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NHS specialist EB Healthcare

Një statujë e Mary Seacole qëndron me krenari përballë një paneli të madh rrethor prej bronzi, të vendosur brenda një zone të peizazhuar të pasur me gjelbërim.

We work in partnership with the NHS and other organisations to ensure that people with EB in the UK get the healthcare and wellbeing support they need.

In 2008 we partnered with the NHS to set up the National Specialised Commissioning Group (NSCG) to oversee the provision of specialist healthcare for people with all types of EB in the UK. Today the NHS provides a world-class EB healthcare service through four specialist EB healthcare centres and the Scottish EB health service. And in 2017 we provided co-funding for the Rare Disease Centre, a first of its kind facility at St.Thomas’ Hospital in London which provides specialist healthcare support for adults and children with complex rare genetic diseases, including EB.

Throughout our history we have and continue to invest in initiatives with the objective of improving patient outcomes for people living with EB. From the establishment of specialist podiatry services and the development of an accredited podiatry course to clinical and research fellows, we continue to explore possibilities and partnerships that will benefit our members and the wider EB community today and in the future.

 

How we work to enhance healthcare and wellbeing support for the EB community

Për profesionistët

  • We provide grants for funding specialist equipment needed by the EB healthcare centres, in-patient support grants to help members with some of the daily costs associated with hospital stays, and member grants for urgent and essential equipment

  • We support the development of clinical practice guidelines (CPGs) which provide a set of recommendations for EB clinical care based on evidence gained from medical science and expert opinion. We also provide patient versions

  • We have partnered with NHS England to analyse EB patient data, and we will use the results to provide clear facts and figures to clinicians/GPs, patients and their carers, government, and the public, to help increase understanding and secure the support we need

For people living with EB

For all the EB community

  • Our EB Community Support Managers can accompany, and support our members and the EB healthcare teams at regional and outreach clinics

  • We connect our members with experts from the fields of Research and Health through our webinar series providing the opportunity to learn about different health and research topics relating to EB, and have questions answered by the experts

Specialistët e EB

Detajet e kontaktit për katër qendrat e ekselencës EB në MB janë renditur më poshtë (treguar me një yll*), si dhe spitale të tjera ku ndodhen specialistët e EB. Ne do të shtojmë më shumë në këtë listë, kështu që nëse spitali juaj nuk është i listuar, por ju dëshironi ndihmë për të kontaktuar një ekip të kujdesit shëndetësor, ju lutemi kontaktoni me ekipi ynë. Ne gjithashtu mund të ndihmojmë me referime ose të kuptojmë se cili ekip i kujdesit shëndetësor është më i përshtatshëm për rrethanat tuaja individuale.

Plumbi klinik

Malobi Ogboli

Email: malobi.ogboli@bch.nhs.uk

Ekipi EB

Telefon: 0121 3338757/8224 (përmendni se fëmija ka EB)

Email: eb.team@nhs.net

Tabela komerciale: 0121 333 9999

Webfaqja: https://bwc.nhs.uk/epidermolysis-bullosa

Ekipi EB

Sharon Fisher, infermiere klinike pediatrike EB:

Telefon: 07930 854944,

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

Kirsty Walker, infermiere dermatologjike:

Telefon: 07815 029269

Email: kirsty.walker@ggc.scot.nhs.uk

Dr Catherine Juria, Konsulent Dermatologjik:

Telefon: 0141 451 6596

komutator0141 201 0000

Webfaqja: nhsggc.org.uk

Ekipi EB

Dr Catherine Juria, Konsulent Dermatologjik:

Telefon: 0141 4516596

Susan Herron, asistente EB Business Support:

Telefon: 0141 201 6447

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

komutator (A&E)0141 414 6528

Webfaqja: https://bwc.nhs.uk/epidermolysis-bullosa

Konsulentët EB

  • Profesoresha Jemima Mellerio
  • Profesor John McGrath
  • Dr Danielle Greenblatt

Klinikat mbahen në Qendrën e Sëmundjeve të Rralla, kati 1, Krahu Jugor, Spitali St Thomas', Westminster Bridge Road, Londër SE1 7EH.

Administratori i EB

Telefon: 020 7188 0843

Pritja në Qendrën e Sëmundjeve të Rralla

Telefon: 020 7188 7188 zgjerimi 55070

Emailgst-tr.dermatologjireferralsEB@nhs.net

Faqja e internetit: https://www.guysandstthomas.nhs.uk/our-services/adult-epidermolysis-bullosa-eb