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Petri Lampinen shares his experiences of dementia diagnosis and treatment, hoping to encourage change where needed

Friday 07 June 2019

The two years before my diagnosis were challenging for me and my loved ones. I was examined by a number of doctors with various specialisms and took part in different studies. During that time, I noticed that patient data was not always well transmitted between different treatment units and after my diagnosis, I decided I wanted to share these experiences. I got the opportunity to do so when I received an invitation to a panel discussion at the University of Tampere (Finland), organised by the Finnish Social and Health Informatics Association (FinnSHIA). The focus was on how to ensure better data management in the upcoming social welfare and health care reform.

They wanted to hear about my experiences of cooperating with doctors, nurses, physiotherapists, occupational therapists and social workers. I had a lot to tell them. I told them how the appointments themselves worked very well for me, as they were nearly always on time, but that the administration around them was quite challenging. I had about a hundred medical appointments, during that period, in many different treatment units. This meant sending applications off to many different places in order to get support, both for myself and for my family. Getting decisions on support was often slow, apparently due to an overload of work for the staff involved.

I also noticed how rushed things often were, at the different outpatient clinics I attended. I told the panel at the panel event in Tampere that I noticed doctors often read my patient information for the first time, when I was already sitting in their office. Appointments were often short, too, so doctors didn’t have time to get a proper update. When information came from many different treatment units, I found I sometimes had to instruct the doctor to get my patient information. I decided I would always bring my own patient files with me, which was often useful for the doctors.

Overall, the biggest problem was that the information did not pass between different units properly. The worst example of this, for me, was when I was completely excluded from medical examinations. Two different units decided, at the same time, that I did not belong to their clientele, at which time I was left adrift, with no care. Luckily, I got help and was able to return to treatment. After speaking at the panel event in Tampere, I realised how important it was to continue to share my experiences. I hope that, by doing so, I can help to change some of the practices that are not working. We have discussed some of these same issues with the European Working Group of People with Dementia (EWGPWD). In many European countries, we face the same problems. We, people with dementia, can contribute to changing things. That is patient involvement at its best.