The Children and Young People’s Health Outcomes Forum, an “expert group” formed to advise the English governmental agencies on improving heath outcomes for folk from before their birth to 25 years old, held a summit in June and were addressed by a number of young people who had used health services in different ways.
One of those people, Lucy Watts, has taken us up on an offer to speak to an audience of paediatricians, phamacists and others involved in the care of young people through this blog site. She writes:
I would like Paediatricians to know that not all parents that challenge you or disagree with you are neurotic parents, and I think parents should be appreciated and used as an important pool of knowledge: you have the medical training, but they are the experts in their children. They know their patterns, behaviour, routines, diet, and they know when their child is sick. You get the odd neurotic parent, but that doesn’t mean all parents should be treated that way (especially mothers).When a child/teenager becomes sick, and needs care, it’s the parents who step up and fill that role. For example, my mum, who never wanted to be a nurse, has learned so many procedures she could rival any qualified nurse. She’s the one who gives me my medicine, runs round getting medications and supplies, does all the phoning around and chasing up appointments, gets up with me at night, sleeps on my floor when I am poorly, empties my bags round the clock, she does my TPN – something many nurses do not know how to do – as well as IV medication, central line care, PEGs, injections, mixing medications, catheterising, dressing, stoma bags, can catheterise a blocked stoma….many things a parent should never have to do. Some doctors do not appreciate how far a parent goes to keep their child alive, many give up their lives, like my mum has, to keep us alive.
This is hauntingly familiar to me, an oncologist. If we listen, we hear this message from many parents, young people and children, and while we need to balance it with the truth that there is “the odd neurotic parent” the appreciation of how we make people feel while they are seeking explanations for them feeling unwell is very important.
(I appreciate that nearly all the hard work of filtering the non-malignant diagnoses has been done before folk get to me – and that I benefit hugely from this.)
I also know that I fail to recognise the massive effort that families put into caring, often, as I emerge from just 5 days of QDS medication to be delivered.
How do you respond to this piece?
– Bob Phillips