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Esther: My Journey In Palliative Care

Cairdeas
22nd January 2019

My name is Esther Nantongo Muyinga, I am a Registered Nurse currently pursuing a degree in palliative care and at the same time working in Mulago National Referral Hospital, Kampala, Uganda, in the palliative care unit.

Before joining the palliative care unit, I used to work on the wards and I used to come across patients who were challenging in their management, they had complex issues.  Little did I know that the patient is supposed to be managed holistically to achieve quality of care and quality of life.

According to my experience before and after working with palliative care team, I have learned that when a person falls sick, it is not only physical body which is sick but that patients also tend to have other issues surrounding their sicknesses.  If these are not addressed, it can be even more challenging for their health to improve and for healing to occur. 

During my practice I have witnessed patients who don’t want to be discharged, even though the medical personnel may feel they are ok.  And I have witnessed other people who change their faces to look like they are very sick when they see a Nurse or a Doctor coming in.  One person has even whispered to me, ‘talk to the Doctor not to discharge me’ and another one requested me to admit her.  All these circumstances mean that there issues that need to be addressed; issues that might be called psychological, psychosocial, and spiritual. My understanding about this grew after joining the palliative care team.

Have you ever wondered, why after giving a strong analgesic a patient may still remains in much pain?  Or have you ever witnessed a patient who cries in pain after seeing a medical person, yet before he/she was conversing well with fellow patients.  Both might mean there are unaddressed aspect of their lives.

In 2012 I had an opportunity to train as a link-nurse in palliative care for five days, helping to identify patients with palliative care needs on my ward.  After identifying them, I could manage those at Level 1 – Level 1 being those who had symptoms that were easy to manage.  Those I could not manage (Level 2), I consulted with the Doctor. If the patient’s symptoms were becoming more complex another palliative care team member was consulted (that’s Level 3), and when the team member could not manage alone, the whole team was consulted – which was Level 4.  I did that for for four years.

In 2015 I was brought on board and joined the palliative care team, but I felt that I was depending on the little knowledge and skills.  I had a challenge of not being recognized as palliative care personnel as I had no qualifications to show.  Despite having some knowledge and skills, I feared documenting in the patient’s files.

I thank God for the palliative care team because they have been so encouraging to me in taking this degree in palliative care.  I know I will make it with God on my side.  As of the 7thOctober 2018 I have finished writing examinations for the first semester of the first year.  As I learn, I grow and I know I will be of much help in addressing palliative care needs of palliative care patients.

Esther: My Journey In Palliative Care

Esther Nantongo Muyinga, who is currently pursuing a degree in Palliative Care with the support of Cairdeas

Ensuring None Are Left Behind - More on the 2018 Global PC Day

Cairdeas
18th January 2019

We do not intend the Global PC Day, which took place on 29thNovember 2018, to have been a talking shop.  We want to learn from it, and we know that those who came along to share and listen and learn, also want to make a difference.  All of us in the field of palliative care seek to ensure that health inequalities between nations are levelled out and, in keeping with the title of the conference, that ‘none are left behind.’

During the day of the conference, between the individual presentations, there were compelling group discussions that continued, informally, throughout lunchtime. Many had flown in specifically for the conference, bringing direct experience of their overseas work to bear.

Where palliative care sits on the pecking order of health needs was a hot potato for some.  In many low-income countries more generalised healthcare and access basic services is prioritised above palliative care.  There was a discussion about advocacy, lobbying and the opportunities arising from both the WHO Declaration and Lancet Commission Report in advancing the case of the palliative care and in raising it to the level of other important primary health care needs.

An ongoing theme was that of holistic care – treating the whole person by understanding their suffering and building a package of care around their stated needs. This is about listening, it’s about piecing together the jigsaw to meet the needs of the person and not simply the illness.  For example, talking about what matters to the person and asking, “what brings your life meaning?”, and then enabling them to do more of what matters to them was felt to be core to good palliative care.

Despite the strides that have been made in recent years in raising the profile of palliative care, one breakout session discussed the need for ongoing awareness-raising and how further understanding needs to be built to support specialisation in palliative care.

Of course, given the global aspect of the conference, the issue of culture was high on the agenda, and many examples were provided as to how different cultures impact on the work of doctors, nurses, social workers and religious leaders. Learning how to tailor palliative care appropriate to the prevailing culture was deemed key.  For example (but by no means exclusively) within the Muslim culture it can be a challenge to discuss and present a prognosis of having a short time left to live.

Models of integration were discussed.  One of those presenting noted that the World Health Assembly set the policy in 2014, but asked, how we might now integrate this into clinical practice?

Delegates left the conference energised and enthused for the future and with increased determination that they would contribute to more equitable palliative care globally. We look forward to seeing both familiar and new faces at the 2019 Global PC Day when it comes around again at the end of the year.

Ensuring None Are Left Behind - More on the 2018 Global PC Day

Young delegates at the 2018 Global PC Day in Edinburgh - Doctors Hannah, Kerry, Rachael and Grace

Ensuring None Are Left Behind - More on the 2018 Global PC Day

Delegates during one of the breakout sessions

Ensuring None Are Left Behind - More on the 2018 Global PC Day

One of the groups discuss how cultural issues come into play in palliative care

Ensuring None Are Left Behind - More on the 2018 Global PC Day

Victoria is the note taker for group three, deep is discussion

An Overview of the 2018 Global Palliative Care Day - Presentations Now Available

Cairdeas
16th January 2019

A fairly typical cold and wet November day in Edinburgh was significantly brightened for all those who attended the Global Palliative Care Day in St. Catherine’s Argyle Church on the south side of the city.   Jointly organized and run by Cairdeas, The University of Edinburgh’s Global Health Institute and the International Children’s Palliative Care Network (ICPCN), it wasn’t simply the scope of the presentations that made it ‘global’, but the participants from nine different countries, who represented cutting edge palliative care research, policy, and practice from around the world.  Delegates from the UK included primary healthcare researchers, palliative care (PC) Registrars (from London, Manchester, Newcastle and Glasgow), students completing their Masters Programmes in areas related to PC, and GPs and Consultants with specialisms in PC.

Professor Julia Dowling focused on the five key messages of the Lancet Commission Report stressing that, in keeping with the call for universal access, palliative care is notan optional extra.  Given Julia’s background (ICPCN) she understandably has an emphasis on the palliative care needs for children, telling us that $1 million would cover the morphine needs for children globally, a paltry figure in today’s million pound budgets.

Some of the most memorable moments of the day came from the real life stories that were told by in-country doctors such as Dr. Mhoira Leng, Medical Director of Cairdeas. Mhoira told us about Diane, who had end-stage organ failure and leg lesions and was receiving medical treatment in Kampala.  Restricted to a hospital bed, the most important thing for Diane was that she didn't feel abandoned and that she had someone to talk to.  Mhoira told us, “Palliative Care means dignity, and treating Diane as a whole person gave her the dignity she needed.”  Dr. NahlaGafer, who works in Sudan, had similar stories to tell, relaying the words of one patient who told her, “when I come to the clinic, I feel like I am not a sick person – I feel like I am coming to meet my friends.”

In the context of global news, we constantly hear about refugees being refused entry at borders, turned away, ‘contained’, or shunned.  It was heart-lifting, therefore, to listen toDr. Gurswan Purewal present on the her work with the refugee population in Adjumani District in Uganda.  She spoke of how the local population welcomed the refugees, referring to themselves as the ‘host’ population and calling the refugees’ region as a ‘settlement’ as opposed to a ‘camp’.  But behind the semantics, there lies a very real sharing of heath and social care resources between the host population of 240,000 people and 260,000 refugees  – would that we were all so sharing.

The following is a list of the presenters and the topics on which they spoke:

Prof. Julia Downing– Severe Health Related Suffering - a new paradigm in Lancet Commission Report;

Dr. Sebastian Moine– Astana and Palliative Care;

Dr. Mhoira Leng- 10 year evidenced based review from Makerere University and Mulago Hospital (MMPCU), Uganda;

Dr. Dan Munday – Developing and implementing the SPICT-LIS;

Dr. Nahla Gafer– Pioneering palliative care in Sudan;

Joy Kemp– Palliative care and midwifery – commonalities in health partnerships,

Appraisal in the refugee population in Adjumani District in Uganda;

Dr. David Fearon– pioneering palliative care in Mauritania;

Dr. David Butler -PRIME UK Teaching palliative care in different settings; cultural issues;

Dr Gursaran Purewal- Rapid Systems Appraisal in the refugee population in Adjumani District in Uganda;

Dr. Laura Tupper - Lessons from Chile.

All of the presentations have been made publicly available under the resources section of the Cairdeas website – for quick reference follow this link.

An Overview of the 2018 Global Palliative Care Day - Presentations Now Available

Professor Scott Murray, Dr. Nahla Gafer and Professor Julia Dowling deep in conversation during a break in proceedings

An Overview of the 2018 Global Palliative Care Day - Presentations Now Available

Dr Mhoira Leng and Professor Liz Grant

An Overview of the 2018 Global Palliative Care Day - Presentations Now Available

Dr. Sebastian Moine making his presentation

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