Breaking Down Barriers Lesley Harrison Patient Support Manager

Breaking Down Barriers Lesley Harrison Patient Support Manager AKU Society

Outcomes • To increase patient identification • To increase awareness & understanding of AKU in patients from ethnic minority groups • Better use of AKU Services such, as the National AKU Centre • AKU patients from minority groups feel better supported.

Action Plan • AKU Information We plan to translate information about AKU (including leaflets, patient handbook, dietary advice and other documents) into the 8 most common languages for UK ethnic minority communities. We will also investigate the option of having this information in audio format and website translation.

Action Plan • Survey of AKU Patients We will survey our current patients from hard to reach and ethnic minority groups to ascertain what information they would like about AKU and what might be useful to help raise awareness of the condition amongst these groups. This survey will be carried out either electronically, via post or face to face. The results of this survey will be discussed with patients at face-to-face meeting, and will help direct the course of the latter project.

Action Plan • Face to Face Meetings As a part of the planning process, we will arrange a social meeting/workshop with this group to discuss the survey results, the initial plans for the project and introduce the idea of AKU Champions. By discussing with potential users, we hope to ensure that its objectives meet their demand. Language support for this meeting will be via volunteer translators. Alongside the meeting, we also plan to arrange several home visits to patients who are less able to travel or otherwise unable to meet with the group.

Action Plan • AKU Champions We want to investigate the creation of AKU Champions. These would be patients from minority groups who are willing to work with us to represent their community; with the aim to spread accurate and reliable information about AKU, find and support AKU patients from their own community, and better direct our work to ensure it supports their community well.

Barriers to Progress! Progress has been slow We are not as far on with the project as we hoped. Why? Staff changes. Working group – encouraging participation & identifying suitable date & venue.

What Now? Patient Survey – on going. Given to people as they attend the National AKU centre in Liverpool. Working Group – now incorporated in to biannual AKU Patient Workshop 22 nd November 2017. Leaflet Review – during patient workshop in November, including development of new genetic leaflet. Website – Browsealoud (www. texthelp. com) Progress!

Any Questions ?