Joprojām vienīgais, ko Laimas slimības skartie var darīt, ir būt informētiem un izglītotiem par Laimas slimību
Pēc pacientu organizāciju pārstāvju tikšanās Veselības ministrijā 24.oktobrī, Laimas slimības slimnieku biedrības pārstāvji bija optimistiski noskaņoti saistībā ar iespējamiem uzlabojumiem Laimas slimības diagnostikas un ārstēšanas aspektā. Tikšanās laikā vairākkārt tika uzsvērts, ka Veselības ministrija grib sadarboties ar pacientu organizācijām, lai uzlabotu pacientu pieredzi. Nedaudz vairāk nekā pēc mēneša esam atgriezušies realitātē un saprotam, ka joprojām vienīgais, ko Laimas slimības skartie var darīt, ir būt informētiem un izglītotiem par Laimas slimību, lai palīdzētu paši sev.
2023.gada 8.novembrī Laimas slimības slimnieku biedrība nosūtīja vēstuli Veselības ministrijai, kurā sniedza priekšlikumus diagnostikas, ārstēšanas un profilakses uzlabošanai, kā arī lūdza tikšanos klātienē ar atbildīgo jomu ārstiem, lai izstāstītu par to Laimas slimības skarto, kuru diagnosticēšana un ārstēšana „neierakstās” izstrādātājās Laimas slimības diagnostikas un ārstēšanas rekomendācijās, pieredzi un sniegtu priekšstatu par reāliem klīniskiem gadījumiem saistībā ar novēloti diagnosticētu un neefektīvi ārstētu Laimas slimību. Biedrības vēstule lasāma šajā saitē (7. punkts): https://www.laimasslimiba.lv/aktivitates/sarakste-ar-valsts-institucijam/
2023.gada 4.decembrī no Veselības ministrijas saņēmām atbildes vēstuli, kurā atbilde ir pamatota Latvijas infektologu un hepatologu asociācijas (turpmāk – LIHA) un Latvijas infektologu, hepatologu un HIV/AIDS speciālistu asociācijas (turpmāk – LIHHASA) viedoklī. Proti, atbilde ir pamatota to asociāciju viedoklī, kuras 2019.gadā Laimas slimības slimnieku biedrības aicinājumam tikties ar Laimas slimības skartajiem, lai uzklausītu viņu pieredzi, attiecās. Veselības ministrijas atbildē teikts: „Ministrija novērtē LIHA un LIHHASA sniegto pārliecību attiecībā uz jau pastāvošajām vadlīnijām, proti, Latvijas infektologu 2020.gadā izstrādātajām vadlīnijām “Laimboreliozes diagnostikas un ārstēšanas klīniskās rekomendācijas pieaugušajiem”. Saskaņā ar LIHA un LIHHASA viedokli, šīs vadlīnijas nav zaudējušas savu aktualitāti un ietver visu nepieciešamo informāciju saistībā ar Laimboreliozi.” Diemžēl reālā pacientu pieredze, par kuru aprakstījām vēstulē, nav ņemta vērā. Viss atbildes vēstules teksts skatāma šajā saitē (8.punkts): https://www.laimasslimiba.lv/aktivitates/sarakste-ar-valsts-institucijam/
Atbildi uz rosinājumu organizēt tikšanos ar atbildīgajiem nozares ārstiem, lai uzklausītu Laimas slimības skarto pieredzi, nesaņēmām vispār. Tas liek domāt, ka 24.oktobra paustais: sadarbība ar pacientu organizācijām ir svarīga, uz Laimas slimības slimnieku biedrību neattiecas. Ceram, ka kļūdāmies!
Mēs, protams, esam pateicīgi Veselības ministrijai par sniegto atbildi un gatavību atjaunināt publiski pieejamo informāciju attiecībā uz ērču pārnēsātajām infekcijām un izteikto pateicību Laimas slimības slimnieku biedrībai. Citējot vēstulē rakstīto: „Ministrija vēlas pateikties un atzinīgi novērtē Biedrības vēlmi un aktīvo iesaisti veselības aprūpes uzlabošanā, un cer uz turpmāku sadarbību Laimboreliozes pacientu labklājības celšanā Latvijā.” Mēs gan uzskatām, ka varam runāt nevis par turpmāku sadarbību, jo līdz šim tādas diemžēl nav bijis, bet ceram, ka reiz tomēr Veselības ministrija un atbildīgās asociācijas un speciālisti uzsāks sadarbību ar Laimas slimības slimnieku biedrību, lai uzlabotu to Laimas slimības skarto pieredzi, kuriem neizdodas uzlabot veselības stāvokli atbilstoši valstī noteiktajām rekomentācijām, tādējādi šie cilvēki gadiem ilgi cieš, zaudē darba spējas un dzīves kvalitāti.
Lai vai kā, mēs turpināsim savu darbu: izglītot un informēt, un veicināt profilaksi!
#Laimasslimība #esigudrāksparērcēm
36 komentāri - Joprojām vienīgais, ko Laimas slimības skartie var darīt, ir būt informētiem un izglītotiem par Laimas slimību
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