The PEP consists of Q fever patients, post-COVID patients, patients with complaints after a COVID-19 vaccination and an independent chair. The PEP is tasked with providing solicited and unsolicited advice to the board from the perspective of people affected by Q fever, post-COVID or complaints after vaccination. This can be about existing and new activities and projects, but also about policy. In addition to the PEP, there is a flexible group of experienced experts who play a role in various activities; from intakes to training courses and projects.
The PEP has 7 members:
Christine van Waveren, post-COVID patient
Support for patients with problems after Q fever, a COVID infection or vaccination remains important. There is (still) no curative treatment or well-structured support available in the regular healthcare field. This means that an organization such as Q/C-Support is indispensable.
I am happy to use my knowledge of communication, policy development, stakeholder engagement and experience of living with post-COVID to help the organization support patients and continue to draw attention to these patient groups.
Dave Jonkers, post-COVID patient
'The main reason that I participate in the PEP as a post-COVID patient is to contribute to preparations for a possible new post-infectious condition in the future. In this way, the associated patients can be supported at an early stage in areas such as care, work, income, etc. In addition, I think it is important that attention is and remains for the less digitally skilled and non-Dutch speaking patients. How we can reach them better and include their experiences in the whole.'
Emile Maassen, Q fever patient
'Where initially it seemed to be just a collection of long-term complaints with an effect on health and well-being, the insight is growing that with a post-infectious condition, complications can occur even years later that lead to new complaints or conditions. Support in finding the right care at the right time is therefore important. Q and C support provides this.
However, there are also indirect consequences. Other conditions that come our way can have a considerably less favorable course as a result. Both in terms of treatment options and treatment outcome. I believe that this fact should also be given a place in research, education and future care.'
Gerjan de Vries, complaints after COVID-19 vaccination
'First you don't know what's happening to you, then the GP leaves you out in the cold and sends you into the alternative circuit. And you lose track. Fortunately, I found (re)cognition at C-support. When they were looking for experienced experts with post-vaccination complaints, I was happy to sign up. Perhaps I can add something with my marketing and communication background. I am happy to help people who have become ill due to vaccination and to gain recognition for the existence of the complaint. Vaccinations can have serious side effects'.
Laxmi Mohan, complaints after COVID-19 vaccination
'Complaints after vaccination are topical. By working together, learning and listening, professionals and stakeholders can improve their approach. As a volunteer and fellow sufferer with complaints after corona vaccination, I am proud to be part of the platform team of Q- and C-support. The growing recognition gives hope.
As a fellow sufferer, I am regularly in contact with patients with post-vaccination syndrome. With my experiences with these fellow sufferers, I think I can make a valuable contribution to this team to better anticipate the needs and wishes of patients.'
Mike van den Nieuwenhof, Q fever patient
'We have fought for recognition and acknowledgement for so long. It seems that this is less true for post-COVID. But there is still a need for an organization that offers good aftercare, even in the event of new outbreaks. I am happy to contribute to that.'
Monique Hoogakker, post-COVID patient
'It is very important that the experiences of patients - including mine - are included in all facets of the organization; policy, projects, research, etc. Also with parties outside the organization. Let us learn from the suffering of Q fever patients and build on this. It is thanks to the efforts of Q fever patients that we can now turn to C-support. They pulled the chestnuts out of the fire.'
Yolan Koster – Dreese, chairman
'The PEP offers perspective: the Patients & Experts by Experience Perspective! Based on experiences with Q fever, COVID infections or vaccinations, the PEP Q and C support helps to better connect with how lives have been affected.
With appropriate energy, I will use my experience as a director and as an expert by experience to firmly anchor the position of the PEP. Seasoned in healthcare innovation, the social domain and the labour market, I hope to contribute as chairman to enriching and broadening the use of this philosophy.'
