Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Wanted: Personal Assistant
Dear reader, I am comprehensively exhausted. I would dearly love to say that this is because Mr V and I have a fabulous social life, or that as a tweenager the Dude is constantly off out at various social events of his own. Frustratingly, my current state of creaking tiredness is a result of feeling like I am spending an increasingly large amount of time arranging meetings, chasing up training and doing tasks that other professionals should be doing.
I know a lot of this is due to the cuts made to various services over the years; too few staff trying to do too much work is always going to end up leading to problems. After the Dude’s spinal surgery back in October he developed a slight issue with the surgical incision where it simply didn’t heal at the base of the wound. This left him with a 1 inch hole in his back which was a massive infection risk, and needed daily dressing changes. In 2023 our community nursing service was decimated, meaning many of the services that they used to provide and which families like ours relied upon are no longer available. We were lucky if we could get a nurse to come out once a week – so the task fell to us to manage this genuinely terrifying wound in our child’s spine.
We were lucky if we could get a nurse to come out once a week – so the task fell to us to manage this genuinely terrifying wound in our child’s spine.
And then there are the training requirements for carers – the number of forms that need to be filled in and boxes that need to be ticked is truly eye opening! In my adorable offspring’s case, this means that training needs to be provided for his PEG feeding tube, feeding his blended diet down said tube, his seizure management, manual handling, secretion management, VNS use and the list goes on. It would be far too simple if there was a single point of contact for all this, instead each item of training needs to be dealt with by a different professional (in several cases in totally different hospitals). While we have been dealing with all this for years, as we are not healthcare professionals, we are not able to do the training for the carers ourselves despite being the experts in our child’s care.
Parent carers are an impressive bunch, we learn how best to support our children whether that’s by managing medical needs, performing nursing tasks, tube changes, tissue viability issues and the associated admin all while managing family life. It’s a juggling act we don’t always get right, and the occasional spinning plate hits the floor. This month, most of the tasks have gone well… I’m going to take that as a win, pour a glass of wine, and wait for whatever April brings.
