Q: What is your present job title and can you describe your role within your organisation?
SK: I am the CEO of the national association of children’s hospices in Germany. My role is defined by the statutes and the mission statement of the charity. Therefore, our priorities are around information, advocacy and advice and support to children’s hospice initiatives and children’s hospice services. Above all, at the centre of our activities are the families and their children with life-threatening and life limiting diseases.
We achieve our ‘information to the public’ goals through a strong public presence, through events for the public and the families and through publications; our service mentality and helpline for professionals, families with sick children and people in bereavement who lost a child. Advocacy is a great part of our tasks, we lobby on all levels, in politics and with health insurances to ameliorate the support for child hospice organisations.
I am responsible for all activities, for the development of standards in the child hospice field, for the introduction of quality measurements, and finally, the biggest challenge, to find supporters and donors, to finance all our activities.
Q: Please would you tell us a little about yourself?
SK: Work is my passion, family my life! I live together with my partner in a small village in the black forest. We have two grown up children living with us, a daughter of 17 and a son of 19. Both still go to school, but have learnt to adapt to our busy lives.
We also share the house with the mother of my partner, who had a stroke three years ago. She lost her speech and she cannot move her right arm and leg. Therefore, we experience for ourselves how challenging it is to feel responsible and to organize care for a family member with massive handicaps. My partner is a very loving son for his mother and takes very good care of her.
My biological and beloved daughter lives close to us in Freiburg. She followed my steps to Northern Ireland and gave birth to a very tiny girl, Matilda, three years ago. The ‘wee’ child is the joy of the whole family. She is healthy, despite only weighing 1200 grams at birth. She is a bit spoilt and – maybe due to the prematurity – also very determined! She was blessed with a brother, Leander, just 2 months ago, healthy and heavy and very relaxed. A wonderful grandson for us.
And finally, my greatest friend and joy for the last 10 years, my dog Polly, who listened to all the stories about sick children and just everything that moved my mind, had to leave me only a few weeks ago. I miss her so much and yet, my job is so demanding and involves so much travelling that I just must be sensible and wait until I retire to find a new friend.
If somebody would ask me, what I like doing, I would answer – spending time with my family – picnicking in nature, walking and enjoying the peace around me. I always find solutions when I walk; just walk and walk and walk.
Q: What drew you to work in the field of children’s palliative care, what motivates you to continue and how long have you worked in the field?
SK: As a social worker I experienced working with children in many different fields. I started in a children’s home, then kindergarten, then youth club and finally in a family planning organisation. I met women and families who had to decide on continuing pregnancy with a severely handicapped foetus.
About 15 years ago my nephew died at only 2,5 years of age. Lovis was a lovely and healthy boy and he just died. This trauma motivated me to get involved in palliative care for children. There was no help available in Germany, no specialised group, just nothing but the helplessness of the whole family. When this happened, it turned my life upside down.
It took me one year to reflect on my attitude towards dying and I finally realised that this was a subject I have been growing up with. At the same time, I started counselling a children’s hospice project until the advertisement for the freelance post of CEO for the national association of children’s hospices just caught my heart and soul. There was the light, the passion, the job of my life – and it still is.
Q: Can you describe what it meant to you to be invited to take over as Chair of the ICPCN Board of Trustees?
SK: Somehow or another, I always felt that it could not be true. How can I be chosen for an important role like this? I am only a social worker, not a doctor or a nurse. It was such an honour therefore, and I am struggling to find the right way to contribute. However, I just will give my utmost to do a good job – and as you know – I am used to big challenges – remember the ghost who motivates me!
Q:You have been with ICPCN since its inception in 2005. What role do you believe the organisation has in the development and growth of children’s palliative care globally?
SK: When I joined the ICPCN, I did so because I am convinced that children in such difficult situations must have a strong lobby. And children are children, anywhere in the world. They have the same rights. And when children are weak, they have even more rights to be supported. It takes global advocacy to develop a sensibility towards the weakest ones of our society. And how else can we make a difference, if not when we act in solidarity all over the world?
ICPCN has raised a great deal of awareness, has helped initiatives to change the world around them. Only a global player like the ICPCN can reach out to the whole world to make it a better world for the estimated 21 million children without adequate palliative care. I do believe that information, education and advocacy must be centralised to enable us to reach out. We are one world, and children are children, no matter where they are born and what they are born into. And we all can do something to make it better – just do one thing for the 21 million children!
Q: What would you like to see ICPCN achieve as an organisation going forward?
SK: ICPCN must become known everywhere in the world. With our online courses on paediatric palliative care we have made a good start, yet, we still have to struggle to finance everything. ICPCN should become the CHANGE ORGANISATION concerning children’s palliative care. In the best case, we become the central competence organisation where people from all over the world can turn to in order to find support. Every government and their health departments in particular, should know about us and ask members of the ICPCN to support them in political health decisions about palliative care.
And, although this all sounds like a dream, things can only change if we believe in dreams. And while writing this, one could go even further into the ‘dream world’ and wish that an organisation like the ICPCN will make itself ‘redundant’. This would be the greatest fulfilment – no more sick children who must die far too early!
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