DEBRA ScotlandDid you know that as well as the team based in our head office in Bracknell, we also have a dedicated DEBRA team based in Scotland? The Scotland fundraising team are busy organising events throughout the year, whether that be the annual Big Sports Quiz Dinner, typically held in Glasgow and attended by Vice-President and Sporting Legend, Graeme Souness, or donning a kilt and joining a Kiltwalk in Glasgow, Aberdeen, Edinburgh, or Dundee spreading awareness about DEBRA and epidermolysis bullosa (EB). We also have a dedicated person in Scotland to support people living with EB and their carers. We are the national charity for people living with EB in the UK and are committed to supporting the EB community with a range of services intended to enhance quality of life, whether they are members of DEBRA or not. However, becoming a member of DEBRA makes it easier to access our services and exclusive benefits, currently we have just over 150 members living in Scotland. You can apply to become a DEBRA member online, and membership is free; we’re here to support you. If you are looking to get involved with any fundraising activities based in Scotland, or if you are a DEBRA member who would like to get in touch with the Community Support Team, please reach out to one of our team members below: Laura Forsyth – Deputy Director of Fundraising (Scotland) Laura oversees all fundraising activities based in Scotland, including events and challenges. If you have any fundraising ideas or would like to participate in any of our events, please contact Laura via the details below: [email protected]07872 37273001698 424210 Erin Reilly - Community Support Area Manager - Scotland I joined DEBRA in April 2024 and come from a background of working with adults with disabilities for 10 years, firstly as a support worker and then with a specialist social work team. I hope to bring my experience of working with clients with a wide variety of support needs and understanding of the social and health care systems to DEBRA members in Scotland. [email protected] 07586 716976 If you have a general fundraising enquiry, you can email us: [email protected], where one of the team will get back to you. Alternatively, you can call us: 01698 424210 or write to us at: DEBRA Suite 2D, International House Stanley Boulevard Hamilton International Park Blantyre Glasgow G72 0BN Follow us on Instagram and Facebook to keep up to date with all things DEBRA Scotland! DEBRA Scotland Events and Challenges in Scotland DEBRA Scotland charity shops Support for people with EB Specialist EB healthcare services in Scotland Accessing specialist EB healthcare services in Scotland For EB patients and their families living in Scotland, specialist EB healthcare services are based out of the Royal Hospital for Children in Glasgow (paediatrics) and the Glasgow Royal Infirmary (adults). The EB specialist nurses, and admin team will work with you, your family/carers, and your local healthcare professionals in primary and secondary care, to ensure that you receive optimal care and support for your EB. EB clinics also run in Glasgow, Edinburgh, Dundee, and Aberdeen, and alongside these, many EB patients will also be seen in local dermatology clinics. EB nurses will attend the EB clinics, but you can also arrange to meet with them outside of these clinics by arranging a phone or virtual consultation, and when required home visits or visits to schools or workplaces can also be arranged. To access the EB nursing team, you will need to be referred by your hospital consultant, which is usually your dermatologist or paediatrician. Contents Business Support Assistant EB paediatric services Transition from paediatric to adult services EB adult services Dermatology consultant Scottish EB clinics Psychologist/counselling support Meet the team Business Support Assistant Susan Herron is often the first point of contact for patients who have EB related issues or concerns. She is based at the Glasgow Royal Infirmary. If you have been diagnosed with EB and have an assigned consultant, Susan will be able to signpost you to the services you may need including paediatric and adult EB nursing staff, supporting letters for benefits and travel, and the community support team at DEBRA UK. If you don’t have a confirmed diagnosis, then Susan can help guide you through the assessment process to ensure you get a primary care referral to your local dermatology team. Working days Tuesday, Wednesday, Thursday Contact information Susan Herron - EB Business Support Assistant Address: Glasgow Royal Infirmary, Department Of Dermatology, Walton Building, 84 Castle Street, Glasgow, G4 0SF Email: [email protected] Tel: 0141 201 6447 EB paediatric services Sharon Fisher and Kirsty Walker are the EB paediatric clinical nurse specialists for NHS Scotland. They provide support for all neonates, infants, and children aged 16 years and under in Scotland who are diagnosed with EB from birth onwards. Home visits and hospital clinic appointments along with telephone advice and support are provided. Visits to nurseries and schools are also undertaken to help educate and support staff as needed and should children require surgical procedures then the nurses can help provide specialist advice to anaesthetic and surgical teams about how to safely handle the skin. Working days Sharon Fisher – Monday, Wednesday, and Thursday Kirsty Walker – Tuesday Contact information Sharon Fisher - EB Paediatric Clinical Nurse Specialist NHS Scotland Address: Royal Hospital for Children, Dermatology Department, Admin Block, 1345 Govan Road, Glasgow, G51 4TF Email: [email protected] Tel: 07930 854944 Kirsty Walker - Dermatology Nurse Address: Royal Hospital for Children, Dermatology Department, Admin Block, 1345 Govan Road, Glasgow, G51 4TF Email: [email protected] Tel: 07815 029269 Transition from paediatric to adult services In Scotland there are no specific transition clinics and moving from paediatric to adult services is managed on an individual basis. Discussion around transition to adult services starts at around 15 years of age and involves the patient and their parents. There is no fixed time to move, and transition will take place when it is felt appropriate for the individual. In many cases there is no need for formal transition as the same dermatology consultants will be involved in seeing both children and adults with EB, so the clinics remain the same. The nursing input, however, will change. The EB clinical nurse specialist for adults will typically aim to attend one or two paediatric clinic appointments pre transition to meet the young adult in advance of transition and taking on their care. In the same way, the EB clinical nurse for paediatrics will also aim to attend the patients first adult EB appointment to ensure a smooth handover and transition. EB adult services Maria Avarl is the new clinical nurse specialist for adult patients with EB in Scotland. Maria supports EB patients with their individual treatment needs and can help to provide supporting documentation for workplaces and assist with travel and benefit applications. Maria can provide patient review and support by telephone or text, and she will also see patients within the EB clinics across Scotland. If required home or workplace visits can also be arranged and Maria will also link patients to the DEBRA UK Community Support Team as required. Working days Monday and Wednesday Contact information Maria Avarl - EB Adult Clinical Nurse Specialist Address: Glasgow Royal Infirmary, Dermatology Department, Walton Building, 84 Castle Street, Glasgow, G4 0SF Email: [email protected] Tel: 07772 628831 Dermatology consultant Dr Catherine Jury is a consultant dermatologist who runs clinics for adults and children with EB at the Royal Hospital for Children in Glasgow and the Glasgow Royal Infirmary. Catherine also provides help and support to the EB nurses. How to contact Catherine: Royal Hospital for Children, Glasgow. Tel: 0141 451 6596 Glasgow Royal Infirmary. Tel: 0141 201 6454 Scottish EB clinics Consultant led EB clinics take place in units across Scotland with some taking place monthly and others bi-annually depending on the number of patients require support. The clinics will usually see both children and adults with EB and are supported by the EB nursing team. For more information, please see below: Glasgow - monthly clinic run by Dr. Catherine Jury alternating between adults and paediatrics. Edinburgh – clinics run three times a year and led by Professor Sara Brown. Aberdeen - clinics run twice a year and are led by Dr. Victoria Wray Dundee – one clinic per annum led by Dr. Ross Hearn Psychologist/counselling support There is currently no designated EB NHS psychology support available in Scotland however EB patients in need of psychological support can be referred either by their GP, EB nurse, or lead consultant to local services. Find out more about other mental health support and resources. Manage Cookie Preferences