Miss Z is back in hospital and it looks like it will be a lengthy admission.
And so, we have become residents of Brisbane’s new, state-of-the-art children’s hospital.
There has been a lot of debate about the design and facilities of this new hospital, and this has got me thinking: what do I want in a children’s hospital?
The top priority, of course, is good doctors, nurses and staff – people who care about your child, work with you as part of a team, listen to your opinions as parents and carers (since we do actually know our children best), as well as providing top notch medical care – in a timely fashion.
But what about the hospital itself, what would the hospital of my dreams look like?
Well, I have a few ideas: Ample and inexpensive parking
Many years ago, when we lived in London and were expecting our first baby, we attended an introductory session at the hospital where we were planning to have the baby. The session included lots of information on childbirth, breastfeeding and gave a tour of the facilities. But the most interest and the most questions were all about parking. Parking seems to be a top concern of most people who have to go into hospital. So why is it often so complicated? Hospital parking is inevitably in short supply and extortionately expensive. The cost of parking is something that boggles my mind. None of us want to be at the hospital – whether it is for an admission or an outpatient appointment. But it isn’t an option; it is a necessity for our child. So then, why the punitive parking charges? I am a big proponent of public transportation, but it simply isn’t feasible for me to bring my medically complex daughter to the hospital by bus (actually, it would take two buses). I might feel a bit better about the costs if the money went to the hospital, but in my experience, the parking facilities are usually run by a separate, private company.
So, in my dream hospital there will be plenty of low cost parking. Close to the hospital and with parking spaces big enough to get kids in and out without denting the neighbouring car in the process. This alone would, I think, take a lot of stress off parents.
I know, this sounds a bit over the top, but hear me out! If you have a baby or young child, or a child with special needs, or a child who requires complex medical care, chances are, you need to stay with them – all the time. It can be really, really difficult to leave them – even for a very brief period of time. I don’t like to leave Miss Z because she is at risk of seizures and aspiration, so needs constant monitoring, and because she is non-verbal, so can’t communicate with the doctors and nurses, and because at 4-years old, it is still a scary experience for her to be left on her own in the hospital. And although there are nurses caring for her while she’s here, they are here for her medical care. Nurses aren’t babysitters. What all this means is that often I miss meals because I need to stay with Miss Z. And I’m not the only one. While missing a meal isn’t the end of the world and is all part of the sacrifice that comes with being a parent, it adds to the pressure of a hospital stay. And while missing one meal may not be a big deal, some parents may not be able to leave at all. Most hospitals have a café - or a selection of food outlets – on the hospital grounds. So it shouldn’t be difficult to arrange a service where you order by phone or online and it is delivered to your child’s room. After all, Chinese restaurants and pizza places have been doing it successfully for years – so why can’t the hospital café? Don’t worry, my dream hospital will deliver to your door, for those times when you aren’t able to leave your child’s bedside.
One of the hardest things about Miss Z receiving nearly all her medical care through the children’s hospital is that it is often impossible to communicate with any of her doctors outside appointments or admissions. The only telephone number offered is the main line to the hospital reception, which then either sends a message to the appropriate person, or transfers you to a department where you are prompted to leave a voicemail message. Now, I understand that if doctors took direct calls from their patients (or patients’ parents) they would spend all day on the phone and never be able to actually see anyone in person. But at the same time, there has to be a better way to communicate. In my dream hospital, there will be receptionists and nurses – real, live people – to take calls, help troubleshoot or navigate the hospital administration when necessary, and pass on messages to specific doctors – and follow up to make sure they respond. Easier communication would make my life so much easier.
Big waiting areas
This one sounds obvious, but we are forever being squashed into over-crowded, noisy, chaotic waiting areas for outpatient appointments. Since Miss Z can be quite sensitive to noise and crowds, this makes the wait excruciating for her. And since she is in a wheelchair, it can also be a logistical nightmare, trying to weave through narrow aisles to find a seat without running over anyone’s toes. My dream hospital will have big waiting areas that are easy to navigate with a wheelchair. It will have an area fitted out with toys and a television for entertainment, bathrooms (wheelchair accessible with facilities to change older children as well as babies) nearby, and padded chairs (not backless wooden benches) to sit on. And since this is my dream hospital, perhaps free coffee and tea-making facilities as well. A few improvements would make long waits outpatient appointments so much better – and easier for all of us to bear.
Music therapy for all
One of the most beautiful experiences I have ever had in the hospital involved a music therapist playing her guitar and singing to Miss Z and her roommate – a boy with similar complex needs. She simply sat in our room and sang a selection of modern popular music – but all of it gentle and calming. The whole atmosphere in the room changed. Both Miss Z and her roommate were still and relaxed, listening to the music. It made me feel quite emotional watching the effect the music had on them both. It provided a few moments of peace in a day when they were otherwise being continually poked, prodded and stabbed with needles. There is little doubt that music can make you feel better. And in my dream hospital, everyone will be given access to music therapy to help them to get through what is otherwise a long, boring and frightening hospital admission.
Appropriate changing facilities
Miss Z is four years old, phenomenally long-legged, and is still in nappies. She is far too tall to fit on a baby changing station anymore, which means it can be a challenge to find somewhere to change her when we are out and about. The Firefly Garden has done a great job of raising awareness of this problem – and encouraging businesses to address it – through its Space for Change campaign. However, I sometimes feel like that same message also needs to get through to our local hospital – where there is only one bathroom with change facilities for older children in the whole of the hospital. This is wrong. The hospital is one of the few places where I expect Miss Z’s needs to be understood and catered for – after all, she is far from the only four year old in nappies that uses the hospital. And we shouldn’t have to hunt and search for the one bathroom in the whole of a 14-floor building where I can change her. So, in my dream hospital ALL the public bathrooms on EVERY floor will have facilities for changing older kids.
Most hospitals caring for children have a vast range of wonderful services and volunteers, offering everything from ‘kangaroo care’ baby cuddling to visiting therapy pets, accessible playgrounds, sensory rooms, services for siblings, and volunteers giving away teddy bears, hand-knit beanies and colouring books and pencils. There also tends to be a range of services for parents of sick children, such as lounges with free WiFi access, quiet spaces for prayer and meditation, and counselling. However, in my experience parents and children – and nurses and staff – often don’t know that many of these services even exist. The hospital of my dreams will have a directory of services, so that everyone can access information on the services that are available to them – and make use of them.
Those are a few features of the hospital of my dreams.
What would your hospital include?
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Does your child still wear nappies? If 'yes' is this to prevent accidents when out of the home environment?