Jag hade nöjet att få vara med och diskutera Patientmakt under ett seminarium med presentationer och paneldiskussion i Almedalen arrangerat av Vinnvård. Vinnvård är en forskningsstiftelse som stöder forskning som försöker besvara frågan “Hur kan vi leverera högkvalitativ vård och omsorg vid varje tillfälle, i alla situationer och på effektivaste sätt?”

Johan Assarsson presenterade det pågående arbetet med Patientmaktsutredningen, som han ansvarar för, se film här.

Martin Rejler presenterade sitt arbete och forskning kring att stärka patienternas inflytande genom att förändra ronden, se film här.

Jag fick möjlighet att presentera mina erfarenheter och tankar kring patientmakt, se film nedan.

Därefter följde paneldiskussion där även Vinnvårds programchef Staffan Arvidsson samt politikerna Helene Öberg (mp) och Stig Nyman (kd) deltog, se filmer nedan (diskussionen börjar ca 9:30 in i film nr 1 och fortsätter i film 2).

The first week of July every year is a very special week on the magical island of Gotland, off the east coast of Sweden. This is the week when the already extremely popular capital of the island, Visby, becomes even more over-crowded, when a very large number of politicians, policymakers, lobbyists, journalists and even one or two ordinary people gather here for the annual “Almedalen week” (Elm Valley) http://en.wikipedia.org/wiki/Almedalen_Week.

I have been invited here to speak at a few different events in my capacity of being an informed (and opinionated?) patient, and look forward to engaging in discussions on “How patient-centered is Swedish healthcare in an international perspective?”, “Does increased patient empowerment lead to better healthcare at lower cost?” and other similar questions.

I had a comment from a friend, making me contemplate my role as a “patient”…
Am I OK with being labelled “patient”?
Do I see myself as a “patient”?

Hmmmm…..

My conclusion is that I am perfectly fine with being seen as a “patient” in certain contexts, as long as I am not seen as “nothing but a patient” or even worse “only a patient”. I can accept that in a healthcare context, I am automatically given the label “patient”, in the same way as I am automatically labelled “Frida’s mother” among my daughter’s friends. In fact, let me share a secret: in healthcare, I label myself “patient” to make the healthcare professionals feel comfortable.

But no matter what, I will always be more impatient than patient!

This poster was presented at the 10th anniversary conference of Medical Management Center at Karolinska Institutet 29th and 30th of May 2012.

On the 30th of May, my main PhD supervisor, professor Staffan Lindblad and I gave a joint presentation at the 10 year anniversary conference of Medical Management Center at Karolinska Institutet, Stockholm, Sweden. The title was “From Ideas to Health” and the presentation can be seen below (part 1 is first Staffan and then me, in part 2 Staffan continues). The slides from my part of the presentation can be seen separately below the first film.

When I was diagnosed with Parkinson’s at the age of 32, I was of course devastated. I had a nine-months-old baby at home and they tell me I have an incurable, neurodegenerative disease…?

I felt like I was inside a black hole and thought I would never smile again. However, with a baby in the house, the smiles came back and I started to live again. Slowly but steadily, I was able to understand more about this strange disease and even more importantly, I was able to understand the features of my own particular flavour of Parkinson’s.
Because, as we all know, Parkinson’s is highly individual in nature and my specific combination of symptoms are probably more or less unique to me.

What I found was that by more consciously observing myself and my symptoms and especially the effects my medication had on me, the more I learned about the variations and patterns of my disease. And the more I knew about the variations and patterns of my disease, the more I could understand what made the symptoms worse, what made them less troublesome and how to get through difficult periods when nothing seemed to work.

Almost 10 years have passed since my diagnosis and every day holds challenges due to the disease (and of course also challenges completely unrelated to the disease). Nevertheless, I truly believe that I am in better shape than I have ever been, both physically and psychologically. And maybe it is all self-deception, but who cares as long as it works . I make an effort to see good things in what I experience every day and I am very happy to be able to do all the things I do and all the fantastic people I meet. Of course, not every day is great and of course there are people I wish I had the time to meet more often than I do, but that is no different from most everybody else.

The more I learn and acknowledge my own personal challenges, the more I can take them into account when doing my best to navigate the interesting ocean of life.

As a person living with a chronic disease, I am very grateful to healthcare. I would not be able to live my life like I want to and like I do, if it wasn’t for healthcare. I am completely dependent of my medications, in fact if it wasn’t for my white, red and pink pills, I wouldn’t be able to move around… at all… Without my rigid medication regimen, (6 different prescription drugs, 6 times a day, in 6 different combinations and with 6 different time intervals…), I would most likely be bedridden and very probably catch some unpleasant problem that comes with a sedentary lifestyle, like thrombosis or pneumonia.

I am lucky enough to have found a neurologist who both believes in and practices Shared Decision Making and this has probably accelerated my path towards becoming an extremely active patient. And for me, to participate as much as possible in decisions about my health, makes me feel more in control, even on bad days, because most of the time I know why I am having a bad day (lack of sleep, too much stress, not enough exercise, take your pick…). And to me this is the outcome of good healthcare, and I also want to claim that this outcome is equal with health.

To me health is an individual state of mind where I most of the time successfully put myself and my current situation into a context of wellbeing.

… and how can you measure that…?