In 2015, Sharon Thompson, from Donegal, Ireland, shared the story of her daughter, Victoria, in a series entitled: Palliative stories from the perspective of patients and family carers published on the EAPC blog. Last month, Sharon’s passionate advocacy work for children with life-limiting conditions or complex care needs took her to Geneva to share her story at the highest level.
Our angel Victoria led us to Geneva and the 144th World Health Organization (WHO) executive board meeting in January 2019. I was invited to speak about the need for palliative care worldwide by The Worldwide Hospice Palliative Care Alliance (WHPCA).
Applications to speak/intervene from international organisations (or NSAs – non-state actors) are placed at the end of packed WHO agendas. Then we simply wait and be grateful for the time we might be allowed. If the NSAs do get to speak, there are two chairs for us to take turns on, right at the back, near the busy door. You get the picture … After two and a half days of waiting in a hot gallery, the WHO heard my two-minute intervention.
I could go on about the building, the amazing interpreters and the dancing. Yup, dancing. After a few hours, the world health leaders get up to move or dance for approximately two minutes. (Can you picture it?) But instead of lingering on these unusual details, I want to share some meaningful facts that I voiced at the meeting.
There are an estimated 3,800 mothers of life-limited children in Ireland. I wanted the WHO to know about their 24-hour, 365 days struggle
- If parents do happen to secure government-funded nursing care, they are hit with the job of finding and organising nursing care themselves, this is on top of the loco parentis rule, which means parents cannot leave their home while a HSE (Health Service Executive) nurse is present!
- A child’s equipment and care package will more than likely depend on their geographical location, their community nurse, how much a parent fights/goes to the media, on local political will and family support structure. It will have very little to do with the severity of the child’s condition.
- The cost of equipment for life-limited children is extortionate. Applying for it is a long and arduous process through the public health system. Most families try to purchase equipment themselves.
- Families have untold, huge financial hardship and this continues into bereavement.
- There are no, or very few, free state palliative care services for children that automatically visit. Most are fought for. If there is a children’s palliative care nurse, all responsibility and symptom management falls to him or her, as the majority of families are encouraged or, in some cases, forced to take their child home.
- If the primary carer for a child becomes ill themselves, there is no crisis care system in place to help care for their child.
- Parents must suddenly, overnight, become nurses. They have to come to terms with medications, terminology and terrible symptoms, while actively grieving and running a family home.
- It’s more than likely that parents will have to research and ask for pain and other medications for their child when their condition is deteriorating.
- There are also social housing restrictions for those with a life-limited child.
- We are told that there is a national development committee for children’s palliative care in Ireland but I’ve no idea what it does. It seems to have no or not much communication with the general public. Could members of this committee let us know – what is the national policy for children’s palliative care development in Ireland?
- There is little or no consistent counselling, bereavement care or mental health support for families.
- Having private health insurance is of little benefit and there are very few people who you can pay for the care a child needs.
- If your child’s condition deteriorates you may have to sit in a crowded Accident and Emergency department for hours and you will be told that your child should die at home.
- The whole idea of parental/patient involvement is new in the world of health.
- Children’s palliative care is also a new specialty.
I am in contact with hundreds of mothers and all of this reflects their experiences. These are points that need to be heard.
So… when I got to the WHO for those precious two minutes, was I glad that we went?
Yes, I am glad. Victoria’s message was heard through all of the posturing and politics. Magically, I got to briefly meet with Dr Tedros, the Director-General of the WHO. (Massive thanks to Dr Mike Ryan, who introduced us to Dr Tedros; also sincere gratitude to the WHPCA who provided the support and funding for me to attend the WHO).
Now, a month on, my husband Brian and I ask, can our baby girl’s legacy make a difference to the world?
Maybe – as Dr Tedros and other powerful delegates said that they would remember Victoria’s message.
Can you hear it?
We ask that budgets, plans and policies around the world have consistent, proper palliative care for all, including children, as part of universal health coverage.
- Read Sharon’s earlier post: The magic of Victoria: Palliative Stories – the EAPC’s blog series from the perspective of patients and family carers.
- The European Association for Palliative Care (EAPC) Children and Young People Task Force.
Save the date! These two seminars at the 16th EAPC World Congress in Berlin may be of interest …
Join Sharon Thompson in a Meet the Expert session: Enabling the Voice of Patients, Carers and Family Members to improve Advocacy on Access to Palliative Care Saturday 25 May at 08:00 to 08:45. Download the full congress programme here.
This session will highlight the importance of empowering patients and families in paediatric palliative care. This will be reviewed from a range of perspectives and during this session we will explore how this can make a difference personally, through powerful advocacy and by influencing change at a national level. We challenge the concept that palliative care puts the family at the centre of care and in this interactive session we will hear strong personal stories.
Global challenges in Paediatric Palliative Care: An EAPC Seminar, Thursday May 23, 2019 at 08:00 to 18:15. Download the programme here. Delegates who wish to attend only the Paediatric Palliative Care Seminar pay a day rate. Register here.