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Samun dama ga Kwararrun Kulawa don EB

Mutumin da ke cikin wurin likita tare da suturar kariya a kafada da hannu.

Mun san akwai fannoni daban-daban na kulawar ƙwararrun epidermolysis bullosa (EB) da za a yi la'akari da su, tun daga neman kulawa daga kwararrun EB zuwa ma'amala da balaguro zuwa alƙawuran kiwon lafiya. 

Wannan shafin yana ba da jagora akan duk abin da kuke buƙatar sani, kamar yadda DEBRA's EB Community Support Team ke aiki tare da ƙwararrun EB da kuma yadda zamu iya taimaka muku samun mahimman alƙawuran kiwon lafiya na EB tare da mu. tallafin balaguron balaguro.

 

Contents:

  1. Yadda DEBRA UK ke tallafawa mutanen da ke zaune tare da EB
  2. Samun damar EB kwararrun kiwon lafiya
  3. Inda cibiyoyin kwararrun EB suke
  4. Taimakawa don tafiya zuwa alƙawuran kiwon lafiya na EB
  5. Gudanar da takardar sayan magani na EB

 

Yaya DEBRA UK goyon bayans mutanen da ke zaune tare da EB 

Rayuwa tare da EB na iya yin tasiri a fannoni da yawa na rayuwar ku. Bayan kulawar likita kawai, wannan na iya haɗawa da alaƙa, ilimin ku, aikinku, kuɗi, da masaukinku. Mu DEBRA EB Community Support Team yana nan don tallafa muku ta waɗannan ƙalubalen duk da haka za mu iya. Muna taimaka wa al'ummar EB tare da bayanai, aiki, tallafi na kuɗi da motsin rai, jagora da shawarwari.

Muna kira ne kawai Litinin-Jumma'a 9am-5pm akan 01344 771961 (zaɓi 1). Bayan wadannan sa'o'i za ku iya ko da yaushe yi mana imel a Communitysupport@debra.org.uk ko barin sako za mu dawo gare ku da wuri-wuri.

Samun damar EB kwararrun kiwon lafiya

Idan kana da EB amma ba a ƙarƙashin kulawar ƙungiyar kwararru ta EB, GP ɗinka na iya tura ka. Da fatan za a yi amfani da samfurin wasiƙa da aka bayar a ƙasa don aikawa zuwa ga GP ɗin ku.

A matsayinka na majiyyaci, kana da hakkin neman mai ba da shawara wanda kake so. Kuna iya samun ƙarin bayani game da abin da zaɓinku kuke da haƙƙin yin akan Yanar gizon NHS.

Sabis na kulawa na biyu, gami da masu ba da shawara ga cibiyoyin kwararru, suna samuwa ga waɗanda ke zaune a Burtaniya. Don ƙarin bayani game da samun damar sabis na NHS idan kuna ziyartar ƙasar waje, da fatan za a ziyarci Yanar gizon NHS.

Mutanen da ke da EB galibi suna da buƙatu masu sarƙaƙƙiya, don haka ƙila a sami ƙungiyar kwararrun kiwon lafiya da ke aiki tare. Wannan ƙungiyar na iya haɗawa da mai ba da shawara, likitan hakori, likitan abinci, likitan motsa jiki, likitan motsa jiki, da ƙwararren ma'aikacin jinya.

Wannan ba cikakken lissafin ba ne, kuma idan kun yi alƙawari ƙwararrun ƙungiyar EB ɗinku za su yi aiki tare da ku don ƙirƙirar tsarin jiyya wanda ya fi dacewa da ku. 

Ka'idojin Gidajen Harkokin Clinical (CPGs) sune jerin shawarwari don kulawar asibiti, bisa ga shaidar da aka samu daga ilimin kimiyyar tsakiya da kuma ra'ayin ƙwararru. Waɗannan CPGs suna taimaka wa ƙwararrun kiwon lafiya su fahimci yadda mafi kyawun kula da wani tare da EB, don haka yana iya zama taimako don raba wasu alƙawuran ku. 

Mun kuma ƙirƙiri jagorar kula da marasa lafiya na EB don ƙwararrun kiwon lafiya, suna ba da shawarwari kan abubuwan da za su guje wa da kuma shawarwari masu amfani yayin mu'amala da wanda ke da EB.

Ƙungiyar Tallafin Al'umma ta DEBRA yana aiki tare da ƙwararrun cibiyoyin EB. Muna halartar asibitoci akai-akai, muna ba da tallafi ga membobinmu da abokan aikin NHS.   

Ƙungiyar Taimakon Al'umma ta EB suna hulɗa akai-akai tare da cibiyoyin EB, waɗanda galibi suna tura majinyatan su zuwa gare mu don ƙarin tallafi dangane da EB ɗin su. Ƙungiyarmu kuma tana taimakawa tare da jagora, shawarwari, fa'idodi, tallafi na tunani, mai kulawa da tallafin iyali, ilimi, da kuɗi. 

Inda cibiyoyin kwararrun EB suke

akwai hudu kwararrun cibiyoyin EB a Ingila da daya cikin Scotland, wadata ayyuka ga yara da manya. Kuna iya samun ƙarin bayani a nan game da waɗannan cibiyoyin kwararru, waxanda suke located a: 

Babban Asibitin Titin Ormond

Babban titin Ormond, London, WC1N 3JH

Asibitin St Thomas

Hanyar Westminster Bridge, London, SE1 7EH 

Asibitin Solihull 

Lode Lane, Solihull, B91 2JL 

Asibitin yara na Birmingham 

Layin Karfe, Queesway, Birmingham, B4 6NH 

Asibitin Royal na Yara & Asibitin Jami'ar Sarauniya Elizabeth 

1345 Govan Road, Glasgow, Scotland, G51 4TF 

Da fatan za a tuna cewa cibiyoyin kwararru na EB na iya yin aiki daban-daban idan ana batun gudanar da alƙawura. Ga abin da kuke buƙatar sani game da kowace cibiya: 

 

Asibitin Solihull 

Soke ko sake tsara alƙawura: 

  • Marasa lafiya suna buƙatar tuntuɓar mai kula da EB akan 0121 424 5232. 
  • Idan Asibitin Solihull yana buƙatar soke alƙawari, mai gudanarwa zai kira don ba da shawara kuma ya aika da wasiƙa yana ba da wata ranar alƙawari.   

  

Asibitin Mata da Yara na Birmingham (BWCH) 

Soke ko sake tsara alƙawura: 

  • Marasa lafiya na iya yin kira ko aika imel ga ƙungiyar jinya ko tuntuɓar sakataren EB. 
  • Idan BWCH na buƙatar soke alƙawari, za su kira da aika wa marasa lafiya rubutu, kuma su bi wasiƙar da ke ba da wata ranar alƙawari.  

  

Babban asibitin Ormond Street (GOSH) 

Soke ko sake tsara alƙawura: 

  • Kowane majiyyaci yanzu an yi rajista zuwa MyGOSH App wanda ke ba ku damar sadarwa tare da ƙungiyar GOSH. Duk buƙatun game da alƙawura yakamata a ƙaddamar da su ta hanyar app. 
  • A madadin, marasa lafiya na iya tuntuɓar ƙungiyar EB don soke alƙawari ta waya akan 0207 829 7914. Da fatan za a bar ɗan gajeren saƙo tare da sunan yaronku ko lambar asibiti. 
  • Idan GOSH yana buƙatar soke asibiti, ƙungiyar za ta kira ko aika wa majiyyaci wasiƙa.  

  

Asibitin St Thomas  

Soke ko sake tsara alƙawura: 

  • Marasa lafiya na iya yin buƙatu ta hanyar Gidan yanar gizon DrDoctor ko tuntuɓi mai kula da EB na asibitin. A madadin, marasa lafiya za su iya tuntuɓar EB ɗin Kwararrun Nurse na Clinical da aka keɓe. Mai Gudanarwa zai yi canje-canje kuma ya sanar da ƙungiyar jinya dangane da nau'in ziyarar. 
  • Idan an soke asibitin, mai gudanarwa zai tuntubi marasa lafiya ta waya don sabuntawa game da sabon lokacin alƙawari.   

  

Glasgow Royal Infirmary da Asibitin Yara 

Soke ko sake tsara alƙawura: 

  • Ƙungiyar EB za ta tuntuɓi marasa lafiya kusan mako guda kafin alƙawarin su. Lokacin da suka tuntube ku, zaku iya tattauna sake tsara alƙawarinku idan an buƙata. 
  • A madadin, zaku iya tuntuɓar ƙungiyar EB kai tsaye akan 0141 201 6447.   

Taimakawa don tafiya zuwa alƙawuran kiwon lafiya na EB

Mun san tsada da damuwa zai iya zama tafiya zuwa alƙawuran kiwon lafiya na EB, musamman ga wadanda wanda da to tafiya mai nisa zuwa gwani tsakiya akwai tallafin kudi ne don farashin tafiye-tafiye zuwa EB taimake ku da waɗannan tafiye-tafiye ko da yake. 

Muna bayar tallafi da hanyoyin tallafa muku da tafiya zuwa alƙawuran kiwon lafiya na EB, har da DEBRA UK ayyuka da abubuwan da suka faru.

Idan kuna da cutar ta EB, kuna ƙarƙashin kulawar ɗaya daga cikin cibiyoyin ƙwararrun, kuma kuna buƙatar taimako tare da tafiya zuwa alƙawuranku, ƙila ku cancanci samun tallafi daga Tsarin Kuɗi na Kula da Lafiya na NHS. Wannan zai ba ku damar neman dawo da kuɗin tafiya mai ma'ana. Da fatan za a ziyarci gidan yanar gizon NHS don neman ƙarin bayani game da tsarin kuma duba idan kun cancanci. 

Hakanan kuna iya ragewa jama'a gaba daya farashin sufuri tare da zaɓuɓɓuka kamar a Katin dogo na Nakasassu ko a Wutar Bus na Nakasassu.

Gudanar da takardar sayan magani na EB

Yana iya ɗaukar lokaci don sarrafa alƙawura na EB, takaddun magani, da duk sauran abubuwan da suka shafi lafiya. Don rage damuwa da ke zuwa tare da wannan, yawancin membobin mu na DEBRA UK suna amfani da sabis na isar da gida, kamar Bullen Lafiya. 

Bullen ya ƙware a cikin buƙatun kula da rauni kuma yana ba da sabis na sayan magani ga marasa lafiya epidermolysis bullosa, inda suke isar da magunguna, gami da sutura, zuwa gida. Don ƙarin bayani, da fatan za a ziyarci Bullen's website.

Hakanan kuna iya samun cancantar karɓar takaddun NHS na kyauta, kuma kuna iya duba abin da kuka cancanci karɓa akan gidan yanar gizon NHS.

Idan kun biya kuɗi da yawa na takardun magani na NHS, kuna iya ajiye kuɗi tare da a Takaddar Takaddar Biyan Kuɗi (PPC). PPC tana rufe duk takaddun takaddun ku na NHS ba tare da la'akari da adadin abubuwan da kuke buƙata ba. Gidan yanar gizon NHS yana ba da ƙarin bayani game da zaɓuɓɓukan PPC daban-daban, farashi, da yadda zaku iya nema.