How to save a life
Your input into the medical care of your chidren and loved ones can be vital….this is how to get involved
Photo credit Stuart Cooper (https://www.cooper-photography.co.uk/)
A Story of Resilience…and Hope
In 2011 our ten-month old daughter was diagnosed with Leukaemia.
I will never forget the shock and horror of that moment. Suddenly all the worries and concerns that we had as parents paled into insignificance.
We felt helpless and confused. But there wasn’t time to make sense of our new situation.
Our daughter Paige started chemotherapy the very next day and so began 114 weeks of treatment that would severely test her physical and mental strength again and again. It would also test our bonds as a family and transform our outlook on life forever.
However, this isn’t a story of how a small child battled one of the most feared illnesses, as fascinating as that tale might be. This is the story of how my wife Lisa saved our daughter’s life – twice – through her unyielding determination to do whatever she thought was best for her child.
I believe that we all have an important role to play in the clinical decisions that impact our loved ones, yet it can be hard to know and when to play that role. When faced with a serious medical diagnosis, surrounded by experts, bombarded with unfamiliar terms and complicated new information, it’s difficult to know how you fit into the process. But you can…and you must.
Even if you are not a doctor, you have the power to save a life.
If You Are Worried, ACT
We were lucky, we caught the leukaemia early. Many other families are not so fortunate.
To diagnose Leukaemia, you have to look at the blood under a microscope. But doctors need to suspect that there is something wrong before taking blood.
Often there are outward signs of the disease, such as fatigue, dizziness, fever, infections, bruising and swelling. Yet these symptoms are common to many other illnesses, some of them benign. It’s unlikely that the presence of any one of these symptoms in a child will lead a doctor to suspect Leukaemia. This can lead to delays in diagnosis. This problem is not limited to cancer of course.
Tragedies from late diagnosis are not uncommon, in UK and around the world. After all, healthcare systems are often under pressure, doctors and nurses are only human and some illnesses (like ALL) are, thankfully, relatively rare. More importantly, medical professionals are sometimes working with incomplete information.
This is where you come in because, although Healthcare is a made up of a myriad of different parts, I want to focus on the things that are within our control, as parents.
Based on my family’s experiences and advice that we have received from doctors and nurses over the years, I believe that part of the solution lies with all of us taking action at the right time. To help you do that I’ve developed a model.
If your child is ill, or indeed your spouse, or your parent, and you find yourself in hospital with them, remember these 3 words.
ASK. CHALLENGE. TALK.
Firstly, you should ASK as many questions as you need to, in order to make sense of the situation. Ask doctors and nurses to help you understand. Don’t be afraid to be a bother – it’s in their interest that you understand fully what’s going on.
Secondly, don’t be afraid to CHALLENGE decisions if you don’t think they are in the best interests of the patient. Challenge decisions, no matter who made them, from the junior doctor right up to the professor, and get an answer.
Finally, you must TALK. Talk to doctors, nurses, friends, family, charities and even strangers who have been through similar challenges. It’s through talking to other people that we are able to make sense of the situation and cope with the new normal.
If you are worried, ACT.
To diagnose Leukaemia, you have to look at the blood under a microscope. But doctors need to suspect that there is something wrong before taking blood.
Often there are outward signs of the disease, such as fatigue, dizziness, fever, infections, bruising and swelling. Yet these symptoms are common to many other illnesses, some of them benign. It’s unlikely that the presence of any one of these symptoms in a child will lead a doctor to suspect Leukaemia. This can lead to delays in diagnosis. This problem is not limited to cancer of course.
Tragedies from late diagnosis are not uncommon, in UK and around the world. After all, healthcare systems are often under pressure, doctors and nurses are only human and some illnesses (like ALL) are, thankfully, relatively rare. More importantly, medical professionals are sometimes working with incomplete information.
This is where you come in because, although Healthcare is a made up of a myriad of different parts, I want to focus on the things that are within our control, as parents.
Based on my family’s experiences and advice that we have received from doctors and nurses over the years, I believe that part of the solution lies with all of us taking action at the right time. To help you do that I’ve developed a model.
If your child is ill, or indeed your spouse, or your parent, and you find yourself in hospital with them, remember these 3 words.
ASK. CHALLENGE. TALK.
Firstly, you should ASK as many questions as you need to, in order to make sense of the situation. Ask doctors and nurses to help you understand. Don’t be afraid to be a bother – it’s in their interest that you understand fully what’s going on.
Secondly, don’t be afraid to CHALLENGE decisions if you don’t think they are in the best interests of the patient. Challenge decisions, no matter who made them, from the junior doctor right up to the professor, and get an answer.
Finally, you must TALK. Talk to doctors, nurses, friends, family, charities and even strangers who have been through similar challenges. It’s through talking to other people that we are able to make sense of the situation and cope with the new normal.
If you are worried, ACT.
You Are Experts…In Your Children
Being in hospital with a child or loved can be very distressing. You can feel powerless and intimidated. This model is not about heaping more pressure on you at a vulnerable time. It’s about encouraging you to ask the question that’s already on the tip of your tongue. It’s designed to empower those of you who may be hesitant to question people in authority. It’s meant to embolden you to speak up and to be listened to.
I’m not asking you to try and be doctors. Doctors have the training, the qualifications and the experience. They are the experts. Yet you are the ones who see your children day in, day out, so you are also experts….in your children. And you are best placed to spot changes in behaviour that might be symptoms. This is why parental concern is a high priority for doctors when referring a child to hospital for suspected cancer.
It takes the doctor’s skills, combined with our knowledge of the patient’s behaviour, to make an accurate and timely diagnosis.
And maybe, to save a life.
I’m not asking you to try and be doctors. Doctors have the training, the qualifications and the experience. They are the experts. Yet you are the ones who see your children day in, day out, so you are also experts….in your children. And you are best placed to spot changes in behaviour that might be symptoms. This is why parental concern is a high priority for doctors when referring a child to hospital for suspected cancer.
It takes the doctor’s skills, combined with our knowledge of the patient’s behaviour, to make an accurate and timely diagnosis.
And maybe, to save a life.
About
Russell Streeter is a husband and father whose outlook on healthcare has been dramatically shaped by his family’s experience of childhood cancer. He lives with his wife and son in southern England.
The above talk was delivered at TEDx Southampton in October 2021.
Our Heroes
We will be eternally grateful for the care that Paige received from the UK’s National Health Service, particularly at the Piam Brown Ward at the Southampton General Hospital, the children’s ward in Queen Alexandra Hospital and at Great Ormond Street Hospital. We are also grateful for the support we received from CLIC Sargent and other charities. If you can, please support these amazing organisations
Where To Access Support
For more information about Leukaemia and the help and support is available to families living with childhood cancer, here are some helpful websites.
Contact me
Get in touch if you have any questions or feedback about my talk, or you would like me to speak at your event, please get in touch
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