So my virtual presence tweeting on things health and diabetes related finally got me an invite to something BIG!!
What was this big thing? Well it was the opening of a office in Northern Ireland for the company Hygeia, a company that has created a diabetes management tool called the dNav.
The night of 25th June 2014 saw me in a room with the NI Minister for Health, the NI Chief Medical Officer, a representative of the US Consul in Northern Ireland plus many other top bods in the health sector.
What is dNav? Well its a tool to help people manage their insulin. Yes its a blood meter, yes it allows you to record details of 'events' that may explain why a certain reading was what it was, yes it allows you to input your insulin given and yes it recommends adjustments based on a lot of complicated mathematical stuff where it looks at trends etc - nothing new for a lot of people - but for those using the system they would never give it up.
Its the real stories that say its a benefit - the company will freely admit its not for everyone - diabetes is individual to each and every person - but I got the chance to meet someone, a person with Type 2 diabetes whose hba1c has gone from 9 to 6.1, why? He said the dNav gave him confidence, the dNav gave him guidance, the dNav educated him and the dNav empowered him - a very positive story.
But as I said, the dNav will not work for all, I heard of another person, this time with Type 1 diabetes, who tried it, it got their total insulin dose down from 90 units to 20 units, but it wasn't fully suitable for them individually. What it did prove was that the patient was a candidate for an insulin pump, and that person has now started on that solution.
At present there are over 170 people trialing the dNav - the majority are people who have Type 2 diabetes who treat their condition by insulin - either one injection of lantus daily or a basal bolus regime - people who struggle to adjust their own insulin, people who would like a bit of help.
The Minister for Health put it quite well when he set out the number of people who lose sight, limbs or end up on kidney dialysis as complications associated with their diabetes, and most normally due to poor control, anything that can assist people to be empowered to manage their condition and to show the levels of improvement that were discussed at the event tonight must be encouraged.
I was particularly interested to hear of the work on the next stages of developing the dNav system, areas like allowing the dNav to upload data to a persons Electronic Care Record, either daily or weekly electronically by means of a port, instant benefits for people who may move because of work or marriage - a new team in both General Practice and Hospital Care would have instant access to data showing your trends etc.
There are many tools to empower people to manage their condition, and access to those tools is not always what it needs to be, there will always be a struggle to get what many want; often feel that they need. That fight will go on, but hopefully with the empowerment I saw tonight in people who have benefited from the dNav and hearing from health care professionals on how even it is teaching them things about the condition, one of the glass ceilings has been broken.
I will close using a bit of a story the founder of Hygeia used to explain the system, with a bit of ad lib from myself - 'diabetes is like being on a boat and trying to sail the oceans, its easy to be told sail West that will get you were you are going, but too often you hit currents, bad weather, lack of wind; in those days you need a little bit of help to get back on track, you need a little bit of navigation' Safe journeys.
Showing posts with label type 2. Show all posts
Showing posts with label type 2. Show all posts
Wednesday, 25 June 2014
Sunday, 27 October 2013
Halloween and Diabetes - A Trick or a Treat?
'Halloween is coming and the goose is getting fat;
Please put a penny in the old mans hat,
If you haven't got a penny, a ha'peeny will do
If you haven't got a ha'penny,
then God bless you'
The old rhyme that used to get me sweets (candy's for American readers) when I went out round the neighbours on Halloween night - never heard it? Maybe not, these days its more Trick or Treat.
Is Halloween a Trick or Treat for people with diabetes? For me being diagnosed at 16 meant I had already fully enjoyed the dressing up and knocking on neighbours doors weighed down with nuts, clementines, money and sweets..lets not forget the sweets...! But there are so many children with Type 1 who will do something similar, but won;t be able to do it carefree.
And...do parents struggle with the idea of their wee ones with diabetes heading out on Halloween night and getting gifts of sweets? Ok, we know that we can bolus for sweets, but Halloween night seems to be an explosion of sweetness, including the one thing I haven't had since I was diagnosed and still look at fondly now, toffee apples, i know I could carb count, but that's the fun in just trying a toffee apple gone.
Does Halloween mean a loss of fun for People with Diabetes? I hope not, but it does come with difficulties.
If you are a Type 2, do you buy things in to give the children who will call at your door, but do you buy too much and then the temptation is there in the next few nights to gorge? Or maybe you only give money now, rather than encourage wee ones to grow up with a sweet tooth and maybe a combination of that sweet tooth and a lack of exercise will lead to an eventual Type 2 diagnosis for that happy-go-luck trick or treater.
And lets not forget the excitement that comes with Halloween - the parties, the fireworks, the dressing up - stress and excitement have an impact on blood sugars, and if you're dressing up and happen to have a pump, you have to get a costume that accommodates that, or just sod it, wear it on a clip and let it look out of place? Were do you put your blood sugar meter, what about the emergency hypo supplies...well its Halloween, hopefully there should be plenty of hypo supplies about!
Halloween is for me the start of winter, longer nights, warm fires and staying in..whatever you're doing have a safe one..and enjoy!
Please put a penny in the old mans hat,
If you haven't got a penny, a ha'peeny will do
If you haven't got a ha'penny,
then God bless you'
The old rhyme that used to get me sweets (candy's for American readers) when I went out round the neighbours on Halloween night - never heard it? Maybe not, these days its more Trick or Treat.
Is Halloween a Trick or Treat for people with diabetes? For me being diagnosed at 16 meant I had already fully enjoyed the dressing up and knocking on neighbours doors weighed down with nuts, clementines, money and sweets..lets not forget the sweets...! But there are so many children with Type 1 who will do something similar, but won;t be able to do it carefree.
And...do parents struggle with the idea of their wee ones with diabetes heading out on Halloween night and getting gifts of sweets? Ok, we know that we can bolus for sweets, but Halloween night seems to be an explosion of sweetness, including the one thing I haven't had since I was diagnosed and still look at fondly now, toffee apples, i know I could carb count, but that's the fun in just trying a toffee apple gone.
Does Halloween mean a loss of fun for People with Diabetes? I hope not, but it does come with difficulties.
If you are a Type 2, do you buy things in to give the children who will call at your door, but do you buy too much and then the temptation is there in the next few nights to gorge? Or maybe you only give money now, rather than encourage wee ones to grow up with a sweet tooth and maybe a combination of that sweet tooth and a lack of exercise will lead to an eventual Type 2 diagnosis for that happy-go-luck trick or treater.
And lets not forget the excitement that comes with Halloween - the parties, the fireworks, the dressing up - stress and excitement have an impact on blood sugars, and if you're dressing up and happen to have a pump, you have to get a costume that accommodates that, or just sod it, wear it on a clip and let it look out of place? Were do you put your blood sugar meter, what about the emergency hypo supplies...well its Halloween, hopefully there should be plenty of hypo supplies about!
Halloween is for me the start of winter, longer nights, warm fires and staying in..whatever you're doing have a safe one..and enjoy!
Tuesday, 17 September 2013
The Big Event
The Big Event
Following the great blog post of fellow Diabetes Family member Kev Winchcombe http://circles-of-blue.winchcombe.org/index.php/2013/09/17/diabetes-uks-big-event-2013/ i've been tasked with writing up my own musings of the Diabetes UK Big Event on Saturday the 14th of September 2013.
I have to admit I usually avoid things like this, I know a lot of other people want to connect with other people with diabetes, its not ever been something high up on my agenda, strange given I help run a Support Group in my local area www.north-down-and-ards.diabetesukgroup.org but nonetheless true.
This time I was kinda forced into attendance, as a member of the Council for People living with Diabetes (CPD) our meeting had been moved to the Big Event day, coincidentally there was a need for volunteers on the day...not that i'm a great believer in coincidence...and so it turned out...my fellow CPD members from NI and myself got roped into helping out during the day - i pulled the 'MUG' straw - Morning Guide to the Venue and Room Monitor for two of the sessions.
Beginnings
The day started as a cold one, and alas it turned into a wet one, a hardy band of volunteers stationed at Hammersmith Tube & Bus Station dressed in our 'dress-blues' and maps in hand all ready to guide travellers to the Novotel and start their day at the Big Event off with a little less hassle.
As a worrying sign of what was to come the first person I came across at my guiding point was none other than Richard Lane the President of Diabetes UK, and he was lost, and I got the brunt of a mini-rant, fair play to Richard though as he made a point of finding me in the hotel later that day and apologising for his rant and thanking me and my fellow guides for our work, he'd had lots of positive comments from attendees about how friendly and helpful we had all been.
I have to say the Guide part was really enjoyable, I got to meet lots of really friendly people who were really glad to have someone to point them in the right direction, a great mix of what makes up my Facebook Group https://www.facebook.com/groups/408751785902265/ The Diabetes Family - People with Diabetes of all types, parents, pals, partners and professionals.
Alas one down side to my guiding duties was that I missed my first planned session which was to have been Diabetes Care in Your Area, but a rather cold and wet me much preferred a cup of tea and a wander round the stands warming up to walking in late!
The first session ended at 11.30 and then the enormity of what the Big Event was hit me - a mass of people of every age and character and then a tap on the shoulder and a face with a large smile and a warm handshake - i'd finally got to meet Kev Winchcombe in person!
Midday came round very quick and so I was off to my first session 'Type 1 Research' a smallish room was being used for this session, and it soon became apparent that the room was going to be full to busting, which presented a fellow Council member, Dilys Sheppard, with the unenviable task of turning people away, and alas volunteers in our 'dress-blues' where the first to be evicted, or you could stand, I chose to stay, so more standing it was :(
Research
Type 1 Research - An introduction from Richard Elliott, Research Communications Officer at Diabetes UK highlighted the work that has gone on through Diabetes UK in the past for Type 1 research and a pointer to the charities Research Timeline http://timeline.diabetes.org.uk/ - 1/5th of Diabetes UK's budget is spent on research, though there was also the negative highlight that less than 3% of people are involved in a clinical trial http://www.diabetes.org.uk/Research/Take-part-in-research/
The main talk was then given by Yuk-Fun Liu from Kings College London, she focused on 3 areas -
Stem cell research will always have ethical issues for many, but it is a area which could offer huge potential for the creation of new beta-cells
Immunotherapy is probably the one a lot of people will have heard of through the news of the potential vaccine for Type 1 Diabetes, though in a way it not really a normal vaccine, where the body is given a controlled dose and learns to fight the infection, in the Type 1 vaccine its about training the body to recognise the good and leave it be. The trials here though are very much with the newly diagnosed.
The Question and Answer session through up the usual query on how long - a lot of people used to say the cure will be here in 10 years, in this case it was 20 years.
There was also the question on what about those who have been Type 1 for sometime...and yes there was good news of sorts...the work on Stem Cell and Islet treatment could see cells being implanted back into people with diabetes, but the body will still attack these new cells, Immunotherapy could be the answer to help protect those new cells, and as such there is hope!
My next two sessions saw me being Room Monitor, so forgive me if i get a bit brief here, I was mad mic man for a bit and didn;t really pick up as much as I probably should have!
Discrimination
The first session was 'Discrimination' a very sparsely attended session with only 34 people, we couldn't compete with a repeat session of Type 1 Research or Advanced Pumps and CGM's and that hypo dog!
The session here was led by Gavin Terry from Diabetes UK, and the main speaker was Paul Jennings, a Senior Associate - the focus was on Employment and Diabetes and reasonable adjustments.
One interesting point I got from this session was that no employer should ask you in the application process if you have a disability anymore, this should only be done post recruitment, unless the position in question is one where having a medical condition could be an issue, then an employer can ask.
No employer or service provider should discriminate against someone with diabetes, debate in the room became quite heated on issues such as employers not giving rest breaks for food and checking blood sugars, children being excluded from school as the diabetes trained teacher was off that day.
Paul did his best to field the questions, but he did caveat that each case has its own individual issues, Gavin did point out that Diabetes UK has an Advocacy Service, alas of one poor lady on her own who is very busy, but is contactable and will do her best to help.
Emotions
My last session was Emotional Issues in Type 1 Diabetes, and in contrast to my first Room Monitoring session this was a very different animal, over 130 in the room!
I was a bit headless...and really quite useless chicken in this session, by the time i found who was speaking they'd asked their question - people will not wait for the mic!!
I did pick up the following things - in that room with 130 people a question was asked about how many had access to Psychological Support - and the surprising result was as many as 20 hands went up - the speakers did recognise though that this was nowhere near enough, the cover is patchy and poorly resourced in terms of time.
Think Positive - The brain is like velcro for negative experiences, but teflon like for positive...notice what is good and savour it...every day find 3 things you're thankful for and savour it!
The session was very inter-active and the feedback from others who'd been in the room was very positive, some even saying it was the best session of the day.
Conclusions
So I ended the day tired but happy, would i willingly go to one of these events again if i wasn't being volunteered into it? Honest answer? No i probably wouldn't...but the reason why is more to do with the kind of person I am and my relationship with my diabetes rather than what the event was about....I do my sharing in small groups or on-line....one thing I left out from the research talk above was the fact that not one persons diabetes is the same, each and everyone of us will have our own reaction to it from a physical point of view, but just as much so, each of us will have our own psychological relationship with diabetes, mine is to care of it, but open enough to help others, whilst remaining ME rather than that bloke with diabetes who talks about nothing else :)
Following the great blog post of fellow Diabetes Family member Kev Winchcombe http://circles-of-blue.winchcombe.org/index.php/2013/09/17/diabetes-uks-big-event-2013/ i've been tasked with writing up my own musings of the Diabetes UK Big Event on Saturday the 14th of September 2013.
I have to admit I usually avoid things like this, I know a lot of other people want to connect with other people with diabetes, its not ever been something high up on my agenda, strange given I help run a Support Group in my local area www.north-down-and-ards.diabetesukgroup.org but nonetheless true.
This time I was kinda forced into attendance, as a member of the Council for People living with Diabetes (CPD) our meeting had been moved to the Big Event day, coincidentally there was a need for volunteers on the day...not that i'm a great believer in coincidence...and so it turned out...my fellow CPD members from NI and myself got roped into helping out during the day - i pulled the 'MUG' straw - Morning Guide to the Venue and Room Monitor for two of the sessions.
Beginnings
The day started as a cold one, and alas it turned into a wet one, a hardy band of volunteers stationed at Hammersmith Tube & Bus Station dressed in our 'dress-blues' and maps in hand all ready to guide travellers to the Novotel and start their day at the Big Event off with a little less hassle.
As a worrying sign of what was to come the first person I came across at my guiding point was none other than Richard Lane the President of Diabetes UK, and he was lost, and I got the brunt of a mini-rant, fair play to Richard though as he made a point of finding me in the hotel later that day and apologising for his rant and thanking me and my fellow guides for our work, he'd had lots of positive comments from attendees about how friendly and helpful we had all been.
I have to say the Guide part was really enjoyable, I got to meet lots of really friendly people who were really glad to have someone to point them in the right direction, a great mix of what makes up my Facebook Group https://www.facebook.com/groups/408751785902265/ The Diabetes Family - People with Diabetes of all types, parents, pals, partners and professionals.
Alas one down side to my guiding duties was that I missed my first planned session which was to have been Diabetes Care in Your Area, but a rather cold and wet me much preferred a cup of tea and a wander round the stands warming up to walking in late!
The first session ended at 11.30 and then the enormity of what the Big Event was hit me - a mass of people of every age and character and then a tap on the shoulder and a face with a large smile and a warm handshake - i'd finally got to meet Kev Winchcombe in person!
Midday came round very quick and so I was off to my first session 'Type 1 Research' a smallish room was being used for this session, and it soon became apparent that the room was going to be full to busting, which presented a fellow Council member, Dilys Sheppard, with the unenviable task of turning people away, and alas volunteers in our 'dress-blues' where the first to be evicted, or you could stand, I chose to stay, so more standing it was :(
Research
Type 1 Research - An introduction from Richard Elliott, Research Communications Officer at Diabetes UK highlighted the work that has gone on through Diabetes UK in the past for Type 1 research and a pointer to the charities Research Timeline http://timeline.diabetes.org.uk/ - 1/5th of Diabetes UK's budget is spent on research, though there was also the negative highlight that less than 3% of people are involved in a clinical trial http://www.diabetes.org.uk/Research/Take-part-in-research/
The main talk was then given by Yuk-Fun Liu from Kings College London, she focused on 3 areas -
- Artificial Pancreas
- Stem Cell, and her own area
- Immunotherapy
Stem cell research will always have ethical issues for many, but it is a area which could offer huge potential for the creation of new beta-cells
Immunotherapy is probably the one a lot of people will have heard of through the news of the potential vaccine for Type 1 Diabetes, though in a way it not really a normal vaccine, where the body is given a controlled dose and learns to fight the infection, in the Type 1 vaccine its about training the body to recognise the good and leave it be. The trials here though are very much with the newly diagnosed.
The Question and Answer session through up the usual query on how long - a lot of people used to say the cure will be here in 10 years, in this case it was 20 years.
There was also the question on what about those who have been Type 1 for sometime...and yes there was good news of sorts...the work on Stem Cell and Islet treatment could see cells being implanted back into people with diabetes, but the body will still attack these new cells, Immunotherapy could be the answer to help protect those new cells, and as such there is hope!
My next two sessions saw me being Room Monitor, so forgive me if i get a bit brief here, I was mad mic man for a bit and didn;t really pick up as much as I probably should have!
Discrimination
The first session was 'Discrimination' a very sparsely attended session with only 34 people, we couldn't compete with a repeat session of Type 1 Research or Advanced Pumps and CGM's and that hypo dog!
The session here was led by Gavin Terry from Diabetes UK, and the main speaker was Paul Jennings, a Senior Associate - the focus was on Employment and Diabetes and reasonable adjustments.
One interesting point I got from this session was that no employer should ask you in the application process if you have a disability anymore, this should only be done post recruitment, unless the position in question is one where having a medical condition could be an issue, then an employer can ask.
No employer or service provider should discriminate against someone with diabetes, debate in the room became quite heated on issues such as employers not giving rest breaks for food and checking blood sugars, children being excluded from school as the diabetes trained teacher was off that day.
Paul did his best to field the questions, but he did caveat that each case has its own individual issues, Gavin did point out that Diabetes UK has an Advocacy Service, alas of one poor lady on her own who is very busy, but is contactable and will do her best to help.
Emotions
My last session was Emotional Issues in Type 1 Diabetes, and in contrast to my first Room Monitoring session this was a very different animal, over 130 in the room!
I was a bit headless...and really quite useless chicken in this session, by the time i found who was speaking they'd asked their question - people will not wait for the mic!!
I did pick up the following things - in that room with 130 people a question was asked about how many had access to Psychological Support - and the surprising result was as many as 20 hands went up - the speakers did recognise though that this was nowhere near enough, the cover is patchy and poorly resourced in terms of time.
Think Positive - The brain is like velcro for negative experiences, but teflon like for positive...notice what is good and savour it...every day find 3 things you're thankful for and savour it!
The session was very inter-active and the feedback from others who'd been in the room was very positive, some even saying it was the best session of the day.
Conclusions
So I ended the day tired but happy, would i willingly go to one of these events again if i wasn't being volunteered into it? Honest answer? No i probably wouldn't...but the reason why is more to do with the kind of person I am and my relationship with my diabetes rather than what the event was about....I do my sharing in small groups or on-line....one thing I left out from the research talk above was the fact that not one persons diabetes is the same, each and everyone of us will have our own reaction to it from a physical point of view, but just as much so, each of us will have our own psychological relationship with diabetes, mine is to care of it, but open enough to help others, whilst remaining ME rather than that bloke with diabetes who talks about nothing else :)
Sunday, 19 May 2013
Loss
Been a couple of months since I put some thoughts in a blog, but this thought has been with me since a meeting of my diabetes support group on Monday the 13th of June.
I'd arranged the speaker way back in September 2012, a psychologist member of the clinical team from my local Health Trust, Dr Graham, a very accommodating Dr who was more than willing to engage with patients.
One of the issues for people with diabetes that Dr Graham raised was 'loss' and it really made me stop and think, one of the things diabetes creates is LOSS.
What kind of loss?
Loss of Control? Loss of Freedom? Loss of Life?
Control - Diabetes creates a control culture - we have to learn to control a condition, but on top of that, if you're on med's that control the level of glucose in your blood, well then there's a whole new loss of control you have to learn to live with, and that loss is pretty damn frightening, everyone can experience a low blood sugar, its a natural thing, but no-one without diabetes will experience the impact of hypoglycemia brought about by medication.
A hypoglycemic incident is one of the most terrifying things in the world to experience, more frightening than any roller-coaster ride, you lose all sense of you, in the most severe cases you become useless, you have total loss of control.
Freedom - The treatment of diabetes as a condition has changed remarkably over the years, there is much more chance for those on insulin to live a 'normal' life, but the reality is diabetes will impact on your ability to drive, your employment prospects and even something as simple as going out for dinner, drinks and a night out...its not that you can't...its simply that you have to programme in so many different equations...what will the carbs be in my meal choice?...what if they have no diet mixer for my drink?..what will drinking do to my blood glucose?
Life - Yes, diabetes is that serious...with all the other loss this is the one that those without diabetes don't think will happen..sure its only not eating sugar, diabetes isn't that serious...well sorry no, and excuse the pun...its bloody serious...every day is a challenge...every day is coping with loss and trying to achieve control whilst doing our best to enjoy freedom....and if we don't get the balance right...well then life ends.....
I'd arranged the speaker way back in September 2012, a psychologist member of the clinical team from my local Health Trust, Dr Graham, a very accommodating Dr who was more than willing to engage with patients.
One of the issues for people with diabetes that Dr Graham raised was 'loss' and it really made me stop and think, one of the things diabetes creates is LOSS.
What kind of loss?
Loss of Control? Loss of Freedom? Loss of Life?
Control - Diabetes creates a control culture - we have to learn to control a condition, but on top of that, if you're on med's that control the level of glucose in your blood, well then there's a whole new loss of control you have to learn to live with, and that loss is pretty damn frightening, everyone can experience a low blood sugar, its a natural thing, but no-one without diabetes will experience the impact of hypoglycemia brought about by medication.
A hypoglycemic incident is one of the most terrifying things in the world to experience, more frightening than any roller-coaster ride, you lose all sense of you, in the most severe cases you become useless, you have total loss of control.
Freedom - The treatment of diabetes as a condition has changed remarkably over the years, there is much more chance for those on insulin to live a 'normal' life, but the reality is diabetes will impact on your ability to drive, your employment prospects and even something as simple as going out for dinner, drinks and a night out...its not that you can't...its simply that you have to programme in so many different equations...what will the carbs be in my meal choice?...what if they have no diet mixer for my drink?..what will drinking do to my blood glucose?
Life - Yes, diabetes is that serious...with all the other loss this is the one that those without diabetes don't think will happen..sure its only not eating sugar, diabetes isn't that serious...well sorry no, and excuse the pun...its bloody serious...every day is a challenge...every day is coping with loss and trying to achieve control whilst doing our best to enjoy freedom....and if we don't get the balance right...well then life ends.....
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