Support For Severely Ill Children And Teens
Many people provide care for chronically ill family members in their own homes. For many years now, Bertelsmann has made donations to the outpatient children’s palliative care team “Der Weg nach Hause – Bethel” in Bielefeld to help families with severely ill children and young people from the region receive in-home support. One such family are the Gabriels and their daughter Sandra, who met Bertelsmann CEO Thomas Rabe and company spokeswoman Karin Schlautmann at the Bethel children’s and youth hospice in Bielefeld.
As part of its CSR efforts, Bertelsmann has since 2006 supported the “Der Weg nach Hause – Bethel” (The Way Home) initiative in Bielefeld, which was initially founded as a project in 2004. Every December, Bertelsmann Chairman & CEO Thomas Rabe presents a donation check in the amount of €25,000 to the project at the Gütersloh Corporate Center. The donation helps to provide severely ill children and teens with outpatient treatment and care at home, in familiar surroundings and with their families. To date, Bertelsmann alone has donated a total of €450,000 euros. Thomas Rabe is also personally committed to “Der Weg nach Hause”: He matches Bertelsmann’s donation with his own private funds, and recently visited the children’s and youth hospice in Bielefeld for the second time together with Karin Schlautmann, Head of Bertelsmann Corporate Communications. The hospice works with the outpatient children’s palliative care team and is likewise supported by the von Bodelschwingh Foundation Bethel in Bielefeld. One of the families that the palliative care team helps and that Thomas Rabe and Karin Schlautmann also met in Bethel is the Gabriel family. Natalia Gabriel spoke openly to our journalist about the illness of her now 23-year-old daughter Sandra and how difficult it is to provide proper care – and expressed her gratitude for the help she has received, which is only possible thanks to donations including those from Bertelsmann.
Unique network in Germany
For 15 years, Natalia Gabriel looked after her severely disabled daughter Sandra mostly on her own. From morning to evening and several times during the night. Sandra suffered severe neurological damage at birth due to acute oxygen deprivation, which is why she is permanently dependent on comprehensive care and support. “For a long time, I thought that I wanted to do it all myself, and did,” says the mother of three – her two other daughters are now 34 and 24 years old; their father works full-time. “And somehow we managed. But when Sandra had to go to hospital more and more often, I was advised to call in a care service for support.” For about seven years now, the service has been coming to the Gabriels’ home in Lemgo for eight hours a day – a first big step for her to regain some of her own life.
However, despite the support from the local care service, her personal burden remained high – during the day with basic care, but especially at night and on days when Sandra is doing particularly poorly. “A friend therefore advised me shortly afterwards to contact the SAPV ‘Der Weg nach Hause’ team,” continues Natalia Gabriel. SAPV stands for “Specialized outpatient palliative care for severely ill children and adolescents.” This was the second important step: “The team is available around the clock by phone to provide medical and nursing advice, comes to our home at any time if necessary, and has also helped us comprehensively in many other therapeutic areas.” But that’s not all. The team’s services are provided– and this is unique in Germany – in cooperation with the University Clinic for Child and Adolescent Medicine at the Bethel Children’s Center as well as with the Bethel Children’s and Adolescent Hospice, which opened in spring 2012 as the tenth facility of its kind in Germany, with ten spaces. The team’s doctors, nurses and therapists often work on both an outpatient and inpatient basis. This network was the third step for the Gabriels: “I can stay at the hospice with Sandra for up to four weeks a year, where they already know us from the outpatient care, and recover from all the hardships during this time – it’s very good for me and my husband.”
In the beginning, the “Der Weg nach Hause – Bethel” project, with its approach of enabling children and young people from Germany’s East Westphalia-Lippe region with life-shortening illnesses to spend as much time as possible at home in the last phase of their lives, was still exclusively dependent on donations. This is because health insurance companies were generally not allowed to cover medical or nursing services outside of a doctor’s surgery or hospital at the time – not to mention additional services such as occupational or music therapy for the sick children or psychosocial counseling for parents and care for siblings. Since 2015, at least the medical or nursing treatments have been covered – since then, “Der Weg nach Hause” has been recognized as specialist outpatient palliative care. However, there are still other items that are no less necessary from the palliative care team’s point of view, as Sandra’s case makes clear.
Relief for the family
“For example, we helped to make a special reclining wheelchair for Sandra,” says Stefan Schwalfenberg, head doctor of the children’s palliative care team and senior physician in charge of palliative care at the Bethel Children’s and Youth Hospice and the University Clinic for Children’s and Youth Medicine at the Bethel Children’s Center. “She could no longer sit in a normal wheelchair without pain.” A special stairlift was also installed in the Gabriels’ home – the mother had previously always carried her daughter up the 15 steps to the upper floor and back down again herself. And on the recommendation of the palliative care team, they were given a bathing stretcher to relieve the strain on Natalia Gabriel’s back. “You can only see the need for these and other things that make care easier when you visit people at home,” says the doctor, explaining the basic principle of outpatient counseling and care. In other families, it is the siblings who need psychosocial or therapeutic care. “They often fade into the background in the face of a family member’s serious illness and our work focuses on them as well,” says Stefan Schwalfenberg. Nor are the parents themselves left to fend on their own. “It’s good for them to talk about their situation, to prepare for dying and death, for example. That’s what we’re here for,” emphasizes Schwalfenberg.
This is the first time Natalia Gabriel is accepting the opportunity to take time out with Sandra at Bethel Children’s and Youth Hospice. “I was reluctant to go to a hospice for a long time,” she reports. “Sandra is not terminally ill. But I am so happy that we are very welcome here nevertheless. It’s the best thing that could have happened to us.” René Meistrell, facility manager of the children’s and young people’s hospice and SAPV, explains the rationale behind the facility: “Our guests may have a life-shortening illness, but they are often not yet in their final phase of life. We also take in children and young people with their relatives from our outpatient care whose health situation is currently relatively stable.” Relatives can then retreat to a separate wing of the building for a week or two to be able to switch off even better, while the hospice’s specialist staff look after the person in need of care; a visit is of course possible at any time. Parents or one of the parents can also use this respite for a vacation. Sandra Gabriel, for example, is in her second week at the hospice when the editorial team visits. The week before, her parents went on vacation together for the first time in more than 20 years. “It was still a difficult time for me. I was restless and called every day to ask how Sandra was doing,” admits the mother.
Active on social media
“We will continue to be dependent on donations to a large extent in the future. They currently make up around 30 percent of the annual budget for ‘Der Weg nach Hause’, which supports around 80 families and the Bethel children’s and youth hospice,” estimates Meistrell. This makes him and his fellow team members – around 40 nursing staff, four doctors, therapists, therapeutic and social pedagogical experts, pastoral care workers, bereavement counselors, administrative, kitchen and housekeeping staff – all the more grateful for donations. Like the one made annually by Bertelsmann for the “Der Weg nach Hause” team.
Another very important factor is public relations, to which the Bethel team itself devotes itself in social networks, among other things – supported by the families. Natalia Gabriel also deliberately approaches the public: “It’s so important to know that you can get help and how – and to accept this help. For a long time, I didn’t want to do that,” she says. “That’s why I now talk about us openly and also with the media. I’ve known for a long time that I don’t want to hide myself or Sandra. I can pass on my knowledge and experience to others. And I want people to know that there is help available if they are affected themselves. For me, Bethel Children’s Hospice is the most beautiful place in the world.”
