The Worldwide Hospice Palliative Care Alliance
I am Sharon Thompson, an author from Ireland and here with the Worldwide Hospice Palliative Care Alliance.
In 2011, I gave birth to our beautiful girl Victoria. At the age of 3 months she became very unwell, at 6 months she was diagnosed with a rare NCD. No treatment was possible. Victoria had no nerve insulation which meant that she suffered from extreme pain all the time.
Despite being surrounded in care for Victoria’s birth, when we found out Victoria would die, we had to fight for the medical support she needed.
We were sent home but there were no palliative care nurses, we lacked confidence and we lacked equipment.
But, we fought for palliative care and Victoria got it. She had symptom management and a safe death at 9 months old.
Because of the palliative care Victoria received I can talk to you now, work, support other mothers like me and live well. Our family do not have to grapple with the memories of Victoria living and dying in pain. We have no regrets.
I do not really use the term ‘UHC’ but I know what it means. And I know that worldwide mothers like me are being sent home alone with their life-limited children in pain with no support.
Through my experience as a mother of a life-limited child, I know at a minimum we need nurses trained in palliative care, equipment and medicines in the community and support for family members.
I thank WHO for their inclusion of palliative care in the impact framework. An essential package of palliative care as part of UHC is low cost. As your budgets ensure care for people at birth so they must ensure palliative care for those towards the end of the lives … and this includes our children.