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World Health Organization Executive Board must measure what matters and involve direct stakeholders in healthcare policy decisions

Author: Huyaam Samuels, WHPCA volunteer, PatchSA Ambassador
19 January 2018

The annual Executive Board meeting of the World Health Organization will take place between 22 and 28 January 2018.

The Executive Board meets at least twice per year to set the agenda for the World Health Assembly (WHA) in May and to make sure that decisions made at the WHA are implemented.

Palliative care is a marginalised aspect of healthcare, and palliative care advocates face a constant battle to keep it on the global health agenda.

Part of this work is to attend the Executive Board meeting each January to make sure that palliative care is included in the discussions around healthcare issues relevant to palliative care. These include: cancer and other non-communicable diseases, dementia, ageing and access to medicines, among others.

But what does this all mean for the people that the WHO is designed to serve? Why is it important to someone like me – living with a life-limiting illness in need of palliative care and effective pain management – that the WHO remembers palliative care?

I have a rare condition requiring palliative care.

Recently, I experienced a severe back spasm in which my back muscles contracted against my spine causing it to twist into a different shape.

We also discovered that within my lumbar (lower back section) my facet joints decided they want to be friends and hold hands – they were rubbing up against each other.

This is extremely painful and I had to be hospitalised from Christmas Eve for three days. I returned home, only to be rushed back into hospital again on 29 December to receive urgent medical care within the Intensive Care Unit where I stayed for two weeks.

Sadly, due to lack of education around palliative care within the health system, I have had unpleasant experiences in hospital before. I was wary of how the nurses and other attending doctors would be taking care of me but I am thankful they made my stay very pleasant.  

I spent New Year’s educating nurses on my rare condition and how important palliative care is in my life.

During this time, I had two ambulance rides between hospitals – I had nine drips in my hands and arms. However, this all collapsed within a day or two due to my weak connective tissue and collagen disorder.

I had my first central line drip (CVP) inserted and this was much comfier than a painful drip in my arm or hand.

The recognition and questioning of hospital staff wanting to learn shows how important it is that there is on-going education in palliative care for all medical professionals.

Is it so important the government implements policies to integrate palliative care into health professionals’ education and the healthcare system.

Having the correct medication, include strong pain medication is essential for me. But why is it such a struggle each and every time I go to the pharmacy?

Opioids such as morphine, as well as other medication, including Valium, Amitriptyline, Ibuprofen and many others keep me going on a daily basis. But the moment the pharmacist sees my script and my high scheduled medications; they often think I am addicted.

It is a constant battle fighting for medication and fighting each day to manage or experience a proper day without constant pain due to all the conditions we face as people with illnesses needing palliative care. 

There should be NO struggle. We need these medications. In essence these medications help us live. They are what keeps us grounded and able to live another day, accomplish another small goal and they keep our health manageable at home.

We cannot afford to be hospitalised consistently or be completely home bound. It is our RIGHT to access proper and full healthcare including the medication needed to manage our condition.

Palliative care is included in the definition of Universal Health Coverage, part of Sustainable Development Goal (SDG) 3: Good Health and Wellbeing. As such, it should be a priority for governments reporting back to the UN on their progress towards the SDGs.

We know that what gets measured gets done! At the moment, there is no indicator that measures palliative care in the SDG monitoring framework. There is no target and no guidance on what governments should count to see whether the people in their country have access to palliative care if they need it.

If there is no indicator, then the WHO will not measure palliative care as part of their impact framework, countries will not report on it, and resources will be assigned to other healthcare issues, leaving palliative care, and the people who need it, behind.

As a direct palliative care stakeholder, I ask that the WHO listen to me and others needing palliative care. We are the people who will have to live with the results of the decisions made at these meetings. It is imperative that our voice is heard!

Last year, I sent a statement to be read by Dr Jim Cleary, a Trustee of the Worldwide Hospice Palliative Care Alliance at the Special Session of the Executive board of the WHO in November.

Thankfully, my statement was well heard along with other interventions by people and palliative care organisations globally.

Palliative care is now included in the latest draft of the new WHO Programme of Work for the next four years.

Together we can work towards one very important but achievable target globally, and a palliative care indicator can be achieved. But this is not enough!

Direct stakeholders like myself should be involved in the process of global advocacy around healthcare decision-making. There are relatively simple ways to do this.

I would like to be regularly informed of meeting topics within WHO, so that I can contribute my opinion as a global patient advocate and patient activist.

It would be my honour to continue to be approached by governmental, inter-governmental and non-governmental organisations to contribute to the global healthcare decision-making process on palliative care.

It is also important that, as direct palliative care stakeholders, we have a voice in the media. I have written for national media outlets in my home country of South Africa, and would like to do more of this work. I continuously speak out on social media about patient empowerment as a global patient advocate and activist.

Perhaps one day, I could be sitting in the headquarters of WHO, expressing our concerns as patients and fighting for our rights! This would give WHO the chance to see not only that patient empowerment is important, but that it is because of having palliative care in my life that I am sitting there.

It is highly important that we are involved in decisions affecting OUR future. If we do not stand up for ourselves now, what will happen to us? The healthcare system and our governments will be failing us.

Follow me on Facebook: Huyaam Samuels, Instagram-@huyaam_s and Twitter @HuyaamSamuels 

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