What would motivate someone to start up a support service for parents of premature babies, sick and disabled children? What qualities would you need to successfully start an aid organisation, and to see it continuously grow?
L&R has been supporting the Bunte Kreis since 2016 by sponsoring its flashlight concert. The event takes place each year in Koblenz, and offers parents and children a varied evening programme of concerts with light shows, and a wider programme of entertainment. Thousands of people in Koblenz and the surrounding area attend the event, and find out about the valuable work of the Bunte Kreis.
Take your fate into your own hands - for yourself and others
Until the early 2000s, most parents of premature babies or seriously ill or disabled children in Germany had no right by law to follow-up care with socio-medical services.
“What that really means is that nobody tells you about the support that is already there, such as disability ID cards, the different ‘degrees of care requirement’, personal support from professional groups, important treatment measures available, information about illnesses, or support from psychologically trained staff,”
The emotional state of emergency continues, evolving to become a sinister, seemingly never-ending burden, in addition to the strain that caring for a poorly child will already put on parents.
“Our son had real problems with swallowing. At the beginning, we didn't know which treatments would be suitable for us, which would be of most benefit, and which would be covered by the health insurance companies. He also had an extremely difficult time in kindergarten as his emotional and social problems were not being recognised there; on the contrary, he was often ostracised. As a mother, that's the worst part: this type of ignorance, followed closely by my own feelings of helplessness.”
So how did we deal with the situation? Many people simply submit to the circumstances created by this gap in social provision, and either get no help, or have to fight for support by themselves. Few parents have the willpower, strength, perseverance, know-how and the right connections to become an active participant, even stepping up to defend other affected parents.
When expecting parents picture the last few weeks of pregnancy, the birth and the weeks to follow with a new baby on board, they probably think of a big belly, big smiles all round, nervousness before the big day, and that special moment when they can hold their newborn child in their arms. What do we not tend to think about? Lying in hospital for weeks so that the baby can remain in the womb for longer, or pain, or fear, an involuntary Caesarean section, a trip to the paediatric ICU, being separated from your child for what feels like an eternity, loneliness, or the panic that you might lose your child, or not be able to develop a bond with him or her. The hope, that you might finally be able to return home. And once you’re there? Feelings of being alone, and falling into a hopeless abyss. Not knowing what kind of help you are entitled to, how, and who, to reach out to for support, whether it be on a personal, financial, treatment, or psychological level.
Inka Orth knows this Odyssey of Emotions all too well from her own story:
“When our son Max first came into the world in 1995, he was born prematurely due to gestosis, and after many long weeks of being confined to bed, and a great deal of pain, he was delivered by emergency Caesarean. It was just the beginning: we would then spend countless hours and days anxiously waiting in the hospital. At the same time, however, we also had the experience of meeting caring doctors and nurses, a network of contact persons, and even a sense of security. The really big challenge for us came afterwards: at home.”
Inka Orth is one of these rare cases. In the years following the birth of her son, she had various consultations with Prof. Dr. Dr. Peter Bartmann at the University Children's Hospital in Bonn. Going to check-ups with him was very important to her, because in him she had found a professional contact who was familiar with the specific deficits affecting premature babies, and who could give her the all-important advice she needed in relation to treatment. He provided the crucial clue to answer the question of why there was no real support for parents at the hospital after they are discharged:
“During exactly that period, 2000-2003, a study was being carried out at the hospital with the aim of determining whether aftercare brings significant benefits, and how it can be anchored in the social security code as a legal requirement. Prof. Bartmann then encouraged me to establish an association which would provide for aftercare at the hospital in Bonn.”
In January 2003, Orth and 23 other members founded the association “Bunter Kreis Bonn-Ahr-Rhein-Sieg e.V.”, the forerunner to “Bunter Kreis Rheinland” which would come later. And they started from scratch, with no budget, and no office space: the first information flyer was even put together in the kitchen of one the team members, a paediatric nurse.
“I saw my role in the organisation as mainly being to raise money, and to find sponsors. I was also very aware that we had to get ourselves plenty of exposure to the public. And I knew that wasn’t just about setting up an information stand, but rather by doing something active, something that would encourage people to participate and which, at the same time, would motivate the public to do something for the common good themselves.”
Inka Orth was able to draw on experience from her professional background in the business world: At the young age of 20, she was already working as part of a field service team for her mother.
She learned early on how to communicate with customers on an equal footing, and picked up on what works in marketing, and how to inspire people. It was these skills that she was able to sharpen to perfection in her new voluntary role at the Bunter Kreis Rheinland in the 2000s. Today, Inka Orth mainly has responsibility for public relations and looking for new sponsors.
Active on many different levels
The Bunte Kreis Rheinland and its 62 employees across seven locations (Leverkusen, Cologne, St. Augustin, 2 x Bonn, Bad Neuenahr, Koblenz) support and reach out to affected families, from their in-patient admissions right up to everyday life at home.
“We provide holistic help and support so that children and their families can succeed in life in spite of their difficult situation. To achieve this, we draw on a broad network of regional service providers and auxiliary facilities. Paediatric nurses, social workers, psychologists and doctors are all part of the teams working in our aftercare service.”
Orth highlights the importance of trust in the cooperation with families, as well as the need for a respectful and honest approach with one another, which protects the dignity of the child and the family: after all, you will be meeting families here who have often been brutally catapulted out of their “normality”.
- In 2019, around 600 chronically and seriously-ill children, their families and siblings, were looked after by the Bunte Kreis Rheinland across their seven locations.
- 45 paediatric nurses, more than six social workers, and four psychologists all work to care for these families.
- Clients at the Bunte Kreis are “children and adolescents with cancer, or chronic/sudden and serious illnesses” as well as premature babies and their families.
- The Bunte Kreis collaborates very closely with the University Children's Hospital in Cologne, the Leverkusen Hospital, the Asklepios Children's Hospital in St. Augustin, the University Children's Hospital, the Marienhospital in Bonn, and the Kemperhof in Koblenz.
In addition to its core tasks, the Bunte Kreis is also an active participant in many other projects. For example, it offers activities for siblings, focusing on their health and wellbeing, a counselling centre, and even holiday camps for families with disabled children and teenagers. More recently, a public information campaign was created to promote UN children's rights, especially in terms of health and participation, with the aim of raising awareness. And each year they organise events, such as the flashlight concerts in Koblenz and Bonn, which bring in donations to fund the work and various different projects run by the association.
It’s all about the money, money, money…
Fundraising has always been, and still is, a strong pillar of the association. Orth made the first ‘professionalisation’ of the Bunte Kreis possible in 2005/6, when it received start-up funding from the “Aktion Mensch” organisation. It finally became possible to hire employees to expand the work of the organisation even further: There was now a managing director, who also worked as a social worker, and paediatric nurses to ensure continuous care.
Since 2014 (only), Section 43 of the German Social Code V has been legally clarified to state that chronically ill or seriously ill children and adolescents up to the age of 14 or, in particularly serious cases, up to 18 years of age, must receive socio-medical follow-up care. This also meant that the work of the Bunte Kreis could now be funded by the health insurance companies, but:
“Coverage is not at 100%, and overhead costs in particular are not covered. We always have to go back to the health insurance companies to negotiate.”
Other projects, such as those offered for siblings or families, are also entirely dependent on donations.
“Finding sponsors and looking after our donors is a vital task. Corporate sponsorship is often limited to a certain time period. We are forced to keep our finger on the pulse, to be creative, to develop new things, and to fight for our cause”,
says Inka Orth.
Fight. Organise. Change.
Fighting on: Inka Orth's calling in life?
“My experiences have made me strong, and so I live for my voluntary work. Today I can look back and say that what happened to us back then with Max was a good thing. It has meant our lives have taken a completely different path. If things hadn’t happened that way, we would not have founded the association, we wouldn’t have known what we could achieve, and we would never have met all these great people. The job comes with a lot of responsibility, and it's a lot of time that we all have to invest, but great things are happening and when you meet with the families, you know why you're doing it all. The secret of happiness is not in having it all, but rather in giving.”
And for Inka Orth, being happy also means developing and growing:
“We always had to drive to grow the organisation. Six of our locations are now close to paediatric clinics, and it was not easy to make it clear to the clinics that they can benefit by having us working practically in-house alongside them. There is too little out-patient nursing for children, and as a result, children cannot be sent home. As such, we are working especially hard in the periphery, e.g. Eifel, in Hunsrück or Westerwald, to expand our activities to compensate for this.”
Discipline, a proactive attitude, the will to organise and elicit change: these are the characteristics that make Inka Orth stand out, and the very same qualities are responsible, in part at least, for the success of the Bunte Kreis.
“You are nothing without a good team. I have very good employees by my side, so the load can be spread over several shoulders. I am very grateful to these people, and to my husband especially. In addition to his full-time job, he is involved with us, negotiates with the health insurance companies, and shares my commitment to the cause.”
Inka Orth wouldn't be Inka Orth if there were no more plans on the horizon. The “Bunte Haus” is one such future project. A house which is hoped to provide a large family café, a counselling centre, therapy rooms, relaxation spaces for parents, and much, much more. They have been looking for a suitable property in Bonn since 2013.
“I am confident that we can find something and then finally get started. My persistence has helped me with so many things, and it will work here too, I’m sure."
Without a doubt!