Sweden is making ready a nationwide technique to enhance healthcare for individuals with a uncommon illness. The long-called-for plan will sort out main care inequalities amongst the estimated half one million individuals in Sweden dwelling with a uncommon illness.
Regardless of the numerous variety of uncommon illness sufferers in Sweden, the nation continues to be missing a nationwide technique. However that’s about to vary. In mid-January this 12 months the Swedish authorities commissioned the Nationwide Board of Well being and Welfare to design a nationwide motion on Uncommon Ailments inside about fourteen months.
“Now we have been combating for a nationwide technique for 25 years. There are enormous inequalities in healthcare for Swedish sufferers with uncommon situations,” stated Maria Westerlund, chairwoman of the Swedish umbrella affected person organisation, Uncommon Ailments Sweden.
Westerlund instructed EURACTIV that Sweden and Malta are the one two EU nations that haven’t but adopted uncommon illness methods. Now, Westerlund hopes the tide is popping, as Sweden’s centre-right authorities is asking for a technique with an express intention to cut back inequalities.
Addressing inequalities
In its mandate to the Nationwide Board of Well being and Welfare, the federal government describes a scenario the place docs’ information of uncommon ailments is fragmented throughout the nation and ready occasions for analysis and remedy fluctuate extensively.
One other drawback is {that a} uncommon illness affected person is commonly referred to completely different specialists for analysis, bouncing round within the healthcare system when on the lookout for assist.
“These sufferers can have an infinite variety of care contacts. So, we see a necessity for them to have equal alternatives for early analysis and to obtain medical recommendation and remedy in a coordinated manner on a well-defined “care chain”,” Lena Lövqvist, programme officer on the Nationwide Board of Well being and Welfare, stated to EURACTIV.
Along with a colleague, she is main the board’s work to develop the Swedish technique.
Sweden lagged behind
Sweden participated in a European challenge to develop nationwide methods for uncommon ailments from 2009 to 2013. However after that, the nation didn’t undertake the draft technique as, for instance, Denmark did in 2014, Lövqvist defined.
With Denmark ten years forward, the Board is wanting on the Danish technique for inspiration. For instance, Denmark has two uncommon illness clinics with coordinating multidisciplinary groups, which Sweden lacks.
“However, even if no Swedish technique was adopted, we should acknowledge that some enhancements have been made anyway,” remarked Lövqvist.
She notes that in 2018, the Swedish authorities invested SKR 12,5 million (€ 1,1 million) to enhance the unfold of data of uncommon ailments, amongst others.
Every of Sweden’s seven college hospitals has additionally established an administrative unit, centres for uncommon ailments, to assist with coordination and information dissemination. However their assets are stated to be uneven, and so they solely present steering and never medical assessments of sufferers.
“What we actually prefer to see is them to be given monetary muscle to help and information main care docs, for instance. As a result of new and essential medical information about uncommon ailments usually doesn’t trickle right down to the final practitioners or household docs,” stated Maria Westerlund.
Entry to orphan medication
Bettering entry to orphan medication can be a vital query for the affected person organisation. Nonetheless, this concern won’t be a part of the technique. As an alternative, it will likely be ready individually inside the Ministry for Social Affairs, in response to the federal government.
The affiliation can be calling for higher use of European skilled teams on uncommon ailments, that are coordinated inside the European Reference Networks (ERNs).
These teams are usually not a proper a part of the Swedish healthcare system. Nonetheless, the Nationwide Board of Well being and Welfare would, in response to Lerna Lövqvist, enhance the information in regards to the ERNs amongst Swedish docs and improve the probabilities of referring sufferers to them.
It is because Sweden alone can not maintain the medical competence for all uncommon ailments, that are estimated between 6,000 and eight,000.
Lena Lövqvist defined: “We have to set up simpler administrative methods to refer a affected person to docs within the ERN teams. Sweden truly participates in all the present 24 teams, that are divided by medical subject.”
She additionally tells EURACTIV that the EU is now investing some huge cash to make ERNs work higher.
Karolinska College Hospital’s instance
EURACTIV additionally spoke to Wiktor Wackerberg, the coordinator on the college Karolinska College Hospital in Solna, close to Stockholm, which has improved the referral pathways by way of the hospital’s participation in 20 ERNs.
“Sufferers with uncommon ailments might be referred to Karolinska College Hospital, who in flip can seek the advice of the ERN to be able to talk about the affected person’s case with different European specialists and colleagues within the particular subject. Thereby, the affected person can profit from the experience of a wider pool of specialists,” he stated.
Inside an ERN in a particular medical space, troublesome instances are being mentioned through a telemedicine system on the European stage, in response to Wiktor Wackerberg.
“Regardless that our monetary assets have been elevated, they don’t cowl all of the work we do when it comes to care, analysis and gathering and disseminating information,“ he commented.
The brand new Swedish technique have to be introduced by the top of March 2025 on the newest.
[By Monica Kleja, edited by Vasiliki Angouridi, Brian Maguire| Euractiv’s Advocacy Lab ]
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