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  • Writer's pictureMDS

Ava's Story

When my daughter was diagnosed with type 1 diabetes in December 2019; as a family we found ourselves suddenly thrust into the land of the unknown. We had of course heard of type 1 diabetes; however we did not yet undestand the highly complex nature of this autoimmune disease. We fast tracked our way to becoming experts in our child’s condition overnight; however this certainly would have been much more challenging had we not have had access to the exceptional care and support we received. Due to my daughter being diagnosed not long after her 4th birthday; we were immediately given access to: a PDSN (paediatric diabetes socialist nurse) a dietician; a paediatric diabetic consultant and a child psychologist. Moreover they dedicated a proportion of their time helping us draw up an individual healthcare plan for the school and trained the staff in how to inject ava with insulin and how to monitor her using finger pricks. This was also the case when Ava then transitioned to an insulin pump 18 months later. All of Ava’s prescriptions were drawn up and put in place merely days post diagnosis; would we have received the same level of support & access to diabetic professionals had she have been diagnosed when she 24? Most likely not. And here’s why; As a caregiver to a medically complex child; I often get asked what my biggest fear is as she matures; I have many. One of the biggest however is the lack of support; care and access to diabetic services she will receive as she transitions into young adulthood and beyond. Whilst the future is indeed looking bright for my daughter with regards to advances in type 1 diabetic technology; the same cannot be said for her care when she becomes an adult. Type 1 diabetes services for adults is often poor at best. Lack of face to face consultations and more worryingly there appears to be a huge lack of mental health support. The impact a chronic illness such as diabetes has on someone’s mental health is vast; yet it is rarely discussed at clinic appointments or indeed supported; this has to change. We are very active within the online diabetes community; we see first hand how many of our teenage and adult acquaintances with type 1 diabetes have little to no interaction with their team; or haven’t done since before the pandemic. We should also be mindful of the knock on effect this all has on our NHS. If the support is not there; they can become ill or admitted to hospital with complications relating to their condition; This then puts an exponential strain on an already strained NHS. I do however also appreciate as with the majority of things relating to diabetes care and services this often largely depends on where you live. Some may argue that as an adult living with diabetes they receive excellent care; however this is not across the board; some care in some counties is exceptional; in other counties it is poor. A postcode lottery if you will; there often appears to be a huge disparity in care depending on where you live in the country - this extends to children too. In fact had Ava been diagnosed in the county adjacent to ours she would have instantly been given access to a continuous glucose monitoring device; as it happens due to where we currently live this was not possible and a long battle then ensured to fight for the vital technology she needed and thankfully was eventually awarded. I’m conclusion; All of these factors are a huge concern for any caregiver to a paediatric type 1 diabetic. We are fortunate to currently receive excellent care; however the ultimately question is will this deteriorate as she matures? What will her future look like if access to the vital services she requires and is so used to receiving is sparse or worse still non existent? As we all know; diabetes is a multi faceted condition. It ebbs and flows; there is light and shade; it is not linear; and therein lies one of the many challenges of managing an ever changing condition. Which is why support within this sector is so very vital; regardless of one’s age.

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Victoria picton
Victoria picton
Nov 23, 2023

Wow so sorry you had to go through so much to get the tech she so desperatly needed, such powerful and right up on the future too.

soemthing needs to change drastically doesn't it.

thank you for sharing your story I'm sure all together with our amazing community we can help be the change x

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