No Blame Game
It’s very important to understand that I am not here to vilify our healthcare system. Its world class and has saved my daughter’s life on countless occasions and she is kept alive and healthy because she has access to daily meds, oxygen and emergency care at point of need.
We are very lucky. But that doesn’t mean there are not improvements that can be made in practice and the attitudinal culture of hierarchy which sometimes exists.
What Happens when we don’t listen?
In November 2014, I took Hannah to see 6 GP’s over the course of 10 days and was repeatedly turned away with
“It’s just viral, treat with Calpol, return if she gets worse”
So, I did return, repeatedly. It wasn’t until day 10 and GP number 6, that I demanded immediate action. I explained that I am sure it was viral, but it’s not going away and she is worsening. The Doctor (who was lovely by the way) said that although Hannah was clinically fine she would write a letter for her to be seen at A+E if it would make ME feel better.
They checked her temp and it had rocketed to 39.3 so we were immediately taken through. We were explaining to the doctor what had been going on when I notice her hands had gone blue, she went limp and started to seize in my arms.
2 minutes went by, then 3,4,6, by the time we hit 7 minutes they administered Midazolam, but it didn’t work.
She was choking, and I had to run, carrying her in my arms, while 20 weeks pregnant in to resus and handed her over to a team of 20 doctors and nurses. I watched as they cut her clothes off and fought and fought to save my baby girl. I then went in to shock.
Hannah seized for over 40 minutes and aspirated her stomach contents. It didn’t stop until she was ventilated. She spent 5 days on life support and we were unsure if she would pull through or not, and if she did, would there be any neurological impairment further to her already lengthening list of Diagnosis’.
I am forever grateful for that resus team, because of them she is still alive today. Because of their quick action they saved her life. However, they were only able to act so quickly because we were already at the hospital after I had demanded we be seen. It was a team effort.
We all saved her life that day. But I shouldn’t have had to push so hard for it to be taken seriously. She had (RSV Respiratory Syncytial Virus) and a chest infection which should have been picked up on examination before it ever got to the life and death scenario we had just endured.
Had she been prescribed anti-biotics for her chest infection then it could have all been avoided – and would have cost tens of thousands less than the lengthy hospital stay she ended up having. If they had listened properly. That doesn’t even account for the months of counselling and medication I had for PTSD (Post Traumatic Stress Disorder), anxiety and depression following the experiences we had to date.
Acceptance and moving forward
I cannot change our story or our experience. Instead I hope to use it to show how things can be done differently and that by working together we can prevent scenarios like that happening.
Something needs to fundamentally change within our system.
We must raise the bar in terms of how families and professionals work together. We need to leave ego and hierarchy at the door and work together and listen to each other to ensure that carers and those with disabilities are not let down.
We need to invest time in carers, helping them find their confidence to effectively advocate for their children. Encouraging them to not only find their voices but teach them how to harness it and use it effectively to advocate for change and inclusion.
It’s not parents’ vs professionals, its figuring out how we can work together to achieve better outcomes for everyone. It’s about highlighting the benefits of co production to ensure all needs are met. It’s also about health professionals using one of the most useful tools in their arsenal for fighting rare diseases and helping medically complex people. The patients and their families.
All in the same boat
We can’t continue the way we are currently. Health professionals are overworked and overstretched, stressed, tired and at risk of burnout. So are parents and Carers of those with profound and multiple disabilities and rare conditions.
If we work together we can raise the bar beyond what ever seemed conceivable. We are on the precipice of change and the future of person-centred care is still able to be re-written, by listening and having an even playing field with those polished by their profession and those who are experts by daily experience, the possibilities are limitless.
I am an Expert too
The recurring theme from our experiences is painfully clear. I am not being listened too. I don’t have a degree in medicine, I haven’t been a specialist in genetics, paediatrics or emergency care however I spend 24 hours a day, 7 days a week with my child and I know her better than any degree could ever give me.
I am my children’s voice and I am not being heard.
Looking forward not back
I want to make a difference. Not just by raising awareness but I don’t want future families to have to endure the emotional torture that our family did and get to the diagnosis without so much as a
“Sorry, we were wrong. Your child has a genetic condition, we don’t know anything about it, here is a flyer for Unique who can give you more information, your now discharged from genetics”.
Let’s learn to listen to parents, listen to the experts in their own bodies and their own children. Listen to people describing their symptoms and asking for help. Let’s think outside the box rather than take a wait and see approach. Let’s stop allowing parents to question their ability to parent and allow them to advocate on their child’s behalf and be truly heard.
Let’s take a step back and look at the bigger picture and truly place the best interests of these people at the heart of their care. Let’s not keep making the same mistakes of the past and stop an unnecessary roller coaster of misdiagnosis or refusal to diagnose therefore stopping the access to the right medical and emotional support required to allow them to flourish.
Living and Loving “Rare”
If you are a family or patient – I would love if you could become the expert on your condition not only in general terms but what it means for you or your loved one, remember most conditions have a spectrum so they manifest differently in everyone.
Spread the word and teach others what it means to live and love rare. Get involved in your care, make decisions in collaboration with your healthcare providers, join studies, it may not make a drastic change to your own loved one but it will pave the way for those who walk the path behind us.
Have pride in your rare condition, it can be hard when it causes symptoms but our genetics make up who we are. And most importantly remember who you are aside from your condition, our genetic conditions DO NOT define who we are. They are but a small piece of the incredible puzzles that make us each individual and lovely.
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