On March 21st as part my volunteering as a board member of the EFCCA Youth Group I attended a Roundtable discussion on Transition to Adult Care in Brussels, hosted by the European Patient’s Forum’s (EPF) Youth Group.
The aim of the workshop was to gather young patient organisations and relevant stakeholders to help:
- Identify both bad and good practices in national healthcare systems
- Build a thematic network of information and support for young patients
- Raise awareness of the challenges, potential pitfalls, and possible solutions related to adult care transition
Attendees at the Roundtable represented the broad range of stakeholders in the transition process such as Bart Ooijen (Permanent Representative of Netherlands to the European Union), Jamie Wilkinson representing PGEU (Pharmaceutical Group of the European Union) and Anders Olauson (Honorary President of EPF).
The event kicked off with a scene setting role play given by members of the youth group that showed some of the difficulties that have happened to them during transition. Issues touched upon were; loss of patient information, the feeling of being dropped into the alien and hostile environment of adult care, not being listened to and even talked down to from a patronising doctor due to your young age leading to a sudden change of medical treatment. All of which left the patient feeling disempowered, worried, frustrated and with an increased chance of non-adherence to treatment.
Next up and to add to the discussion were four presentations from attendees talking about either their research projects or ones they had come across. What impressed me the most about the projects was that they weren’t just looking at good and bad practices but they were also looking to develop their own tools to improve transition. For example the Milestone Project that Veronique De Roeck presented is looking into whether training mental health doctors about the needs of younger patient’s aids transition. The European Society for Paediatric Oncology are looking into the development of a survivor passport that could be given at the end of treatment detailing what the patient had been given but also what possible side effects they may cause in the future.
The role-play and presentations were all a set piece for the main discussion where all attendees freely spoke of their experiences, views and opinions on the current state of transition in their respective healthcare systems in Europe. Some of the young people’s stories were shocking and moving at how they were left to feel belittled in their own experience of their conditions and not treated with the same care as they were in paediatric care. However it was mentioned by some that it wasn’t just the patients that needed better support and care, parents also needed to be educated on the whole transition process so they can better advocate for their child in the new system or simply learn to let their child take care of their own health. Communication or lack of it between paediatric and adult care was also noted as a common problem with some suggesting that a transition co-ordinator is needed for the more complex patients or that the paediatric doctor and adult care doctor should sit in on each other meetings with the patient at least once.
Looking at more solutions to the problems peer to peer support for parents, patients and even siblings was proposed as well as a patient passport or checklist for transition. Training for adult care doctors was also suggested to make them more aware of the needs of younger patients and the paediatric system they were coming from.
Anders Olauson, made a very pertinent suggestion and request of the young people attending and that was to rebel against the current system but in a positive way and to think outside of the box when coming up with suggestions to improve the current situation as the young patients know what works best for them.
As a member of the EPF Youth Group I was really proud of what we had achieved with the roundtable by getting such a broad range of people in the same room to discuss the topic of transition and look at ways to improve it going forward. To add to the debate I also hosted a successful Twitter chat on the topic a week later using the hashtag #EPFTransition. All of which will add to the report we are creating with recommendations for all stakeholders in the transition process, and help us to take this topic forward by interacting with decision makers to improve the care for young people across Europe. Something we hope to feed into our work on transition at the EFFCA Youth Group.
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The Chronic Adventurer 