Duchenne UK’s offer to healthcare professionals – Emily Reuben
CEO Emily Reuben delivered the following speech to healthcare professionals attending the DMD Care UK conference in Leeds on 10th January 2023. She outlined the resources and services we offer to DMD patients and families, so that healthcare professionals can signpost their patients to appropriate support.
“I’m here today to give a brief overview of what Duchenne UK can offer to you to help you support your patients during their Duchenne journey. Because as you all know, many families’ real struggles begin when they leave your consulting room. The struggles at home, with schools, financial pressures and trying to keep living in the face of devastating grief.
And I really hope some of what I highlight will be useful to you. Because what we’ve created over the years is a response to what parents and patients need – because Alex and I are parents, and we’ve translated our lived experience into what we hope is a comprehensive library of support.
Help for newly diagnosed families
When we were diagnosed, we naively assumed that we would be swept up in to a safety net of support. That just didn’t happen. There are nets, but you just need resilience and strength to find them.
At diagnosis – there are a thousand questions: all at a time when you’re least equipped to answer them: I can’t emphasise enough that awful period in time. The helplessness. And the grief. That feeling of being pushed into a bottomless pit of despair, heartbreak and rage. And the feeling that there is no-one there to catch you.
So, the first resource I would like to point you to is our Newly Diagnosed Family Folder.
We spent months developing this. The language has been written to be comprehensible to the average reading age in the UK, which is 9 years old.
It has chapters explaining Duchenne and is packed with practical advice on equipment, adapting your home and outlines what financial support is available to you.
Our education offer
We fund a service through Decipha so that parents can access expert advice on how to get support in schools. It’s run by DMD parents, Nick Catlin and Janet Hoskin.
Empowering patients and families to understand their care
Before we established DMD Care UK, it was a postcode lottery as to what medicines you were prescribed and when. Now we are reaching consensus with expert clinicians and input from patient representatives.
We have developed clear and well laid out booklets explaining what patients need and at what stage of disease progression. It not only helps families to understand their care, but to actively engage with their clinicians and advocate for the best care for their children.
Psychosocial support
Alex and I found it unfathomable that you’re given this news – and then just sent back out into the world and expected to continue functioning. This disease affects not just the child, but the entire family, and sets off a cascade of events that can lead to mental health difficulties and family breakdowns.
This remains a major gap in provision. But we now have two psychiatrists, Dr Rory Conn and Dr Dorothea Bindman – to whom boys with DMD can be referred nationally in certain circumstances.
We are also campaigning to build a prescribing pathway so that parents don’t’ have to fight and navigate with local services to access medicines such as SSRIs for their children.
Guidance in an emergency
A sudden trip to A&E is when parents feel most alone. Having to explain to staff who don’t understand the complexities of Duchenne can be terrifying.
We’ve developed an app on which you can store all your child’s medical information which you can show to clinicians to inform their decisions. Patients have told us the app is a lifeline. Please encourage your patients to download the app.
Helping families to understand research
When your child is diagnosed with DMD, you immediately Google the latest research, and what clinical trials might be available. The amount of information can be confusing and overwhelming.
Duchenne UK provides an outline of the latest research and the projects you can support.
We have also set up the DMD Hub Clinical Trial Finder, where you can discover what trials are available and suitable for you child.
And the Central Recruitment Project database, which allows you to input your child’s details so that trial sites can reach out to you if they are suitable for a clinical trial. The first boy to take part in the latest gene therapy trial in the UK was recruited through this database.
Adolescence and Adulthood folder
Life changes for every parent when their child enters adolescence, but DMD brings additional challenges. That’s why Duchenne UK have launched the DMD Family Folder: Guide to Adolescence and Adulthood to help parents and families navigate their child’s changing needs as they grow up.
As well as information on health and care, the folder provides guidance on life skills, education, work, hobbies and relationships. We encourage families of young people with DMD to help their teenager dream big and make the most out of life’s opportunities.
All these resources are available online and we can send you hard copies. Simply fill out our online request forms or get in touch with [email protected]”