Kwararrun NHS EB kiwon lafiya

Muna aiki tare da haɗin gwiwa tare da NHS da sauran ƙungiyoyi don tabbatar da cewa mutanen da ke da EB a Burtaniya sun sami tallafin kiwon lafiya da jin daɗin da suke buƙata.

A cikin 2008 mun haɗu da NHS don kafa Ƙungiyar Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararrun Ƙwararra kuma a Birtaniya. A yau NHS tana ba da sabis na kiwon lafiya na EB na duniya ta hanyar cibiyoyin kiwon lafiya na EB guda huɗu da sabis na kiwon lafiya na Scotland EB. Kuma a cikin 2017 mun ba da tallafin haɗin gwiwa don Cibiyar Cutar Rare, irin ta farko a Asibitin St. Thomas da ke Landan wanda ke ba da tallafin kiwon lafiya na ƙwararrun ga manya da yara waɗanda ke da cututtukan ƙwayoyin cuta masu wuya, gami da EB.

A cikin tarihin mu muna da kuma ci gaba da saka hannun jari a cikin himma tare da manufar inganta sakamakon haƙuri ga mutanen da ke zaune tare da EB. Daga kafa ƙwararrun sabis na kiwon lafiya da haɓaka wani kwas ɗin ilimin motsa jiki da aka ba da izini ga abokan aikin asibiti da bincike, muna ci gaba da bincika dama da haɗin gwiwar da za su amfanar membobinmu da sauran al'ummar EB a yau da nan gaba.

Yadda muke aiki don haɓaka kiwon lafiya da tallafin jin daɗi ga al'ummar EB

Ga kwararru

• Muna bayar da tallafi don samar da kayan aiki na musamman da cibiyoyin kiwon lafiya na EB ke buƙata, tallafin tallafi na marasa lafiya don taimaka wa membobi kan wasu kuɗaɗen yau da kullun da ke da alaƙa da zaman asibiti, da tallafin membobi don kayan aiki na gaggawa da mahimmanci.

• Muna goyon bayan haɓaka jagororin aikin asibiti (CPGs) waɗanda ke ba da shawarwari kan kula da lafiya na EB bisa ga shaidar da aka samu daga kimiyyar likitanci da ra'ayoyin ƙwararru. Muna kuma ba da nau'ikan marasa lafiya.

• Mun yi haɗin gwiwa tare da NHS Ingila don nazarin bayanan masu haƙuri na EB, kuma za mu yi amfani da sakamakon don samar da cikakkun bayanai da ƙididdiga ga likitoci / GPs, marasa lafiya da masu kula da su, gwamnati, da jama'a, don taimakawa wajen ƙara fahimta da kuma tabbatar da goyon bayan da muke bukata.

Ga mutanen da ke zaune tare da EB

• Ƙungiyar Tallafin Al'umma ta EB tana ba da bayanai, jagora da kuma bayar da shawarwari ga mutanen da ke zaune tare da EB, iyalansu da masu kula da su ta hanyar asibitoci, abubuwan da suka faru, alƙawura ta kan layi, da kuma Litinin zuwa Juma'a daga ƙarfe 9 na safe zuwa 5 na yamma ta layin wayar EB Information and Enquires.

• Muna ba wa membobinmu tallafin lafiyar kwakwalwa na awanni 24 a rana , kuma dangane da takamaiman yanayi, muna ba da shawarwari na musamman kan lafiyar kwakwalwa.

• Muna ba da damar hutu ga membobinmu da iyalansu ta hanyar mu gidajen hutu

• Muna ba wa membobinmu damar yin hulɗa da juna ta hanyar tarurruka daban-daban na kai tsaye da kuma ta yanar gizo

• Muna ba da tallafin baƙin ciki ga membobinmu

Ga dukkan al'ummar EB

• Manajojin Tallafin Al'umma na EB na iya raka, da tallafawa membobinmu da ƙungiyoyin kiwon lafiya na EB a asibitocin yanki da kai tsaye.

• Muna haɗa membobinmu da ƙwararru daga fannoni na Bincike da Lafiya ta hanyar jerin shirye-shiryen yanar gizon mu wanda ke ba da damar koyo game da batutuwa daban-daban na kiwon lafiya da bincike da suka shafi EB, kuma muna samun amsoshin tambayoyi daga ƙwararru.

Shafin da aka buga: Oktoba 2024
Kwanan sake dubawa na ƙarshe: Maris 2025
Kwanan sake dubawa na gaba: Maris 2026