Parents talk about how ECLO opened up the world for their child
Mark Chapman is the ECLO at Luton and Dunstable Hospital. He also runs a family group for Sight Concern Bedfordshire on a monthly basis. Chrissy French is the mother of Scarlett, age eight (as of 2022), who is registered severely sight impaired due to Retinopathy of Prematurity. Since the initial assessment in 2015, they have been seeing Mark in his ECLO capacity at the Hospital and on a regular basis at the family groups and have found his support invaluable. Chrissy describes Mark as being a rock. Over the years he has ensured that they have received all the benefits they’re entitled to, introduced them to a social network, and advised them on the latest technology. Securing all the right benefits to make life easier
“We were first referred to Mark back in 2015, when Scarlett was almost two years old. He carried out a needs-based assessment, he's helped us to secure a whole host of practical things to make our lives easier. Mark is very empathetic and patient – he sat with me and we talked through the diagnosis. As a family we'd never claimed any sort of benefit, so he took me through the process.
Mark ensured that Scarlett was registered severely sight impaired, which was the first step to getting help, by completing all the paperwork to secure the CVI (Certificate of Vision Impairment). He then helped us to secure the blue badge. We had not been aware of the disability benefit that was available, such as Disability Living Allowance - he explained how to apply, which enabled us to get a monthly payment and the Motability payment to get a car. With a Motability vehicle, all the servicing is included, and the car is automatically upgraded every three years.
Play therapy and emotional support
Early on when Scarlett was just a couple of years old, Mark introduced us to the benefits of play therapy. Mark explained how it was important to keep stimulating her existing perception by using light toys.
Providing the latest advice on technology
Technology changes very quickly, but Mark always has the most up-to-date knowledge. Scarlett has an iPhone and recently got a BrailleNote Touch. Now that she’s a bit older, there are certain things that Mark has explained would be good for her to use, and he’s organising a session to talk through the different options.
Mark told us which software we needed to buy - we have Amazon Echo Show and Amazon Echo Dot. There are some helpful features on Alexa for visually impaired people. Scarlett can ask things like; what’s the weather today? do I need an umbrella? And she can check train times on it. There are various things that Scarlett can set up through Alexa, that will be really helpful as she gets older, such as alarms and reminders for appointments.
We've also used RNIB Talking Books. Scarlett has downloaded about 400 audiobooks on an app and is a bit obsessed with Harry Potter!
Helping to create a support network
Mark’s work extends beyond his day-to-day job as an ECLO in clinic and he also runs a family group in collaboration with volunteers from local sight loss charity Sight Concern Bedfordshire which Scarlett absolutely loves. He runs this group on the first Saturday of every month, for visually impaired children at a local church, and Scarlett has met some nice friends there.
The volunteers tend to entertain the kids and then the parents get to catch up over a cup of tea. It feels comforting for me to have developed a bit of a support network, where we can share things, and we’re all connected on social media too.
Taking away the worry and stress
Without Mark’s help, it would have just been extra stress to handle all of the paperwork. It can feel overwhelming when you already have so much going on in your day-to-day life. I have twins, and I had personal stuff to deal with too. So, it was a bit of a godsend just for someone to reassure me and say; “It’s all going to be alright, I'm going to take this away from you, so you don’t have to worry about it”.
Mark has had a very calming influence and as Scarlett says, he’s like part of the family. He helped me to reach that stage of acceptance and realise that there’s a lot of very positive things that can be done, you just need someone to help guide you through it all.”