Families report feeling safe and supported by the team — 97.3% of respondents. 93.6% rate the services as good and trust the team. Trust is a crucial aspect. Parents know they can contact us anytime, day or night, and receive the help they need. 89.1% agree that attention is given not only to the child’s needs but also to the family’s needs.
The Society for Child Palliative Care ensures the
integrity of the process so that patients and their families do not feel the impact of funding coming from different ministries and receive a complete package of care, regardless of which ministry we are under.
The Society for Child Palliative Care currently has
36 active projects — regional and international. The Society also develops strategic documents.
For the first 20 years, the Society, as a
non-governmental charitable organisation, helped us with many things: transport, fuel, communication, nutritional supplements, and much more. We have worked long and hard to secure government funding for all this.
We have several
educational programmes: for students, healthcare workers, politicians, and the general public. In 2017, we finally introduced a state-level residency programme in palliative care. The programme lasts 11 months and covers both paediatric care (one-third of the programme) and adult care (two-thirds of the programne). We have already trained three teams in different regions. The Liepaja team has been successfully working since 2013.
We also have
programmes for volunteers, a
guide for coping with grief after the loss of a child, and a
training programme for chaplains, which is very new, introduced this year. The first chaplains are already being trained at the Latvian State University, where our chaplains are also teaching.
I want to say a few words about the
educational programme for schoolchildren. We visited several schools where we explained to younger students what illness is and how we can help if there is a sick person in the family. It turned out that children are very responsive; they were happy to talk about this topic, asked questions, and shared their experiences.
We also have a
publishing programme: brochures, booklets, books in Latvian and Russian. There are also documentary and educational films, a YouTube channel, and video instructions on DVDs that we can give to parents, such as how to care for gastrostomies, and much more. We also have a website with a lot of useful information for professionals, families, and anyone interested. Our social media platforms are active, we also share our data there.
An important part of our work is
building a legal framework and securing funding. For example, in 2015, we succeeded in obtaining state funding for children's nutrition. There are many other projects and working groups we participate in to develop hospices and home palliative care.
We also work on
international cooperation in palliative care. The photo below shows the Belarusian children's hospice.
Since 2015, we have actively used telemedicine. When we started, there was no WhatsApp or Zoom yet.
We have a
Respite Care Programme, including camps and meetings. Support groups for parents, siblings, a grief programme, various charity events, concerts, and activities. Every year, we celebrate World Hospice Day. A unique project is
“The Dream Bridge” with Angela Forker. Angela is an American photographer who came from the U.S. four years ago. Ten families have already participated in her project. She creates amazing pictures, each telling a story about a sick child. We held exhibitions in Latvia, Estonia, and Lithuania.
Of course, we also face challenges. The fact that we are under both the Ministry of Healthcare and the Ministry of Welfare complicates organisation. Another big challenge is that hospice services are not available to children. There are no children's hospices in Latvia, so if a child cannot stay at home, there is nowhere to go. Another challenge is the lack of human resources. Finally, there is insufficient awareness among doctors and social workers about what paediatric palliative care is and how it should function.