Accessing Specialist Care for EB
We know there are many different aspects of epidermolysis bullosa (EB) specialist care to consider, from finding care from EB specialists to dealing with travel to healthcare appointments.
This page offers guidance on everything you may need to know, such as how DEBRA’s EB Community Support Team works with EB specialists and how we can help you get to essential EB healthcare appointments with our travel support grants.
Contents:
- How DEBRA UK supports people living with EB
- Accessing EB specialist healthcare
- Where EB specialist centres are located
- Support for travel to EB healthcare appointments
- EB prescription management
How DEBRA UK supports people living with EB
Living with EB can have an impact on many areas of your life. Beyond just medical care, this can include relationships, your education, work, finances, and your accommodation. Our DEBRA EB Community Support Team is here to support you through these challenges however we can. We help the EB community with information, practical, financial and emotional support, guidance and advocacy.
We’re only a call away Monday-Friday 9am-5pm on 01344 771961 (option 1). Outside of these hours you can always email us at communitysupport@debra.org.uk or leave a message and we will get back to you as soon as possible.
Accessing EB specialist healthcare
If you have EB but are not under the care of an EB specialist team, your GP can refer you. Please use the letter template provided below to send to your GP.
As a patient, you also have the right to request a consultant of your choice. You can find out more about what your choices you have the right to make on the NHS website.
Secondary care services, including referrals to specialist centres, are available to those who reside in the UK. For more information about accessing NHS services if you’re visiting from abroad, please visit the NHS website.
People with EB often have complex needs, so there may be a diverse team of healthcare specialists working together. This team may include a consultant, dentist, dietician, podiatrist, physiotherapist, and specialist nurse.
This is not an exhaustive list, and when you have an appointment your specialist EB team will work with you to create a treatment plan that’s best for you.
Clinical Practice Guidelines (CPGs) are a set of recommendations for clinical care, based on evidence gained from medial science and expert opinion. These CPGs help healthcare professionals understand how to best treat someone with EB, so may be helpful to share for some of your appointments.
We have also created EB patient management guidance for healthcare professionals, offering advice on things to avoid and useful tips when dealing with someone who has EB.
DEBRA’s EB Community Support Team works closely with the specialist EB centres. We regularly attend clinics, offering support to our members and NHS colleagues.
The EB Community Support Team are in regular contact with the EB centres, who often refer their patients to us for further support relating to their EB. Our team also helps with guidance, advocacy, benefits, emotional support, carer and family support, education, and finances.
Where EB specialist centres are located
There are four specialist EB centres in England and one in Scotland, providing services for children and adults. You can find out more here about these specialist centres, which are located at:
Great Ormond Street Hospital
Great Ormond Street , London, WC1N 3JHSt Thomas’ Hospital
Westminster Bridge Road, London, SE1 7EHSolihull Hospital
Lode Lane, Solihull, B91 2JLBirmingham Children’s Hospital
Steelhouse Lane, Queesway, Birmingham, B4 6NHRoyal Hospital for Children & Queen Elizabeth University Hospital
1345 Govan Road, Glasgow, Scotland, G51 4TFPlease keep in mind that EB specialist centres may operate differently when it comes to managing appointments. Here’s what you need to be aware of for each centre:
Solihull Hospital
Cancelling or rescheduling appointments:
- Patients need to contact the EB administrator on 0121 424 5232.
- If Solihull Hospital need to cancel an appointment, the administrator will call to advise and send a letter offering another appointment date.
Birmingham Women’s and Children’s Hospital (BWCH)
Cancelling or rescheduling appointments:
- Patients can either call or email the nursing team or contact the EB secretary.
- If BWCH need to cancel an appointment, they will call and text patients, and follow up with a letter offering another appointment date.
Great Ormond Street Hospital (GOSH)
Cancelling or rescheduling appointments:
- Every patient is now signed up to the MyGOSH App which enables you to communicate with the GOSH team. All requests regarding appointments should be submitted via the app.
- Alternatively, patients can contact the EB team to cancel an appointment by phone on 0207 829 7914. Please leave a short message with your child’s name or hospital number.
- If GOSH need to cancel a clinic, the team will call or send a letter to the patient.
St Thomas’ Hospital
Cancelling or rescheduling appointments:
- Patients can make requests via the DrDoctor website or contact the hospital’s EB co-ordinator. Alternatively, patients can contact their allocated EB Clinical Nurse Specialist. The Co-ordinator will make the changes and inform the nursing team depending on the visit type.
- If the clinic is cancelled, the co-ordinator will contact patients by phone to update about the new appointment time.
Glasgow Royal Infirmary and Children’s Hospital
Cancelling or rescheduling appointments:
- The EB team will contact patients approximately one week before their appointment. When they contact you, you can discuss rescheduling your appointment if required.
- Alternatively, you can contact the EB team directly on 0141 201 6447.
Support for travel to EB healthcare appointments
We offer grants and ways to support you with travel to EB healthcare appointments, as well as DEBRA UK activities and events.
If you have an EB diagnosis, are under the care of one of the specialist centres, and need help with travel to your appointments, you may be eligible for support from the NHS Healthcare Travel Costs Scheme. This would allow you to claim a refund of reasonable travel costs. Please visit the NHS website to find out more about the scheme and see if you are eligible.
You may also be able to reduce general public transport costs with options like a Disabled Persons Railcard or a Disabled Persons Bus Pass.
EB prescription management
It can be time consuming managing EB appointments, prescriptions, and all other health related matters. To reduce the stress that comes with this, many of our DEBRA UK members use home delivery services, such as Bullen Healthcare.
Bullen specialise in wound care needs and offer a prescription service for epidermolysis bullosa patients, where they deliver prescriptions, including dressings, to the home. For more information, please visit Bullen’s website.
You may also be eligible to receive free NHS prescriptions, and you can check what you are eligible to receive on the NHS website.
If you pay for a lot of NHS prescriptions, you may save money with a Prescription Prepayment Certificate (PPC). A PPC covers all your NHS prescriptions regardless of how many items you need. The NHS website offers more information about different PPC options, costs, and how you can apply.
Page published: October 2024
Last review date: March 2025
Next review date: March 2026