In this editorial, Dr Kokou Happy Agoudavi, Togo's National NCD Programme Coordinator, writes on why Togo's healthcare system needs palliative care to address the psychological and spiritual needs of patients.
There is a real gap in the health system of Togo in regards to in palliative care. From the fear among Togolese doctors to prescribe morphine to a lack of competence among paramedics in supporting patients living with a chronic disease such as cancer and their families, the gap is prevalent.
This simply means that in Togo, patients living with Non-Communicable Diseases (NCDs) are often abandoned to their own fate. Initiatives and resources dedicated to healthcare are more oriented towards the fight against infectious diseases.
However, it is obvious that pain and the feeling of being abandoned, does not contribute to the recovery of the patient. This is the cross and banner for patients living with NCDs such as cancer. In addition to the psychological trauma caused by the knowledge of their prognosis, there is poor pain management in our health facilities.
Patients living with cancer still sometimes face the indifference of health workers, which often consider them as a 'burden'. This is the sad reality; humanism seems to leave our facilities in the face of high workloads and insufficient training. This creates and reinforces patients' use of care from traditional healers and pastors.
Indeed, some paramedics do not hesitate to affirm that their patient's illness does not fall within the competence of modern medicine, and that they should go to "seek the causes of their disease elsewhere", or turn toward spiritism or fetishism.
Thus, for lack of competence in palliative care in our health centres, many patients are now in the convent or in prayers centres to be "exorcised" or "unbewitched" from the "evil that is bothering them".
Is not the patient's use of traditional healers and pastors after a hospital stay, a manifestation of the lack of holistic care in our health facilities? Isn't it evidence of the need for the integration of palliative care in the minimum primary health care package? How long are we going to beat around the bush?
Togo, more than ever, needs to be accompanied in this new practice of medicine. Our brothers and sisters living with a chronic disease such as cancer have also the right to be supported, to be accompanied. It is time to put a little "heart" in our health facilities! The time for palliative care in Togo is ripe, it is now!
In part two of this series on sustaining palliative care in Africa, Emilly Kemigisha guides grassroots health care providers on how to measure the impact of their services.
In setting up a good monitoring and evaluation (M&E) system for any institution/organisation, the starting point is to know what you want to do, where you want to go, what you want to achieve, how you plan to achieve it and in what period of time. There must be a clear understanding of these elements as they are foundational to a good M&E system. "Project design" is the jargon that M&E gurus use for this.
Step #1: Defining achievement of the project's goal
This step defines how you are going to know that you are on the right track (the gurus call this "indicators") which means, how do you know you are doing the right thing and working towards your overall goal.
Indicators are measured at different levels: as objectives, results and activities (the gurus call these the impact, outcome, output and process indicators). In other words, how will you know that you are:
- heading in the right direction when you are carrying out activities (process indicators)
- when you have completed any activity (output indicators)
- that you have achieved your set objective (outcome indicators)
- that you have made the change you intended to make (impact indicators).
Step #2: Gathering support documentation
Once you know where you want to go and how you would know that you are there, the next step is to explore how your institution is are going to keep records or collect the data to best check or monitor these indicators. Monitoring performance or measuring progress is what the gurus call it.
There are many different ways to do this, and different donors use different tools to do this. This is an important step as mentioned in part 1 of this series.
Step 3: Making use of the information you have gathered
Once there is a clear record of progress on the set objectives, the next step is to use that information to inform your next strategy. This is known as data utilisation or data use. It is useless to collect data and go through all these steps if the data is not going to be used to improve programming. Therefore, this is an important step in a good M&E system.
Periodic reviews to assess performance must be done and the information should be used to lay new strategies, and to refocus the project as needed. Documentation of all the lessons learnt are useful for future programming.
All these steps are summarised in various M&E frameworks and documents such as logical framework, M&E plans, performance monitoring plans, detailed implementation plans, indicator protocols, to mention but a few.
Once you start with the basics and a strong right foundation, then M&E systems are more understandable and readily usable by organisational staff members.
So are you an M&E expert after all?
Do you have any questions around M&E that you'd like to see addressed in the Africa edition of ehospice? Email us here and we'll cover the topic.
In part one of this series on sustaining palliative care in Africa, we'll demystify common perceptions around Monitoring & Evaluation (M&E) on the continent. What are some of the most common apprehensions around M&E in Africa – where funding is limited but expectations for it run high?
The idea of someone "monitoring" our work and "evaluating" it invokes a reserved response, at best.
On a quest to understand how organisations perceive and grapple with M&E workloads, Emilly Kemigisha, Senior Programme Officer, M&E at the African Palliative Care Association, contacted African hospice and palliative care organisations to learn: (a) how they strategise to address M&E gaps, and (b) what reporting mechanisms they already have in place. Here are two of the most common responses she received:
The issue: 'We do not have any M&E systems and structures in place at all! We could use all the support we can get'
The response: Asked whether the organisation was able to record any of their patient's information, one M&E manager affirmed that very single detail of information considered useful is recorded and used to prepare reports for dissemination to stakeholders.
The reality: The organisation not only has M&E reporting structures in place, but they go a step further to conduct a 'basic analysis' - using that information to plan for patient support, an essential component to M&E implementation.
The issue: 'A good M&E system is one with a web based data management system'
The response: While a web based data management system is useful for improving access to information and improving the sharing of data, it is not the sole basis for a good M&E system.
The M&E officer stated that service providers are not motivated to collect the data and also lack an understanding on why data collection is important to their work. On this premise, a web based system may not come in as the immediate solution until the underlying issues are sorted. If the primary tools are not filled out, then what information will be fed into that universal web based system?
The reality: M&E is a something that everyone does in their day to day work – whether through a business, school, health facility or even in larger institutions such as telecommunications companies, churches, etc. However, most of us do monitoring and evaluation without realising that what we are doing is M&E - or if we do, we have complicated it with too many theories, frameworks and tools.
The moment you are able to state what business you have transacted or service you have provided in a specific period of time, you have monitored your activities for that particular period.
If you go so far as to record those details on the relevant documents, then you have even gone a step further in your monitoring by providing evidence of these activities or services.
In setting up a strong M&E infrastructure for any institution/organisation, the starting points are to:
- know what you want to do
- where you want to go
- what you want to achieve
- how you plan to achieve it
- and in what period of time.
But more on that next time we evaluate the impact of this series...
Do you have any questions around M&E that you'd like to see addressed in the Africa edition of ehospice? Email us here and we'll cover the topic.
The Prague Charter petition has been launched to raise awareness for palliative care as a human right beyond the palliative care community.
To mark International Human Rights Day on 10 December, the Worldwide Palliative Care Alliance together with the European Association for Palliative Care, the International Association for Hospice and Palliative Care and Human Rights Watch has launched the Prague Charter to raise awareness for palliative care as a human right beyond the palliative care community. An online petition has also been launched.
The Prague Charter calls on governments to relieve suffering and recognise palliative care as a human right by:
- developing health policies that address the needs of patients with life-limiting or terminal illnesses.
- ensuring access to essential medicines, including controlled medications, to all who need them.
- ensuring that healthcare workers receive adequate training on palliative care and pain management at undergraduate and subsequent levels.
- ensuring the integration of palliative care into healthcare systems at all levels.
Sign the petition which aims to build single voices into one loud voice.
On this year's Human Rights Day, the spotlight is on the rights of all people — women, youth, minorities, persons with disabilities, indigenous people, the poor and marginalised — to make their voices heard in public life and be included in political decision-making.
In an article published on the APCA website, former APCA executive director, Dr Faith Mwangi-Powell, highlighted a key advancement in promoting palliative care as a human right through a side-event during the 17th Session of the Human Rights Council meeting in 2011.
Backed by Brazil and Uruguay and funded by the Open Society Foundation, the event 'Access to palliative care; a neglected component of the right to health' was monumental in advancing palliative care into the global debate toward its integration into a human rights framework.
In Africa, the palliative care response has grown at a steady pace over the last few years. How that care is provided and what resources are brought to its fulfillment varies enormously across the continent.
Cognisant of discrepancies in standards of care for people with life limiting conditions, palliative care providers across the globe have articulated a simple, but challenging proposition: that palliative care is an international human right.
Watch this Life Before Death video showcasing the need to reinforce pain control as a human right, both in Africa and around the world.
The Diana, Princess of Wales Memorial Fund (the Fund) announced that as part of its planned closure, it has awarded £3.14 million in legacy grants to organisations whose work is continuing to improve the lives of disadvantaged people around the world.
In Africa, 19 organisations working in palliative care in seven African countries have been awarded.
Speaking about the legacy grants, the Fund's Chief Executive, Dr Astrid Bonfield said:
"Our aim is that these grants will help enable recipient organisations to keep building on the many successes they've achieved to date and help them to continue to create positive, long-term social change that helps generations to come."
The Fund also announced that The Royal Foundation of The Duke and Duchess of Cambridge and Prince Harry (the Royal Foundation) has agreed to become the legal owner of the Fund after it operationally closes at the end of 2012.
Nick Booth, Chief Executive of The Royal Foundation of The Duke and Duchess of Cambridge and Prince Harry said:
"We feel it is appropriate and important that the Royal Foundation becomes the legal owner of the Fund after its planned closure, to ensure both the Fund's name is safeguarded and any future income donated to the Fund is able to be spent on charitable causes."
Since 1997 the Fund, which will cease to operate in December 2012 after 15 years of grantmaking, has given over £100 million to charitable causes and supported more than 400 organisations in every continent across the globe.
The decision to cease operating was confirmed by the Fund in 2007, at the launch of a five-year Strategic Plan, which set out how it intended to use - or "spend-out" - its remaining resources on an ambitious, time-limited programme aimed at creating long-term social change.
As part of the preparations for closure, the Directors of the Fund's Trustee Company have been very keen to ensure that if any money is donated to the Fund after its operations have ceased, this money is not lost to charity and instead continues to make a positive difference to people's lives.
Over the past five years, the Fund has spent almost £25 million on working with partner organisations to secure sustainable improvements in the lives of countless numbers of people with HIV/AIDS, cancer and other life-limiting illness in sub-Saharan Africa; child refugees and young people seeking asylum in the UK; vulnerable people in the criminal justice system in the UK; and individuals and families around the world affected by the use of cluster munitions and other explosive remnants of war.
Further details about the Fund's approach to its closure are available to download via a Fund briefing published on the Fund's website.
Android apps can make the work of a health worker conducting home-based visits a lot easier to track and document.
Here are our "Top 5" recommendations for free apps based on functionality and availability for easy download.
1. Jorte: customized calendar to track appointments and meetings
Jorte is a user-friendly calendar app that allows users to customize their viewing options and boasts an easy to use interface. It is easily synced with Google's calendar making it simple to sync schedules and meetings. Jorte can also be used to set reminders and map out routes to appointments and meetings using Google Maps.
2. Mileage: tracking gas mileage
Mileage is an app that tracks petrol usage, miles per liter, and mileage history which is helpful for organisations engaged in regular field visits. The app prompts reminders of regular vehicle maintenance, and provides other useful statistics such as petrol prices.
3. Evernote: store and share information
The power of Evernote, an app that is used for sharing and organising data, is in the wide array of data that can be added to the notes including text, photos, or audio. This allows practitioners to easily make notes, make use photos for documentation, save dictations, and track symptom progression.
Information is stored in a 'note' which is then stored in 'notebooks' that function as folders. Both notes and notebooks can be shared or remain private and automatically sync to a cloud for easy access via all mobiles and computers synced to the accounts. Notes can also be shared via email.
4. Instagram: capture, edit and share photos
Instagram can help a health care worker to quickly capture, edit, and share photos with relevant colleagues which can be used for promotional material regarding services provided. Health care workers need to be conscious of privacy settings in Instagram, to ensure they are not available to the public, but that settings are marked as "private" for internal organisational use.
5. Skyscape - tool for self-education
Skyscape Medical Resources is a 'one-stop' medical app that provides medication descriptions; a medical calculator; MedAlert, which offers summaries of current medical articles, news and research.
Have you used any other android app that have been helpful in your palliative care work? Share them with us here.
Jean Starvis, a community health nurse in South Africa, shares the compelling story of one of her patients, Rosie, in her struggle to overcome pancreatic cancer pain.
Her name is Rosie – she is fifty five years old, lives in Ocean View, loves to read, Dolly Parton and Kenny Rogers are her favourite singers and she has pancreatic cancer.
Rosie lives in a caravan in front of an apartment block in Ocean View, a windswept, economically challenged suburb in the south peninsula of Cape Town. It lies between the more affluent areas of Kommetjie and Fish Hoek. Rosie's little caravan is fastidiously neat, with a rail for sparse clothing above the bed and a tiny cooking area. There is no running water or toilet facility, which is very tricky for a sick person. The caravan is sauna-like in summer and almost has icicles from the roof in winter – everything is extreme.
Rosie started her chemo earlier this year and managed the inevitable side effects with typical stoicism. She felt horrible all the time (this was how she described it to me) but she cried tears of regret when she was told that the treatment was ineffective and would be stopped.
Read more about Rosie's story on the South African edition of ehospice.
We are pleased to announce that APCA's 2013 conference will be held in Johannesburg, South Africa, in partnership with the Hospice Palliative Care Association of South Africa (HPCA) on 17-20 September 2013.
As this will be APCA's fourth triennial conference, we invite you to experience new engaging insights into patient-centric palliative care delivery and to enjoy the networking opportunities the conference provides.
Forefront to our preparations is the aim of developing new partnerships that would attract members of the global health community who may have not had direct exposure to palliative care in their field of work.
We are also expanding our target audience to include partners from Francophone and Lusophone countries that have traditionally had low participation in the global palliative care dialogue. We look forward to sharing this opportunity for learning and collaboration with our African and international partners.
If you are interested in participating in the conference, funding a workshop participant or a track, or suggesting workshop session themes, please contact us: firstname.lastname@example.org.
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