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Lived Experience Expert Group

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 currently not accepting new members, but we invite you to stay informed about future recruitment by subscribing to our newsletter.

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Who are we looking for?

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.

Examples of activities the group might be involved in :
  • right_arrow_orange_icon 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
  • right_arrow_orange_icon Identifying gaps in the provision of information and support and other resources, at different stages of the patient journey/stages of life
  • right_arrow_orange_icon Providing comments and feedback on future plans for the development of information and resources to meet those gaps
  • right_arrow_orange_icon Testing out and reviewing new resources and training
  • right_arrow_orange_icon Further development of a library of “patient/individual stories” for use in fundraising, marketing and communications
  • right_arrow_orange_icon Supporting press or media calls by speaking to the media (training provided)
  • right_arrow_orange_icon Supporting fundraising asks by providing a personal story, either in writing or in person
  • right_arrow_orange_icon Providing lived experience representation on project groups
  • right_arrow_orange_icon Taking part in research, including signposting to research carried out by other organisations

Key Skills and Experience

  • We are looking for parents, carers or adults who would be willing to draw on their personal experience of serious allergy and anaphylaxis, to contribute to the development of the Anaphylaxis UK training programmes, on-line information resources and other support.
  • You will attend and actively participate in the Lived Experience Expert Group and be available for at least four virtual meetings a year (approx. 2 hours each) and have access to a computer with video technology and internet access for these meetings.
  • You will need good communication skills where you can express your ideas and views with other members of the group, and where you can listen to the ideas of others and consider their perspective with an open mind.
  • You will have time outside the meetings to complete any tasks as jointly agreed, this will be done from home and can fit around other commitments and will not be a single block of time.

What you can expect from us...

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.

Application Process

Thank you for your interest in joining our Lived Experience Expert Group. We are currently not accepting new members, but we invite you to stay informed about future recruitment by subscribing to our newsletter. Please watch for updates and future opportunities to contribute to our important work.