We are currently promoting a survey which aims to discover how we can improve our resources and services for everyone. We also want to find out about the quality of life our patients experience, and how our services impact on this. In this week’s blog we explain why we are doing this survey, and why your feedback is so important to us.

Fill in the survey.

Reaching Communities

In 2012 we received a grant from the Big Lottery Fund (BLF) for a Reaching Communities project. We are now halfway through this 5 year project, and we want to find out how our work is impacting on our service users. The aims of the project are to improve patient welfare through a range of communication resources, and improved information provision.

Much of this has been conducted through online platforms; not just social media such as Facebook and Twitter, but through specific online patient communities such as RareConnect and PatientsLikeMe. However, a huge portion of the project has also focused on offline resources, such as the creation of our face to face patient workshops, and our paper newsletters.

All of this aims to provide information to patients and their families, and to bring them together to prevent isolation. We believe this support and community can improve welfare for everyone.

Not Just Patients

The focus is also not just on communication with patients. Our resources are aimed at everyone who needs them- this includes family members of AKU patients, parents of children with AKU, carers, and even healthcare professionals. We want to raise awareness and support all of these groups, so they can effectively support patients.

Part of our project has even focused specifically on educating healthcare professionals about AKU. This is both to increase rates of diagnosis, and to improve local care for AKU patients. We have recently created a professional online learning module in partnership with the Royal College of General Practitioners (RCGP) as part of the project.

This module is aimed primarily at GPs, as they are the first contact point for most patients. However, it is free, and open to anyone who wants to learn about AKU. If you want to learn more, or want to give the information to your GP, you can find the module here.

Your Feedback

Your feedback is so important to us, because these services are for YOU! We want to know what you do like, but also what you don’t. This is the only way we can ensure our services fit your needs. Whether you are a patient, a family member, a carer, or a healthcare professional, we want to hear from you.

Please fill out our survey here.

It will only take up to 20 minutes of your time, and your information will go a long way to improving the resources we provide. As well as using the data we get back to improve our services, and report on our progress to the BLF, we will also be writing an impact report so you can see the results, and get an idea of the impact we are having.

If you have any questions, please get in touch with Sorsha at so****@ak********.org