How to be Heard - Advocating for Yourself in the NHS

Mast Cell Action are thrilled to be able to share this new event with you.

The 'How to be Heard - Advocating for Yourself in the NHS' event is designed to help individuals learn how to approach MCAS whilst accessing medical care within the NHS and how to advocate for yourself.

This event is hosted by Vicky, she was diagnosed by the NHS in December 2023, after a two year period of working with immunologists at Hull Royal Hospital. Prior to this, she had experienced eight years of severe health issues which had been misdiagnosed as Fibromyalgia. During this period and influenced by Jennifer Brea’s own MCAS journey, Vicky researched and encouraged doctors to consider MCAS as a possibility. After a four year fight to be heard, she managed to push through referrals against strong opposition and complete lack of medical knowledge around the condition within the NHS, to finally be the first MCAS diagnosis that her immunologist had ever confirmed.

Vicky’s struggle has motivated her to help other people living with MCAS on their journeys, towards better health and understanding. Moving forward, she has been working within politics to improve the understanding of disabled and chronic health issues at a local government level, as well as joining the Mast Cell Action team as an advocate for the condition and charity. Her ultimate goal is to build a diagnostic and advocacy tool for people, to help them through their journey, help prevent against misdiagnosis and keep better ownership of their own health and wellbeing. This is still in early development, but this discussion will cover some basic steps someone with MCAS can take at the moment, to aid in their own diagnosis, working with their doctors.

This discussion will cover;

• Vicky’s personal MCAS journey and experience.
• The current situation with the NHS, MCAS and how that impacts people with chronic health conditions
• How gender bias may impact your experience.
• The importance of arming yourself with knowledge.
• Evidencing and recording your symptoms.
• Right to choose and pushing through testing requests.
• Taking ownership of your diet and lifestyle.
• Working together with your medical team, moving forwards.

Please submit your questions in advance to charise@mastcellaction.org

We will try our best to include answers to these either within the presentation, or in the final section on community questions.

If you are interested in advocacy please check out our new advocacy page on our website here. 

What you need to know

We will be running these sessions virtually through Zoom, you are welcome to attend with your microphone and camera off if you feel more comfortable doing so. We will email out the Zoom link to join before the session. Please check your spam folder if you can't find this link.

Please book a place for everyone who will be attending online, even if you'll be attending using the same device. This helps us keep the event running smoothly and safely and also helps us to decide what kind of events to organise in the future.

Please contact events@mastcellaction.org with any questions.

Attendance is free, although donations are much appreciated and places are limited. If you wish to attend then please register. If you change your mind or your plans change then please cancel your place so we can offer it to someone else. If you are able to do so, there is an option to make a small donation, which helps Mast Cell Action to continue supporting the community with events like this.

How Mast Cell Action Uses Your Data

We will collect the information you provide on Ticket Tailor to gather statistics about how many people attend our events and how many people return to our events and also demographic information about who is attending Mast Cell Action events. These statistics are vital to helping charities like Mast Cell Action demonstrate the impact of our work, and we use them to report to our funders and other groups to demonstrate the difference that funding support can make.

In our database, your name will be stored along with these statistics but identifying information is never included in reports. We don’t collect or store more information than needed to generate these statistics and have no access to any financial information you provide to Ticket Tailor.

All information is stored in line with our GDPR policy.

Unless you ask us to, we won’t sign you up to any mailing lists and will only send you information related to your attendance at this event. If you want to hear about more events like this in the future, please sign up to be a friend of Mast Cell Action.