Discover Wellbeing FAQs


What is wellbeing?

Wellbeing is how comfortable, happy and healthy we are. Our life experiences can impact on our wellbeing.

Who are Retina UK?

Retina UK the only UK charity* dedicated solely to working for people affected by inherited sight loss. By stimulating and funding medical research, we increase the understanding of these conditions and accelerate the search for treatments for the future. The information and support we provide helps people lead better lives, today.

*CIO, registered charity number 1153851

Why did you develop this course?

In 2019 more than 900 of our community completed Retina UK’s Sight Loss Survey. Some 92% of people said they had experienced emotional or psychological impacts. Our response was to create Discover Wellbeing.

When we repeated our survey in 2022 93% had experienced emotional or psychological impacts.

We want to help those living with inherited sight loss to develop an awareness of emotional wellbeing and the practical skills to actively cope with life’s ups and downs.

Who was involved in developing the course?

We developed the course in partnership with Arthur Ellis, a mental health and wellbeing organisation.

We are also grateful for the support of:

The many members of our community who took part in our focus groups to ensure the videos are shaped by lived experiences, and also those who were involved in accessibility testing.

Dr Mhairi Thurston, a leading expert on the social and emotional impacts of acquired sight loss, who kindly shared her research with us and reviewed the videos. Dr Thurston lives with retinitis pigmentosa.

Freelance IT professional Jonathan Abro, who generously gave his time to support with accessibility testing and advice. Jonathan lives with retinitis pigmentosa.

Do I have to pay to access Discover Wellbeing?

No, the course is free to access.

Why can’t I find the module activity?

All of our activities are accessible word documents that will download directly onto your device or from your browser. If it hasn’t appeared in the window, you will find the downloaded activity in your downloads.

What if I have some technical difficulties?

Even thought we aren’t planning and big changes or updates to the portal, sometimes, technical issues may happen. If you’re struggling to log in, play videos or navigate the portal, please reach out to wellbeing@RetinaUK.org.uk.

I would like some encouragement while I work through the course. Is this possible?

We have trained a number of team members to become Wellbeing Volunteers. They have lived experience of inherited sight loss and their role is to provide encouragement and guide you through the course.

If you would like to be introduced to a Wellbeing Volunteer please email us at wellbeing@RetinaUK.org.uk we will then tell you more about this. You can get support from a volunteer when you start the course, or at any point as you work your way through. 

Please note a supported journey is only available for those who live with, or support those who live with, inherited sight loss conditions.

What does the course entail?

Each course comprises an introduction, pre-course questionnaire, five videos, a number of guided practical exercises and a post-course questionnaire. We suggest you complete one module and the related practical exercises per week, but you can work through the course in your own time. We would encourage you to revisit modules and the supporting activities as often as you wish.

I am a professional supporting someone with inherited sight loss. Is the course relevant for me?

Yes. The course, Supporting Others, specifically aimed at family/friends/colleagues and health and social care professionals. It will explain how you can manage your own wellbeing and encourage the person you are supporting to do the same.

We would also strongly encourage you to share a link to Discover Wellbeing with those living with inherited sight loss that you are in contact with, and those who support them.

How do I get a CPD certificate?

Discover Wellbeing – Supporting Others is accredited by the CPD Standards Office. To request a certificate following successful completion of the course, please email wellbeing@RetinaUK.org.uk

How will you use the personal information I provide?

Some of the information you share with us will be sensitive, such as information about your health. We ask for this to enable us to deliver, monitor and assist with this service. Your personal details will be collected on Retina UK’s behalf by Arthur Ellis. As part of the registration process you will be asked if you are happy for us to process your data.

You can change your consent any time by contacting Retina UK at Wharf House, Stratford Road, Buckingham MK18 1TD, by telephoning 01280 821334 or by emailing Wellbeing@Retinauk.org.uk  Full details on how we use your information can be found in our privacy policy at www.retinauk.org.uk/privacy

Are there other ways I can get support from Retina UK?

There are many other ways we can support you including through our helpline, talk and support service and local peer support group network. We also organise a number of online and face to face events. You can learn more about all of these on our website https://retinauk.org.uk/information-support/

The best way to keep up to date with all of our activities is to sign up to receive our regular newsletters in a format of your choice. To do so https://retinauk.org.uk/keep-in-touch/

Does Retina UK provide a counselling service?

No, Retina UK does not offer a counselling service.

Our helpline and talk and support service are listening services delivered by trained volunteers who have experience of inherited sight loss. They are not counselling services.

To understand if counselling may be beneficial we suggest you contact the RNIB’s Sight Loss Counselling Team https://www.rnib.org.uk/services-we-offer-advice-and-support-services/sight-loss-counselling-team

I/someone I support is really struggling with their mental health and I am concerned for their welfare – who can help?

  • If you or someone else is in danger, call 999 or go to A&E
  • If you need help urgently for your mental health, but it’s not an emergency, get help from NHS 111 online or call 111
  • Contact Samaritans free on 116 123

Did Retina UK receive funding for this project?

Yes, thanks to sponsorship from Janssen and grant funding from Novartis