Tale Joan & Anett dansk/engelsk


Velkommen til stofskiftedemonstrationen 2017.

Mit navn er Anett og jeg er stifter af Facebookgruppen Stofskiftesupport hvor vi i dag er mere end 16.000 medlemmer – sammen med min bestyrelse er jeg også stifter af vores frivillige forening ved navn Foreningen StofskifteSupport.

Formålet med vores gruppe og forening er at kæmpe for hurtigere diagnosticering, bedre behandling og ikke mindst flere behandlingsmuligheder for ALLE stofskiftepatienter, uanset hvilken stofskiftelidelse og hvilken medicinsk behandling, de fungerer bedst med.

Det er rigtig svært at stå her i dag og være oprigtigt optimistisk for fremtiden. Vi har i de seneste måneder oplevet mere pres end i alle de år, vi har været i gang med at kæmpe for bedre diagnosticering og behandling af vores, for de flestes vedkommende, kroniske stofskiftelidelser.

Der gøres tiltag i sygehusvæsnet hos speciallægerne – animalsk udvundet stofskiftemedicin Thyroid udskrives ikke længere af endokrinologer riget over, og de patienter, som alligevel ad anden vej vælger at få medicinen, nægtes hjælp af samme speciallæger.

Endokrinologen erklærer patienten velfungerende, uden hensyntagen til patientens symptomatiske tilstand. På hospitalerne rundt omkring i landet, bliver patienten holdt som gidsel i tvungen medicinering, hvis ikke patienten retter ind, er det ud af butikken.

Og her står vi.trykkede og klemte og endnu mere sårbare end vi var før.

Men vi står her også undrende. Vi undres over, at vi ikke kan få ordentlige svar. Vi undres over, at de svar vi får, ikke giver nogen mening.

Vi får at vide, at speciallægerne følger nationale behandlingsvejledninger. Men vejledningerne siger klokkeklart, at der kan og bør gives anden behandling end syntetisk T4 behandling, hvis patienten har vedvarende symptomer ved den syntetiske behandling.

Der står endda i nationale vejledninger, at lægen skal samarbejde med patienten.

Samarbejde-  Åh, hvor ville vi gerne, netop det.

Vores allerstørste ønske! Samarbejde. Dialog. Som et demokratisk samfund med vidende og ansvarsfulde borgere ønsker vi dialogen, samarbejdet. Vil sundhedssystemet være en del af demokratiet, eller står vi overfor et ægte diktatur?

Vi kæmper ikke IMOD den kurante behandlingsvejledning. Faktisk kæmper vi FOR. Vi kæmper for, at behandlingsvejledningen bliver fulgt – og udvidet, ja tak, meget gerne! Hvis, behandlingsvejledningen var blevet fulgt fra starten, var mange af os slet ikke blevet så syge, at vi var endt i en situation, hvor behandlingsvejledningen blev en begrænsning for os.

Vi står overfor et skisma, altså en splittelse mellem lægen og patienten

Lægen på den ene side anerkender ikke vores subjektive oplevelse af symptomer, og vi, patienterne, anerkender ikke, at tallene på computerskærmen fortæller hele sandheden om vores tilstand.

Men hvordan vurderes effekten af en behandling egentligt bedst? Sådan generelt? Hvordan ved en læge, at den medicin, lægen udskriver til patienter, har den ønskede effekt?

Hvordan måler lægen effekten af antidepressiver? P-piller? Viagra? Statiner? Smertestillende? Hvordan gøres en effektiv medicinering egentlig op?

Når lægen er blevet undervist i, at et tal kan vurdere effekten af behandling for stofskiftet – at ét eneste tal faktisk er nok – så har vi, som patienter, et gigantisk arbejde i, at overbevise samme læge om, at det ikke er sådan, det er.

Er det rimeligt, at VI skal overbevise lægen om, at det er os der mærker vores egen krop og bedst ved, hvordan vi har det? At vi i hvert fald ved det bedre, end et tal på en skærm? Er det rimeligt, at lægen tilsidesætter sin egen kliniske vurdering, stopper vat i ørerne og alene kigger på tallet på skærmen, når lægen skal beslutte om vi er ”velbehandlede”?

Nej, siger lægens arbejdsgiver. Kategorisk nej. Det er ikke nok. Lægens arbejdsgiver, sundhedsstyrelsen/lægemiddelstyrelsen, siger, at der skal en lægelig vurdering (ikke bare en robot) ind over. Sundhedsstyrelsen siger endda, at ved vurdering og beslutning om behandling skal patienten inddrages.

Sundhedsstyrelsen er lægens chef. Men hvor er chefen, når vi, kunderne, igen og igen fortæller chefen, at medarbejderne skulker?

Hvor er sundhedsstyrelsen, når vi fortæller dem, at vi er gået i en anden butik, fordi betjeningen var dårlig – eller ligefrem sundhedsskadelig?

Hvor er chefen, når de ansatte ikke tager ansvar for kundeflugten?
Når de ansatte skyder skylden på kunderne?

Lægerne følger ikke behandlingsvejledningerne. Vi ved det. Men ved lægerne det? Eller, er det på tide at vi, kunderne, og chefen – altså sundhedsstyrelsen og i sidste ende sundhedsministeren – gør lægerne opmærksom på at de helt grundlæggende og basale vejledninger vedrørende vores behandling slet ikke følges, og at dette har virkelig – altså VIRKELIG – alvorlige konsekvenser for vores helbred?

Et Citat: Laszlo Hegedüs, professor på Syddansk Universitet og overlæge på Endokrinologisk Afdeling, Odense Universitetshospital.” siger:

”- Der har været en tendens til, at højt og lavt stofskifte blev betragtet som banalt og let at behandle, men vores undersøgelser viser, at det er tilstande, som trods behandling har langtidskonsekvenser for helbredet.

I ved godt, at de strammer grebet, fordi I er blevet klogere – fordi I stiller krav. Så, selvom vi har svært ved at finde optimismen her, stillet foran det officielle Endokrinologiske Bjerg af modstand, så ved vi, at I – og vi – gør en forskel blot ved at stå her i dag. Bare det, at I har valgt at blive klogere, ønsket ansvar og dialog for jer selv – bare det, har gjort en kæmpe forskel.

Vi er ikke slået. Vi VIL insistere på, at de behandlingsvejledninger, der er lavet af chefen, omsider og faktisk bliver brugt af de ansatte – af lægerne – de almene og speciallægerne.

Når vi når dette mål, så vil et tydeligt billede vise sig:

Mangelfuld behandling har tvunget patienter til at klare sig uden støtte fra det sundhedssystem, vi alle betaler til. Det er ikke vores hysteri eller vores mistro, der har skabt vores situation – det er svigt i helt basale lægefaglige færdigheder.

Det er der, det begynder. Og det er der, der må tages fat!

Joan, administrator i vores gruppe stofskiftesupport og næstformand i vores forening, vil nu holde vores tale på engelsk

Tusind Tak fordi I mødte op


Welcome to World Thyreoid Day Demonstration 2017

My name is Joan Lowe, and I’m the vice chair of StofskifteSupport and co-admin of the Facebookgroup with more than 16.000 members.

Our aim is to ensure faster diagnosis, better treatment, and more treatment options for ALL thyroid patients regardless of which thyroid condition and which treatment works best for them.

____

It’s really hard to remain optimistic for the future here today. Over the last few months, we have found ourselves under more pressure than all the years we have been working to better treatment for thyroid patients.

Actions are taken within the health system which are directly at odds with our goal to secure faster diagnosis, better treatment, and more treatment options.  NDT is no longer prescribed by endocrinologist and moreover, patients using NDT are refused specialist help by the endocrinologists.

Endocrinologists are declaring patients well treated regardless of symptoms. We are taken hostage within a system that is forcing us to use the medicine preferred by them. If we do not comply, we are no longer welcome.

And here we stand – overwhelmed and under pressure and even more vulnerable.

But we stand here also wondering. We’re wondering why we cannot get answers. And we wonder why the answers we do get are nonsensical.

Again and again, we are told that the specialists and GPs are merely following the national guidelines for treatment of thyroid patients. But these guidelines state quite clearly that other treatment options must be considered if the patient is not relieved of his or her symptoms with conventional treatment.

National guidelines even state that the doctor must work together with the patient to find the best option for the patient.

Work together… oh, how we would love to work together!

Our biggest wish – working together, dialogue. As a democratic society with responsible citizens, we want the dialogue; we want to work together with the doctors. Are the health authorities genuinely interested in being part of our democracy or are we looking at a dictatorship?

We are not fighting AGAINST the current guidelines. We are in fact fighting FOR! We are fighting FOR at the very least ensuring the doctors follow these basic treatment guidelines. Do we want the guidelines expanded to include more blood testing and further treatment options – of course. But we recognize that as it stands, many patients would never end up as sick as they do if the basic guidelines had been followed in the first instance! Had the guidelines been following, many of us would’ve never sought alternative treatment options, private doctors. Our group would not have been 16.000 members, if the guidelines were followed.
We are facing a schism.

On the one hand, doctors do not acknowledge our subjective symptoms. Patients on the other hand, refuse to acknowledge that the numbers on the computer screen can tell the whole truth about our treatment and how we feel. 

But how is the effect of a treatment really evaluated? Generally? How does a doctor decide if a treatment, medicine, has the desired effect?

How does the doctor decide if the antidepressants are working? The contraceptive pills? The Viagra? Statins? Pain killers? How is the effectiveness of a treatment measured? What counts? What doesn’t count?

When a doctor has learned that numbers on a screen alone are enough to determine whether or not a thyroid patient is optimally treated, we – as patients – have an almost impossible task in front of us if we do not indeed feel as well as the numbers on the screens.

Is it fair that we as patients are left with the burden of evidence? Is it fair that we, who are the sole inhabitants of our body and the only ones actually able to truly feel the effect of the medicines, are regarded as insignificant with regards to determining the best treatment for us? It is fair that the doctor ignores all clinical examinations and relies solely on the numbers on the screen?

No, it is not fair, says the employer. Categorically no. Numbers on a screen are not enough. The patient cannot be a subordinate clause when deciding which treatment to offer and whether the treatment is effective. The health authorities clearly state this. They emphasize in a direct letter to the doctors of Denmark that a clinical examination and patient symptoms should be included when assessing which treatment to offer and the effectiveness of the treatment.

The doctors are employed by the health authorities. But where is the boss when patients – the costumers – repeatedly complain about slacking employees?

Where are the health authorities when we inform them that we have taken our business elsewhere because the service was substandard or even detrimental to our health. Even if we still have to pay for the service that we do not use.

Where is the boss when employees take no responsibility for the lack of customer satisfaction?

The doctors do not follow the direct treatment guidelines. We know it. But do the doctors know? Or is it about time that we – the costumers and the boss (the health authorities, so really, the minister of health) have another go at informing the doctors that they are failing at their job and that their failures have dire consequences for our health?

Quote:

“There has been a tendency to regard thyroid disease as banale and easily treated. However, our research show that, despite treatment, thyroid disease has long term consequences for the overall health and wellbeing of the patients, says Laszlo Hegedüs,” professor of endocrinology at Odense University Hospital.

You all know they are tightening the grip because we are getting wiser and are making demands.  So, although we stand here today facing the massive mountain of official endocrinological resistance, we know that we are making a difference. And you are making a difference just by standing here today! The fact that you have chosen to learn more about your condition, take responsibility for your treatment makes a difference.

We are not beaten. We will continue to insist that the treatment guidelines made by the bosses are followed by the employees.

When we reach this goal, a picture will surely emerge:

Lack of proper care is forcing patients to get by without help from the health system we all contribute to through our taxes. 

We are not crazy bitches, and our distrust did not create this situation. We lost our trust because we were not offered basic medical care and suffered because of it.

This is where it starts. And this is where the job must be done!

Thank you for coming. Enjoy the rest of our day together.

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