If you had told me 10 years ago that I would leave my much-loved job to start my own business, I would never have believed you. I loved my job in the NHS so much that I stayed with one hospital for almost 15 years! But life gives you curve balls and you have to step back and take a good look at what it is you really want to do. So, to celebrate The Confident Patient Project turning 6 months old, I thought I would tell you all about why I wanted to start my own independent play specialist practice.
My last role in the NHS was working in radiology and nuclear medicine. We were working to reduce the use of sedation and general anaesthetic in children by supporting them and preparing them through play to complete their scan awake. I would meet my patients about 30minutes before their scan, and in that 30 minutes I would build a rapport with them, prepare them for the scan they were about to have, address any anxieties or worries and then get them on the scanner. I LOVED this part of the role and I do miss it, but again and again the parents would say to me 'I wish we met you 2 months ago!'
Many families told me about how their anxiety stepped up once they received their appointment letter. Now they had a date and found themselves in a sort of limbo. They had a load of questions but didn't know who to ask, they didn't know if, or when, to tell their child about the scan, and what to tell them. They worried about if their fidgety teenager would be able to stay still enough, or if their preschooler would be scared of the scanner. Often parents would tell me about their own, often negative, experience of healthcare procedures. The list goes on and that's just the parents, then there's the child's or young person's fears and worries too. That's a lot to unpack in 30mins!
Many families felt so relieved and supported once they had finished their session with me but felt that they got little to no support while waiting for their appointment. It all felt like it had come too late.
I knew there was something I could do to support those families, and countless others, and so the idea for The Confident Patient Project was born!
At around the same time I became a patient myself. I had reached the ripe old age of 33 and had, amazingly, never really been a patient. But myself and my husband had been trying for a baby for a while and we decided to start IVF.
Wow, that was a journey!
I was lucky enough to be having treatment in the same hospital I worked at. The corridors were corridors I walked everyday, I was very familiar with most of the medical equipment that was used, and I even bumped into my consultant every so often in the canteen! Despite all this familiarity, I had anxieties, of course I did.
How would I feel after my surgery?
How long would this procedure take?
Would it work?
It struck me that if I was so nervous and I knew so much of what was happening to me, how would it feel if it was all new? How would I feel if it was all new and being done to my child? How would I feel if it was all new and I was a child in this big unfamiliar adult world?
I knew that I could use my experience to help others and my passion for starting The Confident Patient Project grew a little more.
Now, we all know how incredible the NHS can be, I had witnessed it every day for the last 15 years. But it wasn’t until we found out that the IVF had worked that I really, truly felt it. I was in awe- we were pregnant!
Looking back now, I’m surprised I wasn’t more anxious but I had the dream first trimester and I absolutely loved being pregnant. All was well until the 20 week scan when we found out the baby had a common complication called Bilateral Hydronephrosis. This is when the kidneys are stretched with too much urine, and in our case was caused by small blockages in the ureters (the pipes between the kidneys and the bladder) meaning that the urine couldn't flow freely. We met with a paediatrician who reassured us that it was common and most cases didn't need any treatment.
In the same scan we were also told about some pregnancy complications, which meant the baby would have to be born early. The pregnancy was very high risk but perhaps that’s a story for another day…
My little happy worry free pregnancy bubble was well and truly popped!
I was suddenly well aware of all the worries and anxieties of what it means to be a parent.
I was full of questions and incredibly lucky to be able to talk to all my radiology and medical friends at work. It dawned on me, again, what it would be like to be a parent who didn't have this medical support network to fall back on, no one to ask questions to or have a little cry with.
Being in the middle of any medical journey can feel so scary and isolating and I thought that there must be more for parents than just searching google long into the night (we've all been there!)
Although distracted by the multiple extra scans and appointments, I couldn't shake the idea that there needs to be more support for families outside of the hospital.
That was probably the longest, scariest winter I have ever experienced but, finally, in mid-January, our baby was born!
Despite being a little early, we were so lucky that my son didn't need any medical support immediately after birth. At 24 hours old he had his first ultrasound scan of his kidneys and he had his first dose of prophylactic antibiotics. His first of over 400 doses as he had antibiotics everyday until just after his first birthday!
After many appointments and scans it was decided that he needed surgery to clear the blockage on one of his ureters. So, at just 5 months old he had his surgery and we spent 5 nights in a specialist children’s hospital.
A few more scans, a couple of annual follow ups and he was discharged from the hospital when he was 3 years old...
When I write it like that, it sounds fairly simple doesn't it? Done and dusted in a handful of appointments and a discharge letter. But the reality is so different. I don't know about you but I felt (still feel?) a constant underlying mild state of anxiety about it. Before we were discharged it was 'What will the scan results be?' and 'will he need another surgery?' and now, nearly two years after we were discharged, I still worry that he will get a urinary tract infection when he brings his water bottle home, still full, after a day of school!
Every story is different. And this is only mine. Before my son was born I had the training and the experience as a professional to support families but my personal experience added a whole new dimension to my work. Now I could relate to some of the things my families were going through. I now knew what it feels like to have your child go floppy in your arms. I now knew what it's like to be separated from them for hours while they are in surgery, and I now knew the utter joy of being reunited.
I know I am biased but the work of health play specialists is so unique and so critical to ensuring that children and young people have a more positive healthcare experience but unfortunately there are just not enough play specialists around the country to support all those that need it and there is very little, to no, independent support. So here I am. I built The Confident Patient Project for you. I built The Confident Patient Project so that you and your child, whatever their age, can walk into their next appointment feeling confident and in control.
Have you worked with a health play specialist? I’d love to hear about your experience, tell me in the comments
Don't mind me while I gush at tiny baby photo's....
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