Jubilee Weekend Blogging pt 2 of 3
It's not often that medics welcome patients into their conferences...
It's not often that we're welcomed with very open arms, as partners in our care...
It's not often I almost whoop for joy in a scientific lecture...
Where was I - I was at the Annual Scientific Conference of the British Cardiovascular Society. As a Trustee of the Heart Care Partnership, its always a delight to go along and see how we, the patients, are seen and perceived by the medics and specifically the cardiologists.
There is a worrying trait in some of us congenitals to view the other cardiac patients as bringing on themselves, and getting an easier life than us because of it. It's not a view I've subscribed to, and in simple terms genetics and environment are difficult for anyone to control. I'll also come onto some figures that should make all of us congenital have pause...
But first the HCP - this was that most unusual of things a patient strand at a medical conference, organised and delivered by patients and their representatives. It was held in memory of the first president of the HCP David Geldard, who would've loved the mix of medics and professionals and most especially the patients who lined up to talk to a mixed audience - the days of patients only talking to patients and being talked at by medics are over.
A measure of the importance the BCS places in the patients voice is that the next President of the BCS was the first speaker, highlighting how the relationship between medics and patients has changed, then sessions on the impact that representatives groups can have (and the tightropes they have to walk to be truly representative), how we can be useful in defining and designing studies into our own care. A politician stood up and asked for the medics to support their own points of view - so no back biting, and more importantly no back sliding from the difficult decisions - the examples weren't cardiac care but has resonances for all in the room.
We then looked at the support needed for the voice to be heard, the wider network of family, friends and carers and especially important from the voice itself. Evie is a 15 year old torch carrying with HLHS, and trust me if the medics think I'm a handful, then give her a couple of years! She was confident and articulate way beyond her 15 years, and as I said it is very good to know that some day I'll be able to retire and let her, and others like her, take up the next stage of the fight.
I then leapt sideways into a more technically medical session than you'd normally expect a patient to go to. However, a session on exercise and congenital heart disease couldn't be missed. I've say through a number of these before, and often they've left me depressed and feeling like some sort of freak, not this time. What unfolded had me aghast and giggling...
Let's start with why we shouldn't be complacent about coronary heart disease... over half of us adults with CHD have been shown to be obese, many of us show early signs of coronary heart disease and by all accounts bypass surgery is going to be "interesting" when you've already had structural surgery... That not "interesting" in a good way if anyone was doubting.
Then the guidelines on exercise were dissected, and the lack of evidence they are based on presented. Yes, there is a need for some of us to be more sensible than most, and yes we may never be the fastest, but the evidence for doing something far outweighs the evidence for doing nothing.
There is a revision of the guidance in the pipelines, and it should look something like this: http://www.yorkshirecongenitalhearts.nhs.uk/templates/Page.aspx?id=709
The key for me is this: Many patients are capable of doing more than they think.
We've spent many years being told what we can't do, now its time for us to become the powerful patients and ask why not, our hearts cannot be an excuse for the time bomb of coronary heart disease we may be facing.
So go on, ask your doc what you can do... Don't jump in and try and run marathons, plenty of people without heart conditions have issues going long first time out, but rather find something that you enjoy, that you might not have tried before... If they say no, ask them why, and I hope you get the same supportive answers I've had.
TTFN
Paul
It's not often that we're welcomed with very open arms, as partners in our care...
It's not often I almost whoop for joy in a scientific lecture...
Where was I - I was at the Annual Scientific Conference of the British Cardiovascular Society. As a Trustee of the Heart Care Partnership, its always a delight to go along and see how we, the patients, are seen and perceived by the medics and specifically the cardiologists.
There is a worrying trait in some of us congenitals to view the other cardiac patients as bringing on themselves, and getting an easier life than us because of it. It's not a view I've subscribed to, and in simple terms genetics and environment are difficult for anyone to control. I'll also come onto some figures that should make all of us congenital have pause...
But first the HCP - this was that most unusual of things a patient strand at a medical conference, organised and delivered by patients and their representatives. It was held in memory of the first president of the HCP David Geldard, who would've loved the mix of medics and professionals and most especially the patients who lined up to talk to a mixed audience - the days of patients only talking to patients and being talked at by medics are over.
A measure of the importance the BCS places in the patients voice is that the next President of the BCS was the first speaker, highlighting how the relationship between medics and patients has changed, then sessions on the impact that representatives groups can have (and the tightropes they have to walk to be truly representative), how we can be useful in defining and designing studies into our own care. A politician stood up and asked for the medics to support their own points of view - so no back biting, and more importantly no back sliding from the difficult decisions - the examples weren't cardiac care but has resonances for all in the room.
We then looked at the support needed for the voice to be heard, the wider network of family, friends and carers and especially important from the voice itself. Evie is a 15 year old torch carrying with HLHS, and trust me if the medics think I'm a handful, then give her a couple of years! She was confident and articulate way beyond her 15 years, and as I said it is very good to know that some day I'll be able to retire and let her, and others like her, take up the next stage of the fight.
I then leapt sideways into a more technically medical session than you'd normally expect a patient to go to. However, a session on exercise and congenital heart disease couldn't be missed. I've say through a number of these before, and often they've left me depressed and feeling like some sort of freak, not this time. What unfolded had me aghast and giggling...
Let's start with why we shouldn't be complacent about coronary heart disease... over half of us adults with CHD have been shown to be obese, many of us show early signs of coronary heart disease and by all accounts bypass surgery is going to be "interesting" when you've already had structural surgery... That not "interesting" in a good way if anyone was doubting.
Then the guidelines on exercise were dissected, and the lack of evidence they are based on presented. Yes, there is a need for some of us to be more sensible than most, and yes we may never be the fastest, but the evidence for doing something far outweighs the evidence for doing nothing.
There is a revision of the guidance in the pipelines, and it should look something like this: http://www.yorkshirecongenitalhearts.nhs.uk/templates/Page.aspx?id=709
The key for me is this: Many patients are capable of doing more than they think.
We've spent many years being told what we can't do, now its time for us to become the powerful patients and ask why not, our hearts cannot be an excuse for the time bomb of coronary heart disease we may be facing.
So go on, ask your doc what you can do... Don't jump in and try and run marathons, plenty of people without heart conditions have issues going long first time out, but rather find something that you enjoy, that you might not have tried before... If they say no, ask them why, and I hope you get the same supportive answers I've had.
TTFN
Paul
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