Photo of a boy having his eyes tested by an optometristInterview News 

Spreading the retinoblastoma word

Petra Maxwell is CHECT’s Information and Research Manager; she raises awareness of retinoblastoma among healthcare professionals. She sat down with Kelsey Trevett to answer some questions as to what her job entails, and about working at CHECT…

Q: Firstly, could you briefly summarise your role at CHECT, and what you do?

A: The main part of my role is to raise awareness among healthcare professionals, including health visitors, GPs and opticians, of the symptoms and tests involving retinoblastoma. I also highlight the importance of urgent referrals for children with symptoms of retinoblastoma, including white glow during a red reflex test. Parents will often see these professionals regularly during the first year of parenthood, and are likely to approach them if they notice issues with their child’s eyes.

Q: How do you usually go about raising awareness of Rb among healthcare professionals? What kind of methods do you tend to use?

A: I raise awareness on behalf of CHECT by distributing leaflets, posters and information packs to health centres and GP practices; CHECT members also offer assistance with this distribution. Additionally, Facebook is a great way to raise awareness of retinoblastoma; it enables us to see statistics about the response to our posts, and also allows us to direct people to the CHECT website.

As well as this, we focus our campaigns around Rare Disease Day (end of February), Rb week (May) and Childhood Cancer Awareness Month (September), which also coincides with National Eye Health Week. It’s really important that we use a variety of methods to raise awareness of retinoblastoma and its symptoms, as there is such a huge range of ages and media consumption in the profession.

Q: How aware do you find most healthcare professionals are of retinoblastoma before working with them?

A: Unfortunately, we are unable to carry out a survey to give us conclusive evidence due to lack of funds. However, we do have an initiative called Pathways to Diagnosis, where we speak to parents of children diagnosed with retinoblastoma. We do this annually, to find out about their journeys to diagnosis, and their experience with the healthcare professionals they spoke to. Since 2012, we have spoken to 200 families, which enables us to see the knowledge and attitudes of healthcare professionals in the field.

Q: What aspects of your job do you find the most enjoyable and/or rewarding?

A: I love the variation in my job: one day I can be designing a poster, and the next I can be writing an article for a trade magazine. It’s really satisfying to see an article which has had a lot of work put into it published, continuing to raise awareness for CHECT.

Q: Have you found that attitudes have changed/evolved over time, as awareness has become more widespread?

A: The Pathways to Diagnosis data has allowed us to track professional awareness of Rb, although knowledge and awareness is so varied. The two hospitals which treat children with retinoblastoma — Royal London Hospital and Birmingham Children’s Hospital — have annual meetings to discuss cases throughout the year, and to share findings from their consultants. CHECT are involved in these meetings, allowing us to obtain relevant and up-to-date information.

Q: Do you find that awareness campaigns that are directed at the public, like the partnership with Vision Express, help to raise awareness of retinoblastoma amongs professionals as well?

A: Our partnership with Vision Express has been a huge help in raising awareness of retinoblastoma. Alongside the Ride for Sight and various fundraising campaigns, Vision Express promote our messages to healthcare professionals as well as the general public.

Q: What’s it like working at CHECT in general?

A: I love working for CHECT. We are such a small team, which allows us to be extremely responsive to ideas put forward by others in the office. I also really enjoy our members’ days and weekends, which allow me to meet and speak to families, something I don’t get the opportunity to do very often from within the office.

Q: Do you have any direct contact with healthcare professionals?

A: CHECT runs a focus group, which has members who are GPs, health visitors and opticians, as well as parents and family members of those with retinoblastoma. This focus group allows me to direct my campaigns effectively and receive advice from professionals in the field on how best to reach the most people. This is really helpful in directing my work, making it as widespread and accessible as possible.

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