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 #doc. Show all posts
Showing posts with label #doc. Show all posts
Wednesday, 25 June 2014
Monday, 5 May 2014
A bit of joined up thinking
It takes an election to get me thinking about politics, and well as at May 2014 there are a number of elections happening.
And as I sit and read electoral manifestos I get to thinking - all these worthy wonderful things that people stand for and against, quite often its against in the hope that Mr/Mrs Voter will be of the same mind.
As someone with diabetes though i've never read a manifesto that would have pushed me to vote one party over another.
A strange and silly thing - sure we as people with diabetes in the UK are meant to be bankrupting the NHS - should something so significant not be up there fully exercising those excellent political minds in policy teams in political party HQ's?
The sad reality is no, and diabetes isn't alone, many other conditions, chronic or otherwise simply don't merit thoughts in policy minds, well until someone decides its time to talk about how expensive this or that drug is, or they want to 'deal' with the nations health.
There will be a little jumping on bandwagon, drum beating and all that, but then the next big hot potato will come into sight, like how much the EU commissioners car costs...ok yes there can be big issues that merit the limelight, but quite often when you have a condition as serious as diabetes its disheartening to see a bit of focus raised and be hot news for what..an hour, a day...and then suddenly its nothing until Mr/Mrs MP or Minister thinks they can make political capital out of us.
I don't want to be your political capital, I want action and I want it now!
And what if they ask the question - what action? Well maybe that's part of the problem, diabetes is so complex could I really say where to start?
Simple and honest answer.....no.....but I do have ideas.....if a condition is 'sooooooooo' serious and is costing 'sooooooo' much, why then is there not centralised thinking about how to manage that condition within the whole country? Its bad enough that devolved administration means Scotland, Wales and Northern Ireland will approach the condition differently, but where it really gets messy is England where neighbouring areas can have different policy.
If you;re going to spend so much money on a condition, why is there no obvious bench-marking of good practice, and if there is, how possible is it for each area to implement it if they aren't given equivalent access to resources - and that's not just money, quite often that can be something as simple as a room in which a Diabetes Specialist Nurse can take someone for a chat.
I'm not asking for the moon, i'm not asking for the stars either, what I want is a little bit of joined up thinking
And as I sit and read electoral manifestos I get to thinking - all these worthy wonderful things that people stand for and against, quite often its against in the hope that Mr/Mrs Voter will be of the same mind.
As someone with diabetes though i've never read a manifesto that would have pushed me to vote one party over another.
A strange and silly thing - sure we as people with diabetes in the UK are meant to be bankrupting the NHS - should something so significant not be up there fully exercising those excellent political minds in policy teams in political party HQ's?
The sad reality is no, and diabetes isn't alone, many other conditions, chronic or otherwise simply don't merit thoughts in policy minds, well until someone decides its time to talk about how expensive this or that drug is, or they want to 'deal' with the nations health.
There will be a little jumping on bandwagon, drum beating and all that, but then the next big hot potato will come into sight, like how much the EU commissioners car costs...ok yes there can be big issues that merit the limelight, but quite often when you have a condition as serious as diabetes its disheartening to see a bit of focus raised and be hot news for what..an hour, a day...and then suddenly its nothing until Mr/Mrs MP or Minister thinks they can make political capital out of us.
I don't want to be your political capital, I want action and I want it now!
And what if they ask the question - what action? Well maybe that's part of the problem, diabetes is so complex could I really say where to start?
Simple and honest answer.....no.....but I do have ideas.....if a condition is 'sooooooooo' serious and is costing 'sooooooo' much, why then is there not centralised thinking about how to manage that condition within the whole country? Its bad enough that devolved administration means Scotland, Wales and Northern Ireland will approach the condition differently, but where it really gets messy is England where neighbouring areas can have different policy.
If you;re going to spend so much money on a condition, why is there no obvious bench-marking of good practice, and if there is, how possible is it for each area to implement it if they aren't given equivalent access to resources - and that's not just money, quite often that can be something as simple as a room in which a Diabetes Specialist Nurse can take someone for a chat.
I'm not asking for the moon, i'm not asking for the stars either, what I want is a little bit of joined up thinking
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 :)
Thursday, 8 August 2013
The Diabetes Family
I'm being either a bit stupid or a bit brave and adding another service into the diabetes online community #doc
I've created a new kid on the #doc
@diabetesfamily on Twitter
&
https://www.facebook.com/groups/408751785902265/ on Facebook
What is the DiabetesFamily?
The 'family' is huge, and can be summarised into five P's
(i) People with Diabetes (PWD) - Type 1, Type 2 or any other kinda variant/name they come up with in the future
(ii) Parents - And this doesn't just cover parents of children with diabetes, those children will become adults one day, but you will still be Mum & Dad, parents will always be concerned about something that impacts on their children, no matter what age the 'child' is.
(iii) Partners - Husband/Wife/Significant Other, Live in Lover, occasional bed partner - people with a close connection with you and hopefully people who care about you a good deal and have their own questions/queries
(iv) Pals - A wide ranging group - includes brothers/sisters, school friends, university friends, flatmates, pub mates any kind of mate
(iv) Professionals - This is Healthcare Professionals, Pharmaceutical firms, charities, other #DOC support groups - the kinda far-off cousin once removed of the family, strange but nonetheless an important member
Like any family there will be disagreements and breakdowns and shouting, but a family is strong because they share things in common and they have a want to be together, most of the time.
I don't plan to compete with the other longer more established #doc support folk, this is just a little something to add to the understanding that although sometimes diabetes can be a very 'me' condition, it should be an 'us', other people have a role to play, and we as people with the condition have to be open enough to let people in.
So if any of this has grabbed your attention and you can be bothered to follow another thing to do with diabetes then please do using the links/profile names above!
I've created a new kid on the #doc
@diabetesfamily on Twitter
&
https://www.facebook.com/groups/408751785902265/ on Facebook
What is the DiabetesFamily?
The 'family' is huge, and can be summarised into five P's
(i) People with Diabetes (PWD) - Type 1, Type 2 or any other kinda variant/name they come up with in the future
(ii) Parents - And this doesn't just cover parents of children with diabetes, those children will become adults one day, but you will still be Mum & Dad, parents will always be concerned about something that impacts on their children, no matter what age the 'child' is.
(iii) Partners - Husband/Wife/Significant Other, Live in Lover, occasional bed partner - people with a close connection with you and hopefully people who care about you a good deal and have their own questions/queries
(iv) Pals - A wide ranging group - includes brothers/sisters, school friends, university friends, flatmates, pub mates any kind of mate
(iv) Professionals - This is Healthcare Professionals, Pharmaceutical firms, charities, other #DOC support groups - the kinda far-off cousin once removed of the family, strange but nonetheless an important member
Like any family there will be disagreements and breakdowns and shouting, but a family is strong because they share things in common and they have a want to be together, most of the time.
I don't plan to compete with the other longer more established #doc support folk, this is just a little something to add to the understanding that although sometimes diabetes can be a very 'me' condition, it should be an 'us', other people have a role to play, and we as people with the condition have to be open enough to let people in.
So if any of this has grabbed your attention and you can be bothered to follow another thing to do with diabetes then please do using the links/profile names above!
Tuesday, 19 February 2013
It's only an MOT
Some comments among the diabetes online community #doc and among friends have prompted me to put into words my feelings of relationships with Healthcare Professionals (HCP's) and how to get the best out of clinic visits.
I'm going to use an analogy stream that helps me when thinking about dealing with HCP's and that is think of it like your relationship with your car mechanic before you take the car for an MOT or service.
It happens only occasionally, they are the experts in their field, but they haven't been driving your car every day for the last year etc.
You and your HCP is not much different. They are the experts in their field, but you are the one who has to live with diabetes 24/7/365.
Your visit to your HCP team should be about checking levels, ticking boxes of targets and measures, you are the one though who day to day has to make sure there is enough fuel in the tank to get you from A to B and you have to wipe the dead flys off the windscreen (take that as my analogy for dealing with high blood sugars - equally harrowing and gross)
HCP's can offer you the benefit of their wisdom, they are the experts, but they really haven't got much right to criticise you when they see you twice a year, their job should be to advise you on new developments, check your still happy with your own control and make sure is there anything that can be done for you to improve your control of YOUR condition.
My personal relationship with my healthcare team is great, not everyone's will be, but a lot of it has to come to down to respect, if we go in to them with an attitude 'that you know nothing' you're not going to change that in a 10 minute appointment - you have to build a relationship, if your HCP team is small enough then you can ask about seeing the same HCP each visit for the next few visits, there should be a willingness to do this, even in a big team. The respect though has to be two way, your HCP has to be willing to give you respect back and accept that you might not have the textbook understanding - but you have the bleeding fingers of finger pricking, the dry mouth of high blood sugar and the panic of a low blood sugar to deal with every day, you have developed your tools for dealing with and identifying these things, YOU KNOW YOUR DIABETES.
I'm going to use an analogy stream that helps me when thinking about dealing with HCP's and that is think of it like your relationship with your car mechanic before you take the car for an MOT or service.
It happens only occasionally, they are the experts in their field, but they haven't been driving your car every day for the last year etc.
You and your HCP is not much different. They are the experts in their field, but you are the one who has to live with diabetes 24/7/365.
Your visit to your HCP team should be about checking levels, ticking boxes of targets and measures, you are the one though who day to day has to make sure there is enough fuel in the tank to get you from A to B and you have to wipe the dead flys off the windscreen (take that as my analogy for dealing with high blood sugars - equally harrowing and gross)
HCP's can offer you the benefit of their wisdom, they are the experts, but they really haven't got much right to criticise you when they see you twice a year, their job should be to advise you on new developments, check your still happy with your own control and make sure is there anything that can be done for you to improve your control of YOUR condition.
My personal relationship with my healthcare team is great, not everyone's will be, but a lot of it has to come to down to respect, if we go in to them with an attitude 'that you know nothing' you're not going to change that in a 10 minute appointment - you have to build a relationship, if your HCP team is small enough then you can ask about seeing the same HCP each visit for the next few visits, there should be a willingness to do this, even in a big team. The respect though has to be two way, your HCP has to be willing to give you respect back and accept that you might not have the textbook understanding - but you have the bleeding fingers of finger pricking, the dry mouth of high blood sugar and the panic of a low blood sugar to deal with every day, you have developed your tools for dealing with and identifying these things, YOU KNOW YOUR DIABETES.
Saturday, 29 December 2012
What do Diabetes UK do?
This is my first go at writing a blog, so please forgive me if its rubbish!
I'm taking this step because of issues raised by several posters on Twitter via the 'diabetes online community' or #doc about the work of Diabetes UK and the recognition of the work of the charity by people who don't have diabetes.
The conception among some is that although 'they' know about Diabetes UK they struggle to see its relevance, feel that its well known in society or feel appreciation for their work.
In some of the posts on Twitter I feel this can be because the comment posters are relatively newly diagnosed and maybe there is still a degree of hurt and resentment that they now have this condition called diabetes; their newness perhaps is clouding them from what Diabetes UK has done for people with diabetes, so my challenge to people is ask yourselves the questions I pose below and replace my answers with your own thoughts -
(i) What did you know about diabetes before you were diagnosed?
I personally can say I knew nothing, ok I knew the stereo-type misconceptions 'oh that's from eating too many sweets', but the reality is I knew nothing and didn't care. There are a lot of comments from posters, again in the #doc, about Type Zero, I might blog about my annoyance at some of the comments posted surrounding that issue in another post.
(ii) What did you know about Diabetes UK before you were diagnosed?
I will draw on my statement from above - I knew nothing, I probably would have seen someone standing raising money, but the reality is I wouldn't have cared who they were, they couldn't do anything for me, but I might have thrown a pound in their bucket just out of the spirit of being charitable.
(iii) What has been your involvement with Diabetes UK post diagnosis?
My involvement started of with simply being a member of the charity, at the time it was still the British Diabetic Association, my relationship with the charity boiled down to receiving correspondence from them about campaigns and getting the Balance magazine, I now had a condition and was now happy to know there was an organisation that was fighting on my behalf, but I wasn't interested in much more than that.
As the years have gone I have become much more involved, I now help to run a support group in my local area, I fund-raise and I campaign on behalf of Diabetes UK and diabetes issues locally, and just recently I became a member of the Council of People Living with Diabetes, a governance council within Diabetes UK designed to ensure that the views of those with diabetes are heard by the charity and are central to their work.
(iv) What has Diabetes UK done for us and what are they doing now?
Quite a wide ranging question and one that maybe Diabetes UK themselves need to consider but I will point out the things I have noticed
I'm taking this step because of issues raised by several posters on Twitter via the 'diabetes online community' or #doc about the work of Diabetes UK and the recognition of the work of the charity by people who don't have diabetes.
The conception among some is that although 'they' know about Diabetes UK they struggle to see its relevance, feel that its well known in society or feel appreciation for their work.
In some of the posts on Twitter I feel this can be because the comment posters are relatively newly diagnosed and maybe there is still a degree of hurt and resentment that they now have this condition called diabetes; their newness perhaps is clouding them from what Diabetes UK has done for people with diabetes, so my challenge to people is ask yourselves the questions I pose below and replace my answers with your own thoughts -
(i) What did you know about diabetes before you were diagnosed?
I personally can say I knew nothing, ok I knew the stereo-type misconceptions 'oh that's from eating too many sweets', but the reality is I knew nothing and didn't care. There are a lot of comments from posters, again in the #doc, about Type Zero, I might blog about my annoyance at some of the comments posted surrounding that issue in another post.
(ii) What did you know about Diabetes UK before you were diagnosed?
I will draw on my statement from above - I knew nothing, I probably would have seen someone standing raising money, but the reality is I wouldn't have cared who they were, they couldn't do anything for me, but I might have thrown a pound in their bucket just out of the spirit of being charitable.
(iii) What has been your involvement with Diabetes UK post diagnosis?
My involvement started of with simply being a member of the charity, at the time it was still the British Diabetic Association, my relationship with the charity boiled down to receiving correspondence from them about campaigns and getting the Balance magazine, I now had a condition and was now happy to know there was an organisation that was fighting on my behalf, but I wasn't interested in much more than that.
As the years have gone I have become much more involved, I now help to run a support group in my local area, I fund-raise and I campaign on behalf of Diabetes UK and diabetes issues locally, and just recently I became a member of the Council of People Living with Diabetes, a governance council within Diabetes UK designed to ensure that the views of those with diabetes are heard by the charity and are central to their work.
(iv) What has Diabetes UK done for us and what are they doing now?
Quite a wide ranging question and one that maybe Diabetes UK themselves need to consider but I will point out the things I have noticed
- Careline - A communication tool for people with diabetes to talk to a real person about concerns they have;
- Voluntary Support Groups - A tool for getting together with people going through the same thing as you, talking issues with someone else who has similar experiences can be a very therapeutic thing;
- Children & Family Support Camps - A vital tool in helping children and families come to terms with what is, and lets not deny it, a life altering condition;
- Raising Awareness - The Measure-Up and 4T's campaigns have got media attention - as diabetics we need to help by promoting these campaigns and taking them to the masses - we follow famous people on Twitter - make use of it - other charities are RT'd all the time;
- Research - Diabetes UK is currently funds of and has funded in the past research into the cause and the search for a cure - without this research we could still be in the dark about so much, we still are, but Diabetes UK is shining a light into that darkness;
- Campaigning - There are too many to list seperately, but people need to give some consideration to what they have access to now and think, how did this come about? A lot of it came about because of the work of Diabetes UK - access to choice of insulin, access to disposable syringes and needles, access to test strips, access to a driving license (although I know this has become an issue - but Diabetes UK in fighting on our behalf)
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