An interview with Claudia Nemeth – children’s palliative care lead in Austria

Categories: Leadership.

Can you give us some insight into your professional background?
I was employed for more than 20 years in the national health care planning institute ÖBIG which is a business unit of the Austrian Health Institute “Gesundheit Österreich GmbH”. ÖBIG carries out research and planning activities and is in charge of reporting to the Ministry of Health. It also provides a basis for the control and monitoring of the Austrian health care system. I first came into contact with the field of hospice and palliative care in 1999  and it became one of the focus areas of my work at ÖBIG. Since that time my project team and experts from the field worked to produce recommendations and develop several concepts and standards for hospice and palliative care in Austria. An example of this is a quality manual for hospice and palliative care services in Austria, which was published in 2013.

What drew you to work in the field of children’s palliative care?
In cooperation with Hospice Austria (the national umbrella organisation for 290 hospice and palliative care institutions in Austria) and palliative care experts we developed the concept of a graded hospice and palliative care system for Austria. This concept, consisting of six inpatient and outpatient services, was integrated into the National Health Care Plan in 2010. In 2012 we developed the concept of hospice and palliative care services for children and young adults. During this work, Hospice Austria became an important partner to the Austrian Health Institute and to me. I developed a deep appreciation for the work they do, the way they do it and what they stand for.

Hospice Austria advocates the nationwide implementation of hospice and palliative care, including children’s palliative care. Children’s palliative care is a field that still needs very much development and support in Austria. At the beginning of 2014 Hospice Austria established a new competence centre for hospice and palliative care for children and young people. I was asked whether I would like to join the team and take over leadership of the field of children’s palliative care. I readily agreed.

In my new position at Hospice Austria I am now very close to the implementation and to the services of CPC. Hospice Austria has formally nominated two representatives for children’s palliative care: Martina Kronberger-Vollnhofer (paediatric physician) and Ulrike Pribil (paediatric nurse). These two women are supporting me in my work.

What is your previous experience in the field?
I started to work at Hospice Austria and thus directly in the field of children’s palliative care in March 2014. Before that, I worked for 21 years in Health Care Planning. In 2012 the Ministry of Health financed the development of a concept for paediatric hospice and palliative care in Austria. The Austrian Health Institute, in coordination with Hospice Austria, established a task force of experts from the field of children’s palliative care to develop the concept and defined four different inpatient and outpatient services for children’s palliative care. This concept was published in July 2013 and is available on the website of the Ministry of Health. Developing the concept brought with it a deep insight into all aspects of children’s palliative care and I became part of the network of those involved in direct care.

Can you describe the present status of children’s palliative care in Austria?
Children’s palliative care is not yet integrated in the Austrian health care system. The first services for children have already been established in some regions of Austria in the form of mobile volunteer hospice teams, home palliative care support teams and paediatric palliative beds in hospitals. No inpatient children’s hospices have been established as yet. More services for children are being planned, according to the recommendations found in the Austrian concept for children’s palliative care.

What training is available to professionals and allied health workers in your country?
An advanced multi-professional training for children’s palliative care (160 hours) is offered at level 2 of the Palliative Care Master programme. This course is hosted by Paracelsus Medical University, Hospice Austria, St. Virgil, Landesklinikum Baden-Mödling and MOKI.

Hospice Austria developed an Austrian-wide curriculum for training volunteers in children’s palliative care which was published in 2013. The Curriculum consists of 80 hours theory and 40 hours practice and is for hospice volunteers who have already completed the basic course.

How easy is it for the children who need palliative care to access these services in Austria?
In principle there are no barriers for children and their families accessing services in regions where services are already established and the services are generally provided free of charge. However, there is still a lack of services and many families have no specialised support at all. Children with cancer are generally well catered for.

In 2013 the main stakeholders of the Austrian health care system accepted the concept for children’s palliative care and two federal states are already systematically implementing these services. Hospice Austria advocates the nationwide implementation of children’s palliative care and has established a competence centre for this purpose.

What would you describe as your greatest achievement to date?
Our greatest achievement is that after a discussion process, the concept for children’s palliative care was accepted by all the crucial stakeholders and could be published.

What would you describe as your biggest challenges?
The greatest need at present is to integrate children’s palliative care into the national health care system and the public finance system. At present the established services are mostly dependent on donations.

What does the future hold for your organisation?
We are fortunate that at the moment there is a great deal of public attention on children’s palliative care and an acknowledgement of its importance. We sincerely hope that the Austrian federal states will implement the concept we developed and that a solution with regard to financing is found. Once this happens we can focus on monitoring the implementation, improving the quality, supporting those in the field and further developing everything regarded as necessary. 

So there is much to do – and I look forward to contributing to it!

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