meeting was chaired by Chair of Trustees, George Smerdon and 17 out of the 19 Associates, along with 9 Trustees, joined in a 90 minutes meeting on zoom. Participants from as Zambia, Tanzania, Ghana, Palestine and India as well as from UK took part.
There was an introductory address given by George which included the back ground to the Associateship initiative.
NB This is available under resources along with a paper on the role of an Associate.
This was followed by a short presentation by Dr Simon Pennell, one of the new Associates, who talked about his past and present contribution to the work of PCW by way of illustrating how Associates might become involved in PCW projects and pieces of work. There are of course many different ways of joint working and collaboration.
It had been hoped to break out into discussion groups based around sharing palliative care experiences, something about teaching and learning experiences and also exploring the potential for collaboration across the various work programmes in which people are involved. PLUS, whatever came up!
Sadly, this was not possible due to a technical glitch. However, a lively discussion and exchange of ideas did take place across the large group. It is hoped that these conversations will continue informally via a WhatsApp group.
Updates will be posted in due course
My grateful thanks to all who participated in this exciting event and to those who helped to organise it.
PCW is delighted to share news of this exceptional achievement.
This is an extract from Hospice Ethiopia UK’s latest newsletter.
We are delighted that Ephrem, Director of Hospice Ethiopia, Addis Ababa,Ethiopia, has been awarded his doctorate from the University of South Africa
He studied ‘breaking bad news’ and identified the preferences of patients and individuals in how they would like to be informed of their condition when diagnosed with a life-threatening illness. He went on to develop a culturally sensitive guideline for breaking bad news in the palliative care setting in Ethiopia.
He commented “this represents a life time achievement through contributing to palliative care services in Ethiopia. The results will significantly contribute to Ethiopian patient care and treatment practice and decisions when life-threatening illness is diagnosed. Hopefully the results will be adapted for use in other African palliative care settings.”
Dr Barbro Norrstrom (a Swedish oncologist and palliative care specialist) summed up Ephrem’s achievement by saying “I’m so incredibly impressed by Ephrem, his great capacity, dedication, compassion for palliative care and the implications for all Ethiopians in need of palliative care".
Well done Ephrem!
The Palliative Care Toolkit for resource limited settings sees its10th translation and this time into Nepali.
Nepal, with a population of 30.5 million, is predominately a mountainous country with many rural areas inaccessible by road. 83% of the population live in rural settings. For some people it maybe a days walk to the nearest road and another day by bus to their nearest hospital. One hundred and twenty five hospitals serve the population but much of the health care is given at Health Posts delivered by mid-level health workers. To reach a Health Posts maybe require many miles on foot.
A survey of palliative care needs indicated that up to 5% of people living in remote rural areas have advanced illness with significant health care needs and very few have received appropriate integrated management of their condition. Whilst palliative care focuses on caring for those with advanced illness, there is evidence that the communication skills and management of chronic conditions learned by health care professionals in the process of training in palliative care enhances their ability to provide effective management of non communicable diseases conditions earlier in the disease trajectory.
Background to the project
INF Nepal trained 23 health post workers in June 2018 utilizing the English version of the Palliative Care Toolkit. This training was evaluated in June 2019 through an online questionnaire and visits to six health posts where the training had been undertaken. Feedback from the training highlighted the need for a Nepali language version of the Toolkit to be available.
PCW were successful in a grant application with INF to secure funding of £15000 from a Trust for the Toolkit to be translated and contextualised into Nepali for local training and use at health posts.
Development of the project
Work on the translation commenced in April 2019, with contextualization, translation, and initial production. The trial training for health post staff using the newly translated Nepali Toolkit was planned by members of the INF Nepal Palliative Care Team visiting Lamjung District Hospital in March 2022. However this was cancelled at short notice due to the onset of the COVID-19 pandemic and an extended lockdown in Nepal.
The delay in the project gave the team in Nepal opportunity to complete further translation of Tools which we will be added to the Toolkit Appendix, including the Nepali translation of the Palliative Care Outcome Scale and the Nepali translation of the Supportive and Palliative Care Indicator Tool for Low Income settings (SPICT-LIS). SPICT-LIS is a tool to help clinicians identify people who need palliative care. The Nepali version of the Palliative Toolkit for Resource Limited Health Settings is the first Toolkit to have these useful additions within it.
Toolkit Training
Following relaxation of COVID restrictions in Nepal, and permission for the resumption of training, two delayed 2-day workshops using the draft Nepali Toolkit for training of health post workers were held in Lamjung district in November 2021.
The plan for 20 trainees at each workshop (10 District Hospital staff and 10 health post workers) was reduced to 15 to ensure COVID-19 safety. Five hospital staff were trained at each workshop - so an increased total of 30 participants completed the training.
Evaluation
An evaluation of the project was carried out by two independent consultants in Palliative Care who praised the project and its outcome.
The process of translation was overseen by Dr Dan Munday (1) a specialist in palliative care who has been developing palliative care services in Nepal for many years. Dr Munday is part of the Primary Palliative Care Research Group at Edinburgh University but currently in Lamjung overseeing the training and development of palliative care there.
Since the initial grant and development of the PCW/INF project the British Government have awarded INF, in collaboration the EMMS (Edinburgh Medical Missionary Society) , a grant of £50,000 for the Sunita Project to continue the development of palliative care in Nepal.
Palliative Care Works have been delighted to work with the International Nepal Fellowship (INF) over the past five years to enhance the development of palliative care in Nepal. Also to have collaborated with the Nepalese Association of Palliative Care (NAPCare) Gurkha Welfare Trust (GWT) who have also been partners involved in the project.
At PCW’s AGM in October 2022, Jane Appleton, retiring PCW Chair and Helen Bennett, our deputy chair, stood down from the Board with immediate effect. Both were Founding Trustees and have made major contributions to the development of PCW, not only in the various Palliative Care training programmes that PCW has delivered overseas but also in the major and significant strengthening of PCW’s Operational Profile and its governance.
In addition, Jane established the link with Bethlehem University leading to PCW participating in teaching on the Oncology Nurses Master’s degree course. Latterly, Jane was also a mentor on PCW’s FCDO funded programme to introduce Palliative Care to four Hospitals in the Mtwara Region of south east Tanzania. Helen, amongst her other contributions, championed the needs of children living with life-limiting illness, especially those in LMICs. We will greatly miss them, and wish them well; Jane, as she pursues other activities, and Helen, continuing her wonderful work as Director of Care at the Alexander Devine Children’s Hospice in Maidenhead. We are pleased to report that Helen continues her connection, as an Associate of PCW.
The Board is delighted to announce the appointment of Ruth Alderton as a new Trustee. Ruth attends her first Board meeting on March 17th. Her profile can be seen on the website.
In another major change, Stephen Chowns, also a Founding Trustee, stood down as PCW secretary with effect from October 2022. Formal thanks for his outstanding work over all the years have been extended and recorded. He continues as a Trustee, and supports PCW’s new Administrative Assistant, Sue Lakie, whom the Board was delighted to appoint in October 2022.
Completing the restructuring, the Board is also pleased to announce that Isobel O’Connor has joined us as Honorary Treasurer, supporting the Board and its Treasurer. Prior to this Karilyn Collins, another Founding Trustee, had been Treasurer since PCW’s inception. Over the many years, Karilyn had used all her talents most skilfully to keep our finances in order and in particular, her management of the FCDO SE Tanzania four hospital Project was outstanding and exemplary. This contribution has been formally acknowledged and recognised. We are delighted that Karilyn and Stephen continue as fully active PCW Trustees.
George Smerdon, PCW Chair
PCW is delighted to report its participation in the African Palliative Care Association’s recent hybrid Conference, ‘Palliative Care in a Pandemic’, held on August 25-26th and live streamed from Kampala, Uganda.
A pre-recorded 10-minute oral presentation “Lights, Camera, Action - Innovation in the time of COVID-19,” about our new series of films, was aired on Day One, followed, on Day Two, by an hour-long demonstration workshop on the use of these videos/ films in palliative care education. This was led by Tanzanian colleague, Elvis Miti in Kampala and co-hosted from U.K. by PCW Trustee, Charles Campion Smith.
Full details of, and access to, all the conference presentations will be available in due course on the APCA website www.africapalliativecare.org.
For further details about the actual PCW presentations, please contact PCW secretary, Stephen Chowns
Palliative Care Works began almost 14 years ago, and some of its Trustees are retiring over the next two or three years. We invite applications from individuals interested in joining the Board of Trustees – and the file below explains the role of a PCW trustee, and the procedure for applying.
At the end of last year Dr Richard Collins MA FRCP MBBS DTM&H DRCOG decided to step down from our Board of Trustees.
Richard joined us in 2013 and has been a committed and valued member of the Board for the last seven years. Even before he accepted our invitation to join PCW he had supported our work informally, since he had always accompanied Karilyn, his wife, on PCW projects abroad and, behind the scenes, had contributed in many ways to the smooth running of training programmes.
Richard qualified as a general practitioner in 1971 and he and Karilyn joined a practice in Herefordshire, where he became the senior partner. He later moved into hospital diabetes work, but in 2001 he and Karilyn went back out to Muheza in north-east Tanzania, where they had previously spent three months in 1995. This time they stayed for six years, with Richard as the Medical Superintendent and Physician in Teule Hospital.
Once formally part of PCW, Richard brought the same qualities of thoughtfulness, insight and quiet encouragement to all our meetings as he had done in an informal capacity. Since 2007 he has visited Tanzania many times and has been involved in Palliative Care Toolkit teaching and mentoring at various locations in Tanzania, Ghana, India, Bethlehem, and Rwanda.
Most recently, he was an invaluable member of the PCW Tanzania project team, delivering a very successful two year palliative care programme in SE Tanzania, funded by a FCDO grant of £50,000.
We thank him heartily for all his years of service and wish him well in his ‘retirement’ – knowing that his passion for palliative care will remain undimmed!
Palliative Care Works launches five educational films. Intended to help trainers around the world explain the key issues of palliative care, they come with scripts and teaching notes and are FREE.
Conference Keynote speaker and PowerPoint presentations
A team of four from Palliative Care Works has just completed the final phase of the Rotary International-funded programme of training in Addis Ababa, with two 3-day Training of Trainers courses at the Ethiopian Public Health Institute. Altogether 25 doctors, nurses and pharmacists – who had already attended a five-day basic palliative care course – were helped to develop their training skills. The courses were similar to the one held in January 2018, with fourteen participants.
There is now a core of ‘palliative care champions’ in place to lead the establishment of PC services in the key hospitals of Addis Ababa, and several centres outside the Ethiopian capital. The whole programme has been funded by Rotary Clubs in England and their international partners; and the essential link in Addis Ababa has been Dr. Nicola Ayers, Palliative Care Adviser to the Federal Ministry of Health.
The picture shows participants in the final course, together with Dr. George Smerdon, Ruth Wooldridge, Dr. Gillian Chowns and Stephen Chowns.
The Executive Summary report on this visit can be found in the Resources section
Palliative Care Works is again offering bursaries to help those who have an abstract accepted by APCA, to attend the conference in Kigali, Rwanda from 17th to 20th September.
The criteria for the awards, and an application form can be found in our Resources Section.
The 2018 Day Conference and Annual General Meeting took place, as usual at Sobell House Hospice, Oxford, on Saturday 22nd September. The title of the conference was Global Palliative Care: Focus on the Family.
Principal speakers included David Oliviere, former Head of Education at St. Christopher’s Hospice, Liz Bryan, currently in that role, Dr. Martin Becker and Helen Bennett. We also had three overseas visitors, who were on the St. Christopher's International Bursary Scheme. Presentations from the speakers will in due course be found in our Resources section, together with a short presentation describing PCW's January 2018 Training of Trainers programme in Addis Ababa (see below)
Two other notable events took place at the Conference. The Chair of Palliative Care Works passed from Gillian Chowns to Ruth Wooldridge during the AGM. Gillian has chaired PCW from the outset, and will remain one of our trustees.
We also took the opportunity to celebrate the tenth anniversary of the Palliative Care Toolkit, with which we have been intimately associated. This key resource for Palliative Care practitioners was written by Dr. Charlie Bond, Dr. Vicky Lavy, and Ruth Wooldridge, and the authors are seen in the photo about to cut a celebration cake!
The programme funded by Rotary has continued in Addis Ababa, with a second one-week course for doctors, nurses and other care professionals, based upon the Palliative Care Toolkit held in November 2017; and a short ‘Training of Trainers’ course conducted in the second half of January 2018. Both were held at the Ethiopian Public Health Institute, a new and well-equipped education and conference facility in the north-east of the city. As before, the courses were organised locally by Dr. Nicola Ayers, Palliative Care adviser to the Federal Ministry of Health.
After the January course, the teaching team, consisting of George Smerdon, Ruth Wooldridge and Gillian Chowns, visited most of the city hospitals involved in the programme, and were very pleased to note the progress being made to establish palliative care.
We’re very pleased to announce that the programme in Ethiopia, initiated with the support of Rotary clubs in the East Midlands (see item below), has now attracted matching financial support from Rotary International. This has allowed the full programme to be planned over the forthcoming eighteen months to two years, under the guidance of Dr Nicola Ayers. The next visits to Ethiopia by a PCW team are now scheduled for November 2017 and January 2018.
For the second successive year PCW held its day conference and AGM at Sobell House, Oxford on Saturday 23rd September 2017. There were 43 delegates, including PCW trustees and associates, friends of PCW and bursary students attending the St Christopher's Hospice programme. A full report will be given in our forthcoming Newsletter, due to be published in November.
For the PowerPoint presentations used at this conference please see the Resources section of this website.
The first phase of a new programme in Ethiopia, supported by Rotary International, began in November 2016 with a series of meetings in Addis Ababa followed by a one-week training programme for Health Centre staff, based on the Palliative Care Toolkit.
The team from PCW consisted of Dr. George Smerdon, Ruth Wooldridge and Dr Gillian Chowns, and they were accompanied by Mrs Christine Davies, District Governor elect, East Midlands Rotary Clubs (UK). The visit was planned in consultation with Dr Nicola Ayers, PhD, MSc, BSc (Hons) RN, the Palliative Care Adviser to the Ethiopian Federal Ministry of Health. It is intended to be the first element of a programme spread over two to three years, aimed at developing palliative care skills through training and mentoring, and in a sustainable manner.
The training programme was held at the ALERT Hospital training centre. There were 28 participants in all, Health Officers and Nurses, from eight of the Health Centres linked to the four hub hospitals in Addis Ababa. In addition there were two senior nurses from the Prison Service as well as an observer, another senior nurse, from St Paul’s Hospital (one of the hubs).
We were delighted that Dr Desalegn, Head of the Clinical Services Directorate, Federal Ministry of Health, was able to officially open the course, and return to present certificates at the conclusion.
PCW’s annual general meeting became the starting point of a one-day conference held at Sobell House, Oxford, on Saturday 24th September. Our guests included four individuals who were taking part in the bursary programme of St. Christopher’s Hospice – and their presentations describing their work in Malawi, Bangladesh, Burundi and India were both moving and informative. Edgar Ngelangela, visiting from Muheza, Tanzania, also spoke of his work. We hope to add their powerpoint presentations to our Resources page shortly.
Contributions were also made by Dr Catherine D’Souza and Dr Fiona Rawlinson.
Several trustees reported on their recent visit to the APCA conference in Kampala.
News was also given of PCW’s plans to work in Ethiopia and Kenya in the next six months. Look out for more information as it becomes available!
This is the first official report of our work, for the September 2015 – August 2016 period, as a Charitable Incorporated Organisation. We moved into this new status last summer, after seven years as a not-for-profit organisation that began, as those of you who have read our newsletter will know, as an idea in 2006 and moved rapidly from a one-person band in 2007 to a first formal meeting in 2008 round a kitchen table to a 10 member Board of Trustees, several Associates and now a growing band of Friends.
My report will be fairly brief and I will focus on the last 12 months. In terms of overseas visits it has been a relatively quiet period, but behind the scenes we have all been busy.
The review of the Palliative Care Toolkit, originally written by Vicky, Charlie and Ruth, involved a substantial amount of work. While Jane, Ruth, Karilyn and I all worked on individual chapters, Charlie was editor in chief and certainly contributed the lion’s share of the work, for which many, many thanks are due. Two Skype meetings lasting five hours in total were only a portion of the hours put in on the review.
A second substantial piece of work has been the preparation, planning and negotiations in relation to the forthcoming project in Ethiopia. Ruth, our networker par excellence, brought PCW and the supporting organisation together, and thereafter George has ably led a small sub-group, including Ruth, and me, which has been working with the donors and the PC advisor to the Ethiopian government, Dr Nicola Ayers.
Over the years in which we have been operating, our bank balance has grown steadily. Our costs are low, since we do not have an office or any paid staff. We meet Trustees’ expenses, naturally, and have some administrative expenses, but otherwise the fees we have accumulated are used to further our work. During this past year we have contacted a number of pc sites, where we have taught or mentored in the past, and offered the possibility of pro bono work. Negotiations with Homa Bay Hospital pc team have been fruitful and a costed proposal is before the Board today.
Following on from an excellent suggestion from Karilyn, we decided to spend some of our funds on three Bursary Awards to enable overseas colleagues, with whom we had worked as PCW members, to present a paper or poster at the APCA conference. Although the process was not straightforward and there are lessons for the Board to learn, we were please d to be able to award 3 bursaries, to a paediatrician from Kenya, a nurse from Zambia, and a surgeon from Ghana. As this last winner had already attracted some funds from elsewhere, we were able to split the third award and also partially fund a social worker from Tanzania.
Not only did the Bursaries ensure that individuals, who might have not otherwise been able to afford to attend, both attended and presented and were exposed to a wider world of pc, but they also helped to raise the profile of PCW. In particular, both APCA and KHEPCA were warm in their appreciation of our support.
As we had ourselves successfully submitted an abstract on mentorship, our Board also agreed to fund the attendance of two members. Jane and I were fortunate to be the formal PCW representatives and as George and Karilyn and Richard were also there, PCW had a significant presence. Between us, we endeavoured to cover almost all the plenaries, presentations and workshops, and we will be reporting on some of the highlights after this AGM.
Finally, I should note that we have invested time, creativity and some modest funds in publicity. Our new logo is on all materials, and looks particularly good on the roller banner which Stephen designed and organised. It also graces the new PCW bags from the Good Bag Company, which comfortably hold a TK and Trainer’s Manual and much else. These arrived in time for us to use at the APCA conference and we had several requests from former students and mentees to have one, so there are now PCW bags in Kenya and Zimbabwe publicising our work.
As most of you will know, the first edition of our new twice-yearly newsletter has come out and has been sent to everyone on our database. We are also formalising our growing list of contacts by setting up a Friends of PCW category and the Newsletter contains an invitation to become a Friend (completely free!). In this way, we hope to be a point of contact (or hub, as today’s word seems to be) for any and all who have a passion for pc in resource-poor settings.
And the future? The coming 12 months promise to be busy again, with work in Ethiopia in November this year and a further visit in May 2017, mentoring in Homa Bay in Spring next year, and discussions with pc services in Ghana and the Seychelles on the horizon. All of this, of course, depends on the energy, passion and commitment of the team you see here and it is a privilege and a pleasure to work with them all.
PCW has been represented at the August 2016 conference of the African Palliative Care Association in Kampala, by five of its partners and trustees - Jane Appleton, Gillian Chowns, Karilyn and Richard Collins, and George Smerdon. The team contributed to one of the workshops, which focused on mentoring and sustainability.
The team were very pleased to meet the recipients of our bursaries, awarded to Eseenam Agbeko, Prospellina Ndhlovu, Meshack Liru and Edgar Ngelangela, all of whom made valuable contributions to the conference.
A second PCW Conference took place at the Hornton Grange conference centre, University of Birmingham, on 26th and 27th September 2015.
There were 46 delegates, and speakers included Prof. Julia Downing, Carolyn Miller CBE, Angela Kaiza from MGIT, Dar es Salaam, Dr Fiona Rawlinson from Cardiff University, and the BBC’s Global Health correspondent, Tulip Mazumdar. Visitors included four students who had just completed a programme at St. Christopher’s Hospice: Oussematou Dameni from Cameroun, Dr. Roger Ciza from Burundi, Yvonne Telamaque and Anges Louis-Marie from the Seychelles.
The programme was chaired by Mike Wooldridge, broadcaster and journalist, who has particular knowledge of palliative care in East Africa and India.
The main conference presentations are now available on our resources page. Presentations by overseas visitors, who had been attending the multi-professional programme at St. Christopher’s Hospice, have also been added.
A team from Palliative Care Works visited Korle Bu Hospital in Accra, and Komfo Anokye Hospital in Kumasi, in August 2015, to give further support in teaching and mentoring to the palliative care services. Drs Karilyn and Richard Collins, Jane Appleton and Gillian Chowns spent a week in Ghana - two in each centre - working with the developing PC teams. The work was once again carried out under the auspices of the charity Afrox, based in Oxford, England, and Stewart Kerr provided on-site support to the team.
At the beginning of November 2013 a weekend conference was jointly organised by PCW and our Scottish partner Cairdeas, to explore issues in mentoring and the use of the Palliative Care Toolkit. The conference took place at Brockington Hall in Herefordshire, England, and was attended by 48 delegates, including a number from the mentoring programme which is now under way in several African countries under the auspices of THET (the Tropical Health and Education Trust). Mentors are already engaged in links with hospitals in Kenya, Rwanda, Zambia and Uganda. The conference provided - among other things - an opportunity for those who had already travelled to their link hospitals to share experiences and impressions with those who had yet to travel to their placements.
Another key component of the conference programme was the opportunity to explore the use of the Palliative Care Toolkit and its associated training manual.
The first training of the joint venture between PCW and Cairdeas took place in Tanga, Tanzania, from 5th to 9th November 2012. The teaching faculty consisted of Mhoira Leng, from Cairdeas, and Karilyn and Richard Collins, Jane Appleton and George Smerdon from PCW. Joining us were Fran Ashby, the newly-appointed co-ordinator for the Tanga end of the project, and Angela Kaiza and Anna Shumbusho, who are working in palliative care in the Tanga region for MGIT (the Maryland Global Initiative Tanzania).
Participants on the course came from eight sites (seven District Hospitals and the Regional Hospital) and were all part of the palliative care team in their districts. The course was quite challenging, covering aspects of learning and management, and allowing all participants an opportunity to try teaching from the Palliative Care Toolkit using the modules in the training manual. Each district will now conduct a training course for volunteers and workers in health centres in the first half of 2013, in order to bring palliative care down to village level.
We are pleased to announce that a grant application to support the development of palliative care training and service development in Tanzania and Uttar Pradesh State, Northern India, using the Palliative Care Toolkit has been successful. This is PCW’s first joint venture with another organisation to bid for funding. Our partners Cairdeas who have been operating since 2005 in Africa and India, seek to build capacity for palliative care by training professionals, influencing governmental medical and education policy and developing partnerships. They therefore make an excellent like-minded partner for Palliative Care Works!
This is a two-year programme, building on successful pilot projects, which will increase the capacity of community and hospital-based health workers to develop front line palliative care training and services in the Tanga region of Tanzania and in Uttar Pradesh, India. The programme will be based on the Palliative Care Toolkit. It will be a model for scaling up, that is sustainable, appropriate in both cultures, is low cost, and can be replicated in both a hospital and community setting.
The project runs from September 2012, and a ‘training of trainers’ course will be held in Tanga in November.
The charity AfrOx has organised and funded several training programmes for palliative care practitioners in Ghana – and PCW has been involved in two recent courses, held in May and June 2012. The first was designed for doctors and nurses new to the field of palliative care, and made considerable use of the Palliative Care Toolkit. Held from 7th to 11th May at Korle Bu teaching hospital in Accra, the course had 40 participants including a chaplain and social workers. Jane Appleton and Gillian Chowns from PCW joined tutors from the United States and Uganda to present the course.
A month later Helen Bennett from PCW joined the teaching team for a three-day programme focusing on children’s palliative care, also presented at Korle Bu. There were 45 participants drawn from several regions of Ghana.
Both courses were very well received; and PCW is delighted to have contributed to the development of palliative care in Ghana.
The PCW team is growing!
We are pleased announce that we have recruited three new Associates to our team – Dr Richard Collins, Dr Michael Minton, and Dr George Smerdon all bring a range of skills and experience to PCW, and we are delighted to have them on board.
Last year, outside of PCW work, Gillian Chowns and a colleague in the Bereavement Research Forum, Dr Liz Rolls, were contracted to undertake two pieces of research for Forces Support, a new charity focused on offering practical support to the families bereaved of someone in the Armed Forces. The work included a literature review and a scoping study of organisations involved in bereavement support to military families.
Both pieces of work were completed in late autumn of last year and the Report can be found on the Forces Support website www.forcessupport.org.uk
Following on from the successful Toolkit workshops of 2009, 2010, and 2011, PCW was back in the Lake Zone in late January 2012, to deliver another week’s workshop using the Palliative Care Toolkit. Previous week-long courses have enabled multi-professional teams based in Shirati, Geita, Kolondoto, Sekuo-Toure and Bugando to establish and improve palliative care services, as well as skilling up a cohort of AIDSRelief (Tanzania) staff to incorporate palliative care in their HIV/AIDS work. This last course was held in Dar es Salaam but otherwise the courses have taken place in Mwanza, on the shores of Lake Victoria. This time, however, the PCW team of Gillian Chowns and Karilyn Collins travelled on to Shinyanga, some three hundred kilometres further south, to deliver the training to 21 health and social care participants, the majority of whom were drawn from Shinyanga Regional Hospital.
As ever, the course was multi-professional, and included pharmacists, medics, social workers, clinical assistants, nurses and a chaplain, so the combined experience was rich and diverse. The teaching team was augmented, on different days, by Dr Grace Morris, who had been a mentor for the Kolondoto team the previous year, and by Cosmos Baltazar, the pharmacist who had been one of the first palliateurs to complete a Toolkit training.
Participants responded enthusiastically to the very interactive and participative style of teaching, and the end of course evaluations indicated significant new knowledge as well as a shift in attitudes to such issues as use of morphine and breaking bad news. Both of these were topics on which course members would have liked even more teaching.
On the final day, all the teams represented – Shinyanga Regional Hospital, Shirati PC team, Geita and Kolondoto staff – worked in their own groups to produce Implementation plans appropriate to their own contexts. These have been shared with the Palliative Care Co-ordinator for Lake Zone, Amani Chomolla, who will continue to support and monitor the work in the months ahead.
While education in itself is not enough – and experience shows how crucial a mentor can be in embedding the learning in day to day practice – the PCW team, and indeed, the participants themselves, left the course confident that palliative care had taken another step forward in the Lake Zone and that both its concept and practice are gradually becoming more integrated within the health care system and within the local communities. There may still be a long way to go, but as the African proverb has it: ‘There is only one way to eat an elephant – one bite at a time”!
Muheza Hospice Care was founded in 2002 by Dr Karilyn Collins, one of the original partners of PCW.
When Muheza was asked by the Diana Princess of Wales Memorial Fund in 2008 to extend palliative care into the rest of Tanga region they willingly took up the challenge, knowing that they had plenty of trained staff with which to do this. The programme was to train a team at the regional and all the district hospitals, to mentor this team, and help them form links with home based care to provide care in the community. The training was carried out using the Palliative Care Toolkit and the Training Manual.
Within a short time of starting the programme, several key players moved to other posts and it was necessary to look outside Tanzania for help to mentor the roll-out programme. The first mentors for the roll-out were a Canadian couple, Ambrose Marsh and Leah Norgrove, palliative care specialists from British Columbia, who advertised in the WHPCO journal for a sabbatical opportunity. Tanga was the place for them and they spent six months there in 2009/2010 helping to establish the team at the regional hospital.
Since then mentors from the UK have been sent out to all the other six district hospitals. All the mentors have remained in active contact with their teams after their initial visit of between three and six months. This model has since been replicated in Lake Zone in a Tearfund programme to initiate palliative care in three of their home based care programmes. Mentors have again been recruited and have been to all sites after the initial Toolkit training course run by PCW.
The mentorship model has been very successful and enjoyed by both the mentors and the teams they have been mentoring. It has been described as a 'life changing experience' by several of the mentors. All those involved in the Tanzanian mentorship programme met for a weekend in November 2011 to exchange experiences and look at the way forward for palliative care in Tanzania and particularly with respect to mentorship. A very lively and enthusiastic weekend was enjoyed by all.
So far our mentors have been either doctors or nurses but we are very happy to consider anyone with an interest in palliative care from any health related discipline. This year we hope to extend the scheme from Tanzania to India. The mentors are completely self-funding. Anyone interested in learning more about mentorship, please contact us through the website.
A new video entitled ‘Frontline Palliative Care’ has been launched by Hospice Care Kenya, its principal sponsors, at a reception held in London on 4th July. The 23 minute film was introduced by Ruth Wooldridge, who with her husband Mike recorded and produced the programme during a visit to Kenya earlier in the year.
‘Frontline Palliative Care’ powerfully illustrates the need for both community and hospital-based palliative care, and includes interviews with doctors, nurses, patients and carers, as well as the Director of Nairobi Hospice, Dr. Brigid Sirengo and the Director of the Kenya Hospice and Palliative Care Association (KEHPCA) Dr. Zipporah Ali.
One of PCW’s founders, Dr. Karilyn Collins,was appointed a Member of the Order of the British Empire (MBE) in the Queen’s Birthday Honours announced on June 11th 2011. The citation was ‘for services to medicine, particularly to the promotion of palliative care in East Africa’. We are delighted that one of our colleagues has been recognised in this way.
Dr. Karilyn Collins and her husband Dr. Richard were invited to join a team introducing palliative care into the medical care system in Ghana. A three-day conference was led by AfrOx who have been involved in the building up of oncology in Ghana for several years. On this occasion they were joined by ASCO (American Society of Clinical Oncology) and APCA (African Palliative Care Association) and between us we constituted a faculty of 12 members.
The conference was attended by about 100 participants from 11 out of the 12 regions of Ghana; a mixed group of physicians, surgeons, nurses, pharmacists and social workers. They were a keen and lively audience and the three days packed in a huge amount of material. One outcome of the conference was that Dr. Verna Vanderpuye, head of the department of Radiotherapy at Kohle Bu Hospital in Accra, has been invited to be the government advisor on palliative medicine.
One activity that PCW has become involved in is mentorship. We are currently helping to fund Dr Chris Lukaris, who is off to Sekuo Toure hospital in Mwanza for three months to mentor the newly-formed palliative care team. Chris is a hospice doctor currently working in St Michael’s Hospice in Herefordshire, UK, and last year he gained his diploma in palliative medicine from Cardiff University. Sekuo Toure hospital was the control site for two years of research into the effect palliative care training has upon the quality of life for patients in care and treatment for HIV. The research was supported financially by the Diana Princess of Wales Memorial Fund and they kindly agreed to fund some training of the hospital team after the research had finished. This training took place in September 2010 (see below) and the team are now ready for their mentor. In other hospitals we have found that training per se was not enough to get palliative care off the ground, particularly to overcome the phobias about prescribing morphine. Mentorship by a palliative care expert was one way to overcome this.
Chris starts in April 2011, and we look forward to putting his report on this website in due course.
In January 2011, Charlie Bond, Jane Appleton and Karilyn Collins delivered a week of Toolkit teaching to Aidsrelief (AR) staff in Dar es Salaam. Aidsrelief is a consortium of Catholic Relief Services, Institute of Human Virology, IMA world health (formerly Interchurch Medical Assistance) and Constella Futures and they are the implementers of the PEPFAR HIV care and treatment programme in 15 countries including Tanzania. In Tanzania they are responsible for four regions: Tanga, Mwanza, Mara and Manyara.
The training lasted for five days and 33 members of AR staff attended. At the end of the training it is expected that these staff will monitor and evaluate the palliative care already established in Tanga region and also promote palliative care in the other three regions. PCW has previously been instrumental in training teams in some hospitals in Mwanza and Mara, and AR will help this programme to escalate.
The enthusiasm and active participation in the workshop by the AR staff left the PCW team in no doubt that palliative care was now on the AR agenda and would be part of their routine care and treatment for people with HIV and for other patients in need.
We are grateful to the Diana Princess of Wales Memorial Fund for financing this workshop.
A second training programme based on the Palliative Care Toolkit was held at Mwanza in north-eastern Tanzania from 27th September to 1st October 2010. The course was facilitated by Karilyn Collins and Gillian Chowns. There were 26 participants from the Bugando Medical Centre and the Sekou Toure Hospital, together with two mentors from the UK currently working in these teams. Financial support for this programme came from the Diana, Princess of Wales, Memorial Fund.
The programme is highly participative and places emphasis upon multi-professional working. The teams that took part include doctors, nurses, social workers and pastors.
From 29th October to 8th November 2009 a team from PCW were in north-west Tanzania to conduct a multi-disciplinary training programme in basic palliative care for 27 individuals who comprise three teams working in and around Mwanza. Participants in the course included doctors, nurses, social workers and pastors.
Karilyn Collins, Gillian Chowns and Ruth Wooldridge used the Palliative Care Toolkit as the principal resource for the five-day programme. The Toolkit proved to be a very useful and appropriate resource on which to base the teaching. It addressed all the key topics at a level and in a style that met the participants’ needs and understanding. The three facilitators had all been involved to varying degrees in the concept, writing and production of both the Toolkit and its companion publication, the Toolkit Trainer’s Manual, and therefore had a thorough understanding of its underlying philosophy.
The establishment, and training, of the three district palliative care teams in Shirati, Shinyanga and Geita has been promoted and funded by Tearfund.
In February 2009 Dr Karilyn Collins was invited by Tearfund to accompany them on an assessment of four of their partners in Mwanza Tanzania with a view to introducing palliative care into their programmes. They visited hospitals and home based care facilities in Shinyanga, Geita, Shirati and Ikuzu, looking particularly at the care and treatment of HIV. They found a great need for a more holistic approach, more availability of morphine and training in palliative care, and it is hoped that three of these sites will be a pilot for Toolkit training and introduction of palliative care later this year.
Dr Vicky Lavy and Dr Karilyn Collins, from Palliative Care Works, recently held a one-week workshop teaching basic palliative care using the new Palliative Care Toolkit training manual. There were 17 participants, including doctors, nurses, pharmacists and a social worker, from Bombo Hospital, Tanga (the regional hospital) and Tanga City (three health centres within the city of Tanga ).
The workshop was divided into 90 minute modules, covering topics from team building, communication skills, breaking bad news, spiritual issues and bereavement to pain relief, the use of morphine, dealing with other symptoms, and end of life issues. On the final day the participants enthusiastically planned how they would form their own palliative care teams and implement what they learned in their existing practice. Each participant received a copy of the palliative care toolkit and felt confident in using it.
The toolkit training manual is still under development, and the valuable experience gained from this week will be included in the final version.
On October 23rd 2008 Dr Karilyn Collins of Palliative Care Works met with Dr Marleen De Tavernier, the health programme manager, and Cecile Marchand, the child protection officer, of Save the Children Fund in Tanzania. Karilyn had been commissioned by the Diana, Princess of Wales Memorial Fund to discuss ways in which palliative care could be included in the work that Save the Children was doing in Tanzania. They had a very full and interesting discussion, some outcomes of which are still in the planning stage. Karilyn will be speaking in London on World Aids Day (Dec 1st) to senior administrators of Save the Children Fund about the importance of palliative care for children with HIV/AIDS.
During the Lambeth Conference of the Anglican Communion, held at Canterbury in the United Kingdom, one of our partners, Ruth Wooldridge OBE, addressed a special interest meeting on issues of palliative care. She introduced a number of visiting bishops from sub-saharan Africa to the ‘Palliative Care Toolkit’ which has been developed with the support of ‘Help the Hospices’. It is intended to help in the training of palliative care practitioners in situations where resources are limited.
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