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EB Clinic Information

EB Clinic Information

Last updated 25/10/20

Disclaimer: Information and advice regarding Coronavirus (COVID-19) is rapidly changing. We are updating the website regularly and aiming to focus our information on areas that are of most significance to people living with EB. As the situation evolves, information will vary across the four nations; you should always consult and follow the advice given by your national government, the NHS and other regulatory authorities. 

We are in constant communication with the teams at the EB Centres of Excellence in the UK. We aim to keep this up to date with the latest clinic information and any advice the clinical teams have for people living with EB during these uncertain times.

All centres will continue running the EB services; however, Coronavirus (COVID-19) is impacting the way these teams are able to work. This is a very busy time for all teams, so responses may take longer than usual.

Click on the heading below to be taken to that section:

Appointments and EB clinics

  • Birmingham Women’s and Children’s Hospital NHS Foundation Trust (BWC)
  • Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH)
  • Guy’s & St. Thomas’ NHS Foundation Trust (GSTT)
  • Solihull Hospital (University Hospitals Birmingham NHS Foundation Trust)
  • EB care in Scotland

Advice for EB patients

  • Telephone appointments
  • EB-specific advice for COVID-19
  • Medicines & bandages

 


Appointments and EB clinics

Birmingham Women’s and Children’s NHS Foundation Trust (BWCH)

All clinic appointments and home visits will now be done via telephone and, in some cases, moved to an alternative date and time. If your appointment is moved, you will receive a letter in the post.

Emergencies will be handled on a case-by-case basis.

The best way to contact the EB nursing team is to email (eb.team@nhs.net) with your child’s name, date of birth, query and the best contact number (if you require a call back). Do not call the EB office as there may be no one available to take your call; do not contact the nurses individually.

Please click here for more information from BWCH relating to Coronavirus (COVID-19) and visit the hospital's website for more general information about BWCH.

 

Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH)

Patients and families under the care of Great Ormond Street Hospital are encouraged to contact the EB nursing team via the MYGOSH Portal. MYGOSH allows access to parts of their electronic record and allows for secure communication between clinicians and families. Photographs can also be shared securely for advice and feedback. All you need is a device that can connect to the internet, and an up to date internet browser such as chrome or internet explorer. There is also an app you can download to your mobile phone for quick and easy access on a smartphone.

For users that have not yet signed up, please email MyGOSH.Helpdesk@gosh.nhs.uk who will be happy to help activate the service for you. Please do not send emergency requests via this portal or via the eb.nurses@gosh.nhs.uk generic mailbox. Due to higher work volumes during the COVID 19 Pandemic, please expect a response back within 3 working days. 

All appointments will now be done via telephone and, in some cases, moved to an alternative date and time. If your appointment is moved, you will receive a letter in the post.

Emergencies and urgent surgeries will be handled on a case-by-case basis.

You can also contact the EB nursing team is to email (eb.nurses@gosh.nhs.uk) Monday – Friday between 08:00 and 20:00 with your child’s name, date of birth, query and the best contact number (if you require a call back). Do not call the EB office as there may be no one available to take your call; do not contact the nurses individually.

Please click here for more information from GOSH relating to Coronavirus (COVID-19) and visit the hospital's website for more general information about GOSH.

 

Guy’s & St. Thomas’ NHS Foundation Trust (GSTT)

Click here for information and updates for the Adult EB service.

Routine appointments have resumed and patients are being offered either telephone or face to face appointments depending on clinical need or patient preference. Emergencies and urgent requests for appointments are dealt with on a case-by-case basis.

The EB nursing team can be contacted for clinical advice.

For clinic and appointment queries, please call the administrator on 0207 188 0843 or email Annette.Burnett1@gstt.nhs.uk

Please click here for more information from GSTT relating to Coronavirus (COVID-19) and visit the hospital's website for more general information about GSTT.

 

Solihull Hospital (University Hospitals Birmingham NHS Foundation Trust)

EB clinics are still running but on a reduced capacity in order to maintain safe social distancing. Patients may be re-scheduled and those not wishing to attend due to the pandemic can be offered either virtual or telephone appointments. If your appointment is re-scheduled, you will receive a letter in the post.

Emergencies continue to be handled on a case-by-case basis.

For clinic and appointment queries, please call the EB nursing team secretary (Ellie) on 0121 424 5232 / 07527679679 or by emailing ebteamsolihull@heartofengland.nhs.uk 

Please click here for more information from Solihull relating to Coronavirus (COVID-19) and for more general information about the hospital.

 

EB care in Scotland

The EB nurses in Scotland are continuing to communicate with patients via telephone and email. There may be a delay in responding to queries during this busy period. Patients will be notified of any disruptions to access.

No home visits are currently taking place.

For urgent care, please contact your GP or NHS 24.

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Advice for EB patients

Telephone Appointments

Someone from the EB team will ring the number that is most up to date on your hospital record; if this number has changed recently, please contact the EB administrator or use the contact information listed above for your hospital centre to amend your details.

 

EB-specific advice for Coronavirus (COVID-19)

There is currently no specific advice to EB patients because EB impacts everyone differently. Government guidance states everyone must stay home, only going outside for food, health reasons or for essential work. If you must leave your home, you must follow social distancing measures.

  • Patients with milder forms of EB that do not have underlying health conditions are not thought to be at greater risk of developing Coronavirus (COVID-19) compared with the general population.
  • Patients with more severe forms of EB (e.g. individuals who are immunocompromised) should be shielded for 12 weeks in line with current advice by the Department of Health.
  • EB patients with more complex needs or underlying health conditions are being given individualised advice and guidance as required. If you think you might be more vulnerable but are unsure, please contact your EB clinical team directly for consultation.

REMINDER: Anyone aged 70 or over and/or is recommended to have a flu jab each year on medical grounds should stringently follow Government advice. 

All patients must follow current national guidance:

 

Medicines & bandages

Please do not stockpile medicines and bandages; these will still be available to you in the normal way. 

GPs are very busy and it can take a little longer to receive your prescription. Current advice is to request your repeat prescription two weeks in advance.

Many pharmacies throughout the UK offer prescription delivery services. It would be worth ringing your regular pharmacy to see if they offer this service.

Bullen Healthcare has great experience supporting the EB Community and has done so for many years. They consistently hold a large stock of products and supplies used by the EB Community and have even created a dedicated team to help with all EB queries and orders.

Bullen is accepting new registrations from the EB Community who require dressings alongside other medication deliveries. This service is also available to the whole household of someone living with EB requiring dressings.

To contact their EB team directly, please phone: 0800 756 2428 08:00 – 18:00 or visit their website if out of hours: https://www.bullens.com/home-delivery

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