The Importance of Listening

I will never understand why so many professionals don’t listen to the parents of medically complex young people. We hear it all the time, how WE are the experts in OUR children, and yet when it’s most important that we are heard we are more often than not ignored.

During a recent hospital admission for pneumonia, we encountered more than the usual level of ignorance from certain professionals involved in the Dude’s care. From small issues such as deeming it unnecessary to splint his hand/wrist to protect a cannula despite us almost begging them to do so (due to uncontrolled movements and seizures said cannula didn’t even last 24 hours) to much more serious ones including disregarding his symptom management plan, we were left feeling frantic with anxiety as we had to watch our incredible son endure additional painful procedures and become far sicker than he should have been. All of which could and should have been avoided, had his parents been listened to.

The saddest part of all this is that our boy has the most incredible palliative care team who work tirelessly for him and the other children and young people under their care.

His consultant has known him since he was 14 weeks old and is one of the reasons why he is as healthy and happy as he is today.

By working with us as his parents and all the other healthcare professionals involved in his care, she put together a symptom management plan to detail essential information clinicians need to know in order to manage his care on admission to hospital.

A phenomenal amount of work and effort goes into keeping this remarkable young man healthy and well, and as his parents we are indeed the experts in his condition and in how best to manage his various issues.

It is a depressing fact that many parents of medically complex children will experience the same desperation that we did, as they try to make the Dr or other professional listen to them while seeing their eyes glaze over.

As a result of not listening to us, the Dude ended up far sicker than he should have been – then in turn led to a prolonged hospital stay, costing the NHS thousands. A mistake as simple as putting him on IV fluids as a first option when his plan specified that this should be avoided led to exceptional worsening of his seizures at a time when he was already seriously ill. Something that could, and should, have been avoided.

Loving these incredible children is easy; fighting for them is a privilege. However, we would appreciate not having additional trauma heaped on by having to battle to be listened to by the very people who are supposed to be there to help.