With the health care service under pressure, it may be only 15 minutes that you have with your doctor to get to know about your newly received EoE diagnosis and ongoing care. But, clearly, for most patients, much more is needed which is increasing the demand for our charity support services.

How Are We Improving Patient Support

Dr Hema Kannappan joined us at the stand. She noted, that Eosinophilic Oesophagitis is a condition that affects every aspect of a patient and their family's life, so they have many questions. Therefore, EOS Network Charity is a valuable resource to help support and educate them. She was pleased to promote our work to help not just patients but doctors like her.

Here is Olena's Report

I recently joined EOS Network, knowing very little about eosinophilic diseases and was eager to assist Amanda and learn more at the event.

As someone living with a chronic disease, I understand the challenges and fears that arise when you don't fully comprehend your condition or have limited treatment options.

At the event, we handed out information packs to approximately 100 doctors and dietitians. The packs included medical guidelines, a symptom tracker, food bolus obstruction plan, and EoE Patient Leaflets. 

I saw doctors and dietitians firing questions at Amanda, and she was brilliantly answering and guiding them from the patient's point of view. 

Having an advocate like Amanda on your side is fantastic when living with an eosinophilic disease!

The doctors were happy to receive the information packs, allowing them to provide their patients with vital knowledge and support in a limited timeframe.

We made valuable new connections at the event, adding around 20 doctors and dietitians to our EOS professional network.

It was encouraging to learn that most professionals in gastroenterology care have heard of EOS Network and actively recommend us. They were interested in the recently produced British Guideline for EoE, which most of them have downloaded from the website.

The last day's early morning began with the EoE working group meeting, led by one of our medical advisers, Dr Marcus KH Auth.

Who are BSPGHAN EoE Working Group, and What do they do?

Eosinophilic Oesophagitis Working Group Formed 2020 Committee Members:

1. Marcus Auth, Chair, Consultant, Liverpool  Also EOS Network advisor
2. Jenny Epstein, Consultant, Chelsea
3. Raj Parmar, Consultant, Liverpool - Alderhey
4. Mark Furman, Consultant, Royal Free
5. Diana Flynn, Consultant, Glasgow
6. Joe Chan, Registrar, Bristol
7. Ed Gaynor, Great Ormond Street
8. Kerryn Moolenschoot, Dietician, St George’s
9. Lucy Jackman, Dietician, GOSH
10. Hema Kannappan, PeGHAN Rep (2021 - 2024)

Corresponding members:

1. Patient and Public Involvement (PPI)
2. Amanda Cordell, Eos Network
3. Julie Harrington, GutsUK

On invitation:

Psychologist, immunologist/allergist (contacts to Royal Free and Southampton), histopathologist, statistician, pharmacologist, an adult gastroenterologist.

EOS network represents the EOS community's voice and needs within the working group. This collaboration has achieved several important pieces of work, including guidance during covid-19, a dietary algorithm for children, and the published BSG / BSPGHAN guidelines for EoE.

At the meeting, one of the current priorities was the Swallowed Topical Steroid Therapy Algorithm for EoE, introduced by Dr Joseph Chan and worked on by the group. Amanda provided valuable insights from the patient's point of view, helping ensure the group developed a patient-centric approach to treatment. 

The other topic of discussion was the transition of EoE care from child to adult services. Dr Raj Pamar is leading a survey project to establish the current services provided in the UK and patients' access to services. This information will guide the working group's next steps to improve this part of the patient's journey.

Get Involved In Transition Care Developments

In the near future, EOS Network will be helping to disseminate these surveys to the patient and the professional community by social media and by email to our registered network.

If you are not registered, join today to ensure you get the opportunity to participate in this and other important projects.

Thanks to the EOS Network's advocacy and outreach, patients in the UK are one step closer to getting the care they deserve!

This is just one of the ways we use donations to improve the future.