We are looking for people who are living with serious allergies, either themselves or supporting children or other members of their families, to help us to shape the information, support and training that we provide, to ensure that we are meeting the needs of everyone affected by serious allergies.
To achieve our mission to ensure a safer environment for everyone with allergies, we need to understand the needs and experiences of people living with serious allergies and their families. Anaphylaxis UK’s Lived Experience Expert Group will inform all aspects of our work and will provide people living with serious allergies an opportunity to directly influence what we do. The group would provide input in a variety of ways, e.g as a whole group, or through smaller focus groups on specific issues, or via questionnaires or surveys, or individually.
We are looking for people who are living with serious allergies, either themselves, or supporting children or other members of their families. We are seeking people who are able to commit to 2 years service on the group, after which we would recruit new group members on a rolling programme to ensure a wide range of views are gathered, and give more opportunities for people to become involved.
The group will consist of up to 20 people at any one time, with a range of experiences of allergy.
Providing first-hand insight into how it actually feels to live with a serious allergy and the practical implications on a day-to-day basis
Identifying gaps in the provision of information and support and other resources, at different stages of the patient journey/stages of life
Providing comments and feedback on future plans for the development of information and resources to meet those gaps
Testing out and reviewing new resources and training
Further development of a library of “patient/individual stories” for use in fundraising, marketing and communications
Supporting press or media calls by speaking to the media (training provided)
Supporting fundraising asks by providing a personal story, either in writing or in person
Providing lived experience representation on project groups
Taking part in research, including signposting to research carried out by other organisations
We will treat your experiences with respect, allowing you to share as much as you feel able to.
We will demonstrate the impact of your involvement.
We will listen to your ideas, views and comments with an open mind. We will be transparent with you, explaining why decisions have been made, whether there are resource limitations that may impact an idea and feedback on the results of pieces of work contributed to.
We will ensure meetings are accessible (virtually and face to face) and offer support to you to ensure you can participate in the meetings/projects. We will also provide all reasonable expenses for any face-to-face meetings required and reimburse these promptly.
If you are interested in this opportunity and would like an informal chat about it, please contact Helen Liles, our Head of Service Development by emailing info@anaphylaxis.org.uk
To apply to join the Group, please complete the on-line application form. We will be keeping the application process open, but we are expecting a lot of interest, so please do apply as soon as you can. We will then contact individuals for a short, informal interview. If we receive more applications than we currently have space for, we will start a waiting list and bring people on-board when we can.
