Kupeza chisamaliro chapadera cha EB
Kupeza matenda a EB m'majini n'kofunika kwambiri, makamaka chifukwa kumakupatsani mwayi wopeza chithandizo chapadera cha EB. buku lotsogolera odwala kuti adziwe matenda a labotale Chopangidwa ndi DEBRA International chingakhale chothandiza kukudziwitsani zomwe zingakhudze. Tikudziwa kuti pali zinthu zambiri zosiyanasiyana zokhudza chisamaliro cha epidermolysis bullosa (EB) zomwe muyenera kuganizira, kuyambira kupeza chithandizo kuchokera kwa akatswiri a EB mpaka kuchita maulendo kupita kukaonana ndi azaumoyo.
Tsambali limapereka chitsogozo pa chilichonse chomwe mungafunikire kudziwa, monga momwe DEBRA's EB Community Support Team imagwirira ntchito ndi akatswiri a EB ndi momwe tingakuthandizireni kuti mufike pazachipatala chofunikira ndi EB ndi athu. ndalama zothandizira maulendo.
nkhani;
- Momwe DEBRA UK imathandizira anthu okhala ndi EB
- Kupeza chithandizo chamankhwala cha EB
- Kumene kuli malo apadera a EB
- Thandizo paulendo wopita ku malo azachipatala a EB
- Kuwongolera kwamankhwala a EB
Bwanji DEBRA UK thandizos anthu okhala ndi EB
Kukhala ndi EB kumatha kukhudza mbali zambiri za moyo wanu. Kupatula chithandizo chamankhwala, izi zingaphatikizepo maubwenzi, maphunziro anu, ntchito, ndalama, ndi malo anu ogona. Zathu DEBRA EB Community Support Team ali pano kuti akuthandizeni pamavutowa ngakhale titha. Timathandiza gulu la EB ndi chidziwitso, zothandiza, zachuma ndi zamaganizo, chitsogozo ndi kulengeza.
Tingoyimba foni Lolemba-Lachisanu 9am-5pm pa 01344 771961 (njira 1). Kunja kwa maola awa mutha kutitumizira imelo nthawi zonse communitysupport@debra.org.uk kapena siyani uthenga ndipo tidzabwera kwa inu posachedwa.
Kupeza chithandizo chamankhwala cha EB
Ngati muli ndi EB koma simukuyang'aniridwa ndi gulu la akatswiri a EB, GP wanu akhoza kukulozerani. Chonde gwiritsani ntchito chikalata chomwe chili pansipa kutumiza kwa GP wanu.
Monga wodwala, mulinso ndi ufulu wopempha mlangizi yemwe mwasankha. Mutha kudziwa zambiri za zomwe zisankho zanu muli ndi ufulu wosankha pa webusaiti NHS.
Ntchito zachipatala chachiwiri, kuphatikiza zotumizira ku malo apadera, zimapezeka kwa omwe akukhala ku UK. Kuti mumve zambiri zokhuza kupeza chithandizo cha NHS ngati mubwera kuchokera kunja, chonde pitani ku webusaiti NHS.
izi buku lotsogolera odwala kuti adziwe matenda a labotale Yopangidwa ndi DEBRA International ingakhale yothandiza pokudziwitsani zomwe zingakhalepo pa matenda a majini.
Anthu omwe ali ndi EB nthawi zambiri amakhala ndi zosowa zovuta, kotero pakhoza kukhala gulu la akatswiri azachipatala omwe amagwira ntchito limodzi. Gululi lingaphatikizepo mlangizi, dotolo wamano, katswiri wazakudya, wapansi, physiotherapist, ndi namwino wapadera.
Uwu si mndandanda wokwanira, ndipo mukakhala ndi nthawi yokumana ndi akatswiri anu a EB adzagwira nanu ntchito kuti apange dongosolo lamankhwala lomwe lingakhale labwino kwa inu.
Malangizo Othandizira Odwala (CPGs) ndi magulu amalingaliro a chisamaliro chachipatala, kutengera umboni wopezedwa kuchokera ku sayansi yapakatikati ndi malingaliro a akatswiri. Ma CPG awa amathandiza akatswiri azaumoyo kumvetsetsa momwe angachitire bwino munthu yemwe ali ndi EB, kotero zingakhale zothandiza kugawana nawo ena mwamaudindo anu.
Tapanganso malangizo a kasamalidwe ka odwala a EB kwa akatswiri azaumoyo, kupereka upangiri pazinthu zomwe muyenera kupewa komanso malangizo othandiza pochita ndi munthu yemwe ali ndi EB.
Gulu la DEBRA la EB Community Support Team amagwira ntchito limodzi ndi akatswiri a EB centers. Timapita ku zipatala pafupipafupi, kupereka chithandizo kwa mamembala athu ndi anzathu a NHS.
Gulu la EB Community Support Team limalumikizana pafupipafupi ndi malo a EB, omwe nthawi zambiri amatumiza odwala awo kwa ife kuti awathandizenso zokhudzana ndi EB yawo. Gulu lathu limathandizanso ndi chitsogozo, kulengeza, zopindulitsa, chithandizo chamalingaliro, chisamaliro ndi mabanja, maphunziro, ndi ndalama.
Kumene kuli malo apadera a EB
Pali zinayi akatswiri EB malo ku England ndi imodzi mkati Scotland, kupereka ntchito za ana ndi akulu. Mutha kudziwa zambiri za izi malo akatswiri, zomwe ilipo pa:
Chipatala chachikulu cha Ormond Street
Great Ormond Street, London, WC1N 3JHChipatala cha St Thomas
Westminster Bridge Road, London, SE1 7EHChipatala cha Solihull
Lode Lane, Solihull, B91 2JLChipatala cha Ana ku Birmingham
Steelhouse Lane, Queesway, Birmingham, B4 6NHRoyal Hospital for Children & Queen Elizabeth University Hospital
1345 Govan Road, Glasgow, Scotland, G51 4TFChonde dziwani kuti malo opangira akatswiri a EB amatha kugwira ntchito mosiyana pankhani yoyang'anira nthawi. Izi ndi zomwe muyenera kudziwa pa malo aliwonse:
Chipatala cha Solihull
Kuletsa kapena kukonzanso nthawi zosankhidwa:
- Odwala ayenera kulumikizana ndi woyang'anira EB pa 0121 424 5232.
- Ngati Chipatala cha Solihull chikufunika kuletsa nthawi yokumana, woyang'anira adzayimba kuti alangize ndikutumiza kalata yopereka tsiku lina.
Chipatala cha Amayi ndi Ana cha Birmingham (BWCH)
Kuletsa kapena kukonzanso nthawi zosankhidwa:
- Odwala amatha kuyimba kapena kutumiza imelo ku gulu la anamwino kapena kulumikizana ndi mlembi wa EB.
- Ngati BWCH ikufunika kuletsa nthawi yokumana, imayimbira foni ndikulembera odwala mameseji, ndikutsatira kalata yopereka tsiku lina.
Chipatala cha Great Ormond Street (GOSH)
Kuletsa kapena kukonzanso nthawi zosankhidwa:
- Wodwala aliyense tsopano walembetsedwa ku MyGOSH App yomwe imakuthandizani kuti muzitha kulumikizana ndi gulu la GOSH. Zopempha zonse zokhudzana ndi nthawi yosankhidwa ziyenera kutumizidwa kudzera pa pulogalamuyi.
- Kapenanso, odwala atha kulumikizana ndi gulu la EB kuti aletse nthawi yokumana naye pafoni pa 0207 829 7914. Chonde siyani uthenga wachidule wokhala ndi dzina la mwana wanu kapena nambala yachipatala.
- Ngati GOSH ikufunika kuletsa chipatala, gululo lidzaimbira kapena kutumiza kalata kwa wodwalayo.
Chipatala cha St Thomas
Kuletsa kapena kukonzanso nthawi zosankhidwa:
- Odwala amatha kupempha kudzera pa Webusaiti ya DrDoctor kapena funsani wogwirizanitsa EB wa chipatala. Kapenanso, odwala amatha kulumikizana ndi EB Clinical Nurse Specialist. Co-ordinator apanga zosinthazo ndikudziwitsa gulu la anamwino malinga ndi mtundu waulendo.
- Ngati chipatala chalepheretsedwa, wogwirizira amalumikizana ndi odwala pafoni kuti asinthe za nthawi yatsopano yokumana.
Glasgow Royal Infirmary ndi Chipatala cha Ana
Kuletsa kapena kukonzanso nthawi zosankhidwa:
- Gulu la EB lidzalumikizana ndi odwala pafupifupi sabata imodzi asanakumane nawo. Akakulumikizani, mutha kukambirana za kukonzanso nthawi yanu ngati pakufunika.
- Kapenanso, mutha kulumikizana ndi gulu la EB mwachindunji pa 0141 201 6447.
Thandizo paulendo wopita ku malo azachipatala a EB
Timapereka thandizo ndi njira zothandizira paulendo kupita ku EB chisamaliro chaumoyo, komanso DEBRA UK zochitika ndi zochitika.
Ngati muli ndi matenda a EB, mukuyang'aniridwa ndi amodzi mwa malo odziwa bwino ntchito, ndipo mukusowa thandizo paulendo wopita ku malo omwe mudakumana nawo, mungakhale oyenera kulandira chithandizo kuchokera ku NHS Healthcare Travel Costs Scheme. Izi zimakupatsani mwayi woti mubweze ndalama zolipirira zoyendera. Chonde pitani patsamba la NHS kuti mudziwe zambiri za dongosololi ndikuwona ngati ndinu oyenerera.
Mukhozanso kuchepetsa pagulu ndalama zoyendera ndi zosankha ngati a Anthu olumala Railcard kapena Anthu olumala Bus Pass.
Kuwongolera kwamankhwala a EB
Zitha kutenga nthawi kuyang'anira ma EB, zolemba, ndi zina zonse zokhudzana ndi thanzi. Kuti muchepetse kupsinjika komwe kumabwera ndi izi, ambiri mwa mamembala athu a DEBRA UK amagwiritsa ntchito ntchito zoperekera kunyumba, monga Bullen Healthcare.
Bullen amakhazikika pazosowa zosamalira mabala ndipo amapereka chithandizo chamankhwala kwa odwala EB, komwe amapereka mankhwala, kuphatikizapo kuvala, kunyumba. Kuti mudziwe zambiri, chonde pitani tsamba lathu zonse zokhudza chithandizo chamankhwala cha Bullen's EB.
Mutha kukhalanso oyenera kulandira malangizo aulere a NHS, ndipo mutha kutero onani zomwe mukuyenera kulandira patsamba la NHS.
Ngati mumalipira mankhwala ambiri a NHS, mutha kusunga ndalama ndi a Satifiketi Yolipiriratu Prescription (PPC). PPC imakhala ndi malangizo anu onse a NHS mosasamala kanthu kuti mukufuna zinthu zingati. Webusaiti ya NHS imapereka zambiri zamitundu yosiyanasiyana ya PPC, mtengo wake, ndi momwe mungalembetsere fomu.
Tsamba losindikizidwa: Okutobala 2024
Tsiku lomaliza lomaliza: Marichi 2025
Tsiku lobwereza lotsatira: Marichi 2026