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Kwararren EB Kiwon lafiya

Wani mutum-mutumi na Mary Seacole yana tsaye da alfahari a gaban wani babban madauwari na tagulla, wanda aka saita a cikin wani yanki mai shimfidar wuri mai cike da kore.

Muna aiki tare da haɗin gwiwa tare da NHS don isar da ingantaccen sabis na kiwon lafiya na EB wanda ke da mahimmanci ga mutanen da ke zaune tare da EB. Akwai cibiyoyin EB guda huɗu da aka keɓance a kusa da Burtaniya waɗanda ke ba da ƙwararrun EB kiwon lafiya da tallafi, da sauran wuraren asibiti da asibitoci na yau da kullun waɗanda ke nufin samar da sabis na EB ga mutane a duk inda suke. 

Ƙungiyoyin da suka ƙunshi DEBRA EB Masu Gudanar da Tallafin Jama'a, masu ba da shawara, EB jagororin, ma'aikatan jinya da sauran ƙwararrun ƙwararrun ƙwararrun kiwon lafiya suna ba da tsarin kulawa da yawa don kulawa tare da manyan matakan ƙwarewa.

Tallafin ƙwararrun kiwon lafiya

Muna ba da kuɗi wanda ke ba ƙungiyoyin kiwon lafiya ƙwararrun damar ɗaukar ƙarin ayyuka waɗanda ke amfanar mutanen da ke tare da EB, gami da:

  • Gina Jiki - ba da tallafi ga sabis na masu cin abinci na EB, yin aiki tare tare da ƙungiyoyin asibiti don ba da shawarwarin abinci na ƙwararrun mutanen da ke zaune tare da EB don haɓaka lafiyarsu gabaɗaya da walwalar su, taimakawa mahimman warkarwa da rauni da haɓaka rigakafi.
  • Bidiyo – ba da tallafin ƙwararrun asibitocin kiwon lafiya da kuma ba mutane bayanai kan yadda ake sarrafa da iyakance ƙumburi. Mun kuma ba da tallafi don haɓaka kwas ɗin horarwa na 'EB basira don masu aikin motsa jiki', da nufin samar da wannan ta hanyar yanar gizo da kuma cikin mutum.
  • Shelar - tallafawa asibitocin kai-da-kai da yawa da ke baiwa mutanen da ke da EB damar samun kulawar kwararru kusa da gida. Hakanan muna tallafawa horo a cikin sabis na kiwon lafiya na gida don haɓaka ɗaukar sabis na EB a duk faɗin Burtaniya
  • Taimakon baƙin ciki - ba da tallafi mai amfani da tunani ga iyalai bayan mutuwar dangi tare da EB
  • Wayar da kan jama'a game da EB a cikin al'umma - ƙwararrun ma'aikatan jinya na EB suna iya ɗaukar lokaci don wayar da kan jama'a a makarantu, kwalejoji da wuraren aiki, da kuma ba da kwasa-kwasan horo na EB, halartar taro, nune-nunen da sauran abubuwan da suka faru.
  • Bincike - Tallafin mu yana ba ƙwararrun ma'aikatan jinya na EB damar gudanarwa ko taimakawa tare da mahimman ayyukan bincike. Gudunmawar ƙungiyoyin kiwon lafiya na EB a wannan yanki na da mahimmanci don haɓaka ingantattun jiyya, kuma a ƙarshe, nemo magani ga EB. Nemo ƙarin game da mu dabarun bincike
  • Haɓaka samfur da ƙima - Tallafin mu yana bawa ƙwararrun kiwon lafiya damar gudanar da gwaje-gwajen kimanta samfuri masu mahimmanci da haɓakawa samfurori na musamman ga bukatun al'ummar EB, wanda bazai samuwa ba
  • Publications - muna aiki tare da ƙwararrun ƙungiyoyin kiwon lafiya na EB don tabbatar da akwai nau'ikan wallafe-wallafe da kayan aiki iri-iri, gami da ba da tallafin ci gaban ƙasa da ƙasa. jagororin duniya ga mutanen da ke zaune tare da EB da kuma masu sana'a. Waɗannan jagororin suna ba da ingantattun bayanai, cikakkun bayanai, masu iko da ingantaccen bayani
  • Training - Taimakon mu yana tabbatar da cewa ƙwararrun ma'aikatan aikin jinya na EB sun sami damar raba ilimin su da ƙwarewar su tare da wasu da ke zaune da aiki tare da EB, gami da masu kulawa da sauran ƙwararrun kiwon lafiya, ta yadda za a sami mafi kyawun kulawa koyaushe.

Kwararrun EB

An jera bayanan tuntuɓar cibiyoyin EB guda huɗu a cikin Burtaniya a ƙasa (an nuna alamar alama*), da kuma sauran asibitocin da kwararrun EB suke. Za mu ƙara ƙarin zuwa wannan jerin don haka idan ba a jera asibitin ku ba amma kuna son a taimaka tuntuɓar ƙungiyar kiwon lafiya, da fatan za a tuntuɓi. mu tawagar. Hakanan zamu iya taimakawa tare da masu ba da shawara ko fahimtar ƙungiyar kiwon lafiya ta fi dacewa da yanayin ku.

Tawagar EB -

Telephone: 0121 3338757/8224 (ambaci cewa yaron yana da EB)

Emel: eb.team@nhs.net

 

Switchboard -

Telephone: 0121 333 9999

website: bwc.nhs.net

Tawagar EB -

Sharon Fisher, ma'aikaciyar jinya ta likitan yara ta EB:

Telephone: 07930 854944,

Emel: sharon.fisher@ggc.scot.nhs.uk

 

Kirsty Walker, ma'aikaciyar jinya a fannin fata:

Telephone: 07815 029269

Emel: Kirsty.walker@ggc.scot.nhs.uk

 

Dr Catherine Jury, mai ba da shawara kan ilimin fata:

Telephone: 0141 451 6596

 

Switchboard:

Telephone: 0141 201 0000

website: nhsggc.org.uk

Tawagar EB -

Dr Catherine Jury, mai ba da shawara kan ilimin fata:

Telephone: 0141 4516596

 

Susan Herron, mataimakiyar Tallafin Kasuwancin EB:

Telephone: 0141 201 6447

Emel: susan.herron@ggc.scot.nhs.uk

 

Switchboard (A&E):

Telephone: 0141 414 6528

website: nhsggc.org.uk

Tawagar EB:

Telephone: 0207 829 7808

Emel: eb.nurses@gosh.nhs.uk

 

Switchboard:

Telephone: 0207 405 9200,

website: godiya.nhs.uk

Manajan EB:

Telephone: 020 7188 0843

 

liyafar Cibiyar Cututtuka da ba kasafai ba:

Telephone: 020 7188 7188 tsawo 55070

Emel: gst-tr.dermatologyreferralsEB@nhs.net

Adireshin: Rare Disease Center, 1st bene, South Wing, St Thomas' Hospital, Westminster Bridge Road, London SE1 7EH

Tawagar EB

Telephone: 0121 424 5232

Emel: ebteam@uhb.nhs.uk

 

Switchboard

Telephone: 0121 424 2000

website: hgs.uhb.nhs.uk/solihull-asibiti