Katswiri wa NHS EB chisamaliro chaumoyo

Timagwira ntchito mogwirizana ndi a NHS ndi mabungwe ena kuti tiwonetsetse kuti anthu omwe ali ndi EB ku UK akupeza chithandizo chamankhwala ndi thanzi lomwe amafunikira.

Mu 2008 tinagwirizana ndi NHS kuti tikhazikitse National Specialized Commissioning Group (NSCG) kuti tiyang'ane kupereka chithandizo chamankhwala chapadera kwa anthu omwe ali ndi mitundu yonse ya EB ku UK. Masiku ano a NHS amapereka chithandizo chamankhwala chapadziko lonse cha EB kudzera m'malo anayi apadera a EB ndi chithandizo chamankhwala cha Scottish EB. Ndipo mu 2017 tinapereka ndalama zothandizira ku Rare Disease Center, malo oyambirira a chipatala cha St. Thomas 'ku London omwe amapereka chithandizo chamankhwala chapadera kwa akuluakulu ndi ana omwe ali ndi matenda osowa majini, kuphatikizapo EB.

M'mbiri yathu yonse tili ndi kupitilizabe kuyika ndalama pazoyeserera ndi cholinga chokweza zotsatira za odwala kwa anthu omwe ali ndi EB. Kuyambira pa kukhazikitsidwa kwa akatswiri odziwa zachipatala komanso kupanga maphunziro ovomerezeka achipatala mpaka akatswiri azachipatala komanso ochita kafukufuku, tikupitilizabe kufufuza zomwe zingatheke ndi mgwirizano womwe ungapindulitse mamembala athu komanso gulu lonse la EB lero komanso mtsogolo.

Momwe timagwirira ntchito kuti tipititse patsogolo chithandizo chamankhwala ndi thanzi ku gulu la EB

Kwa akatswiri

• Timapereka ndalama zothandizira zida zapadera zomwe zikufunika ndi malo osamalira zaumoyo a EB, thandizo la odwala omwe ali m'chipatala kuti athandize mamembala ndi zina zamtengo watsiku ndi tsiku wogonera kuchipatala, ndi thandizo la membala la zida zachangu komanso zofunika

• Timathandizira chitukuko cha malangizo achipatala (CPGs) zomwe zimapereka ndondomeko ya chisamaliro chachipatala cha EB kutengera umboni wopezedwa kuchokera ku sayansi ya zamankhwala ndi maganizo a akatswiri. Timaperekanso mitundu ya odwala

• Tagwirizana ndi NHS England kuti tifufuze deta ya odwala a EB, ndipo tidzagwiritsa ntchito zotsatira kuti tipereke zowona ndi ziwerengero zomveka kwa madokotala / GPs, odwala ndi owasamalira, boma, ndi anthu, kuti athandize kuwonjezera kumvetsetsa ndi kuteteza chithandizo chomwe tikufuna.

Kwa anthu okhala ndi EB

• athu EB Community Support Team imapereka chidziwitso, chitsogozo ndi kulengeza kwa anthu okhala ndi EB, mabanja awo ndi owasamalira kudzera m'zipatala, zochitika, nthawi yokumana ndi anthu pa intaneti, komanso Lolemba mpaka Lachisanu 9am mpaka 5pm kudzera pa foni ya EB Information and Inquires.

• Timapereka mamembala athu 24/7 chithandizo chamankhwala pa intaneti, ndipo kutengera momwe zinthu zilili, timapereka upangiri waukatswiri wamatenda amisala

• Timapereka mwayi wopumula kwa mamembala athu ndi mabanja awo kudzera mwa athu nyumba zatchuthi

• Timathandizira mamembala athu kulumikizana wina ndi mnzake kudzera m'njira zosiyanasiyana zochitika pa-munthu komanso pa intaneti

• Timapereka chithandizo chamankhwala kwa mamembala athu

Kwa gulu lonse la EB

• Oyang'anira athu a EB Community Support Managers amatha kutsagana, ndikuthandizira mamembala athu ndi magulu azachipatala a EB kuzipatala zachigawo ndi zofikira anthu.

• Timalumikiza mamembala athu ndi akatswiri ochokera m'magawo a Kafukufuku ndi Zaumoyo kudzera mu mndandanda wathu wapa webinar kupereka mwayi wophunzira za nkhani zosiyanasiyana zaumoyo ndi kafukufuku zokhudzana ndi EB, ndikukhala ndi mafunso oyankhidwa ndi akatswiri

Tsamba losindikizidwa: Okutobala 2024
Tsiku lomaliza lomaliza: Marichi 2025
Tsiku lobwereza lotsatira: Marichi 2026