And from a fellow volunteer:
Meet our volunteers: Martin Hills
Martin started volunteering for Retina UK in 2014 after retiring as a Chartered Civil Engineer.
He was diagnosed with retinitis pigmentosa (RP) in 2001 and has an extensive family history, over four generations, of the condition.
Since 2017, he has overseen the day-to-day administration of the email Helpline service and has given more than 1,700 hours of his time to the charity. He monitors and manages helpline emails, triages them to the most appropriate team member, as well responding to many himself.
He has dealt with numerous different questions over the years, from people all over the country. He describes volunteering for the charity as ‘very rewarding’ and highlights one case which for him was particularly memorable.
“We received a message from someone who couldn’t talk to any of their family members about RP at all, because they were scared to do so and they didn’t think their family wanted to know about it. This person was really desperate to go abroad for what I considered to be a questionable treatment. We had many, many interesting conversations about that!”
The retired Chartered Civil Engineer creates reports to inform common subject areas, identifies training needs and keeps a record of feedback from service users to enable Retina UK to continuously improve the service and demonstrate impact.
Martin has also shared his lived experiences as a key member of the Patient Advisory Committee for a biotechnology company, giving up significant time to help guide the company’s patient information development and clinical trial design, and to ensure that they understood the needs of those living with inherited retinal conditions. He spoke about this at the Retina UK Annual Conference in 2023, helping our community to understand the value of engagement with industry and researchers. The recording of this can be found on our website: RetinaUK.org.uk/resource/annual-conference-2023/.
He has spent time completing detailed surveys about the impact of his sight loss condition, in order to support a Genetic Alliance submission to the HFEA pre-implantation genetic testing licensing committee. He also encouraged members of his wider family to complete the surveys.
His top tech tip is the good old-fashioned torch! He carries a small (but powerful) torch with him and uses it in dim light: “I can’t begin to tell you how useful that is.”
A few words from our community:
“I just wanted to thank you so so much for your reply. It is so appreciated, the time and effort you put in to your email and all the information, I can’t thank you enough.”
“Omg that is so helpful. Thank you so much.”
“Thank you very much Martin for your detailed reply, there’s a lot of extremely useful information there for us to pursue. With many thanks for your help, and all the best.”
“Special thanks to Martin for his regular phone calls, his encouragement and his humour, this really makes me feel part of the Retina UK family.”
To express an interest in future volunteering opportunities with Retina UK email volunteering@RetinaUK.org.uk.
Martin also talks about his experience of genetic testing and counselling.