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NHS specialist EB Healthcare

A statue of Mary Seacole stands proudly in front of a large circular bronze panel, set within a landscaped area rich with greenery.

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

For professionals

  • 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

  • Our EB Community Support Team provides information, guidance and advocacy for people living with EB, their families and carers through clinics, events, on-line appointments, and Monday to Friday 9am to 5pm through the EB Information and Enquires phone line

  • We offer our members 24/7 mental health support on-line, and depending on the specific circumstances, we offer specialist mental health counselling sessions

  • We provide respite opportunities for our members and their families through our holiday homes
  • We enable our members to connect with one another through a range of in-person and online events

  • We provide bereavement support for our members

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

EB Specialists

Contact details for the four EB centres of excellence in the UK are listed below (indicated with an asterisk*), as well as other hospitals where EB specialists are located. We will be adding more to this list so if your hospital isn’t listed but you would like help contacting a healthcare team, please get in touch with our team. We can also help with referrals or understanding which healthcare team is most suitable for your individual circumstances.

Clinical Lead

Malobi Ogboli

Email: malobi.ogboli@bch.nhs.uk

EB Team

Telephone: 0121 3338757/8224 (mention that the child has EB)

Email: eb.team@nhs.net

Switchboard: 0121 333 9999

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

EB Team

Sharon Fisher, EB Paediatric clinical nurse:

Telephone: 07930 854944,

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

Kirsty Walker, Dermatology nurse:

Telephone: 07815 029269

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

Dr Catherine Jury, Dermatology Consultant:

Telephone: 0141 451 6596

Switchboard0141 201 0000

Website: nhsggc.org.uk

EB Team

Dr Catherine Jury, Dermatology Consultant:

Telephone: 0141 4516596

Susan Herron, EB Business Support assistant:

Telephone: 0141 201 6447

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

Switchboard (A&E)0141 414 6528

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

EB consultants

  • Professor Jemima Mellerio
  • Professor John McGrath
  • Dr Danielle Greenblatt

Clinics are held at the Rare Diseases Centre, 1st floor, South Wing, St Thomas’ Hospital, Westminster Bridge Road, London SE1 7EH.

EB administrator

Telephone: 020 7188 0843

Rare Diseases Centre reception

Telephone: 020 7188 7188 extension 55070

Emailgst-tr.dermatologyreferralsEB@nhs.net

Website: https://www.guysandstthomas.nhs.uk/our-services/adult-epidermolysis-bullosa-eb