Tag Archives: Worldwide Hospice Palliative Care Alliance

Dementia and Palliative Care

On Day 5 of the World Health Assembly (WHA), our Chair read out a statement with the Worldwide Hospice Palliative Care Alliance (WHPCA), also ensuring dementia was represented at the WHA, and included in the discussions on palliative care and hospice. DAI was honoured to be able to work with the WHPCA, and to read out the joint statement.

Until quite recently, it was believed peole with dementia didn’t feel pain, and we did not even qualify for palliative care or admission to a hospice unit. We now know this to be wrong, for it to be a breach of human rights, and thankfully, there has been much advocacy by many individuals and organisatons to ensure palliative care is provided for people with dementia. You can watch Kate Swaffer’s short speech below (all speeches were shortened significantly, due to the session that day running over time).

Day 4 World Health Assembly #WHA71

This blog outlines the presentation being given in Committee Room A at th Palais de Nations on Day 4 of the Seventy First World Health Assembly in Geneva. Many members waited and watched patiently to watch it yesterday, which tehnically is a statement to support the Worldwide Hospice Palliative Care Alliance, but as the agenda is very ‘fluid’ here, a bit like Parliamentary sittings, it was moved to today.

DAI is working with this organisation, to ensure Palliative Care is provided for all people ith dementia, even though currently, globally, only 10% of ALL people requiring palliative care receive it. I am a member of their direct stakeholder committee, working on a project around strengthening the voice of direct stakeholders. It is wonderful peole with dementia are now being invited to be involved in working on so many different topics, all of which effect them directly.

When my father in law was dying in the later stages of Lewy Body Dementia, in a Long Term Care facility, he was denied palliative care, due to his age, but more specifically, due to having dementia. It was not only a breach of his human right to end of life care, it was devastating for those of us how loved him, watching on from the sidelines. It was once even taught, and believed that people with dementia did not feel pain!! So, presenting on Palliative care for all, is important.

My speech notes, prepared primarily by the Executive Director of
Worldwide Hospice Palliative Care Alliance, Stephen Connor, for the Session on the Non Communicable Diseases and High Level Meeting in New York is outlined below. However, we have just been advised we may not come up on the Agenda until late this evening, if at all!

Dear Chair:

None of us in this room want to suffer* ourselves or see our friends and family suffer because of a lack of palliative care for ​conditions such as cancer, dementia, COPD and heart disease when cure is not possible. Palliative care is a fundamental part of Universal Health Coverage and the continuum of care for people living with non-communicable diseases. Avoidable suffering of people with non-communicable diseases can be addressed through an extremely cost-effective package of palliative care as outlined in the Lancet Commission on Palliative Care and Pain Relief. This package costs as a little as $3 per capita in low and middle income countries. The UN General Assembly on Non-Communicable Diseases is an opportunity to revisit how well we have done in building access to these essential, and often neglected, services as outlined in the Global Action Plan and the monitoring and evaluation framework. In addition, we should look forward to ensuring an essential package of palliative care to reduce suffering, improve outcomes and increase health system efficiencies. Palliative care is a universal issue that affects all of us at some point. The availability of palliative care could be an indicator for the strength of a health system – which seeks not only to reduce the presence of disease but also in line with the principles of WHO’s constitution – to ensure physical, mental and social well-being – even when conditions cannot be cured. Take if from someone living with dementia, let’s make the cost effective essential package of palliative care available to those who need it.

Thank you,

Kate Swaffer

On Behalf of Worldwide Hospice Palliative Care Alliance

Footnote: *The use of the word suffer or suffering used in this speech, is not referring to the lied experince of dementia, but rather, to the suffering caused by the lack of access to palliative care.

 

 

One day until the 71st World Health Assembly

The 71st session of the World Health Assembly officially opens on Monday 21 May. Although the official agenda does not begin until Monday, the action starts days before.

DAI is working more closely with the NCD Alliance and many other organisations, now also including the Worldwide Hospice Palliative Care Alliance (WHPCA), and we will be joining the NCD Alliance #ENOUGH Campaigns this week, and the many activites of the WHPCA. As dementia is a non communicable disease (NCD), and we have ahuman right to appropriate palliative care, these are important for us all.

Here are two of the #NCD Alliance campaign messages:

ENOUGH:  Time to translate commitments to action for NCDs. At #WHA71 we must put people 1st, make #NCDs an investment priority backed up with evidence-based policies, protect children from obesity and give all #PLWNCDs access to treatment #enoughNCDs #beatNCDs
Calling all leaders at #WHA71. We have had ENOUGH. We want and need you to commit to putting people first by involving #PLWNCDs in the decision making process. Our health is our right, and all people need action to protect it right now! #enoughNCDs #beatNCDs #NCDvoices

Below is a list of some of the meetings DAI is attending and the many interesting side-events throughout the week:

  • 20/5 – 10:30 amWalk the Talk: The Health for All Challenge – walk or run – led by WHO
  • 20/5 – 18:00 – 19:30 pm – Panel discussion on Saving Lives, Spending Less: A Strategic Response to Noncommunicable Diseases
  • 21/5 – 9:00 am – Opening of the World Health Assembly
  • 21/5 – 10:30 – 11 am – NCD Alliance meeting
  • 21/5 – 2:30 & 4:00 pm – Meetings with the WHO
  • 21/5 – 18:00 – 19:45 – NCD Alliance Side Event: ENOUGH. Making 2018 the year for action and accountability on NCDs
  • 22/5 – 17.00-19.00 – Global Rehabilitation Alliance Meeting
  • 22/5 – 18:00 pm – Taking Civil Society Engagement to New Heights
  • 23/5 – 8am – 11am – WHO Civil Society Working Group on the third High-level Meeting of the UN General Assembly on NCDs
  • 23/5 – 16:30 pm – From the Ground Up: NCDs, TB and Resilient Health Systems
  • 23/5 – 19:00-19:50 – ADI Side Event: Mobilising Society: Inspiration for developing national responses to dementia
  • 24/5 – 7:30 am – Changing the Story: Creating a New Obesity Narrative
  • 24/5 – 12:30 pm – Reducing Sugar, Salt and Fat to Prevent NCDs: Bold Initiatives and Success Stories
  • 24/5 – 16:30 pm – Human Rights in Global Health
  • 24/5 – 8 -10 am – Global Health Council, Living Goods, IntraHealth International, Frontline Health Workers Coalition – Diverse Pathways and Partnerships to Universal Health Coverage

Other involvement including times and days to be advised in our role working with  Worldwide Hospice Palliative Care Alliance,  are based on their goal to “To build increased commitment for an essential package of palliative care as part of UHC amongst WHO and member states”. 

I’ll do my best to keep DAI members and supporters updated each day, as the Assembly progresses and outcomes from the many meetings and Side Events I am involved in take place.

Kate Swaffer, DAI Chair, CEO & Co-founder
#WorkingForAllPeopleWithDementia