Dear Mr Hunt

Dear Mr Hunt,

 I see that you've called out consultants for having a lack of vocation and professionalism. I want to tell you why this annoys me so much and no it's not because I know that inevitably you will also target nurses at some point. 

I've grown up having a lot of involvement from NHS health professionals and sure there are many many ways the NHS could be improved including 7 day service. In fact I've sat in those elective meetings about how to do this alongside health professionals 2 days before Christmas. It's far from perfect but I want to tell you about the consultants I grew up with (all of whom worked on this 'unfair' contract).

I want to tell you about the consultant who was on call 24/7 because he was the only specialist in the hospital. The same consultant who came into hospital in 15 minutes when I was admitted on a Saturday morning. He was on his day off , although he did regularly work weekends and nights, and about to go on a day out with his family. Instead he spent it , more than likely unpaid, treating me and didn't complain about it once.  The same consultant who spent his annual leave time on holidays for kids with diabetes and no he's not an exception.  I know many Dr's and other health professionals who do similar with diabetes camps or camps such as overthewall. 

Or the consultant who works across 3 hospitals and fits us in even when we don't have appointments. clinics run late because he never rushes a patient. If we need an extra 10 minutes we get it and the majority of patients understand that because if they have an issue they get seen or they take a bit longer.The same consultant who fought to get us a decent diabetes service with a specialist nurse. The consultant who once spent 3 hours teaching me all my diabetes education again. Even when he goes home he phones to check on the newly diagnosed patients. Oh and he also works weekends. 

I want to tell you about when I was 15 and  broke my back. It was 11 am on a Saturday and funnily I was seen by a consultant and I also got an x-ray and CT scan which seems implausible if you believe Mr Goves story in the telegraph earlier this week. Unfortunately , due to no fault of the medical team, I deteriorated over night. At 8 am on a Sunday I was transferred to what was effectively HDU. I had 8 paediatric Drs and nurses in that room with me including consultants. Not only providing excellent medical care but a senior Dr was there holding my hand to calm me down too. Not only that but that afternoon was seen on the ward round by the orthopaedic consultant and was seen daily by them as well as the paediatric team.

I want to tell you about the time I sat in a room full of 200 health professionals specialised in diabetes and how passionate and engaged they were at improving care. They spent 3 days of what was either study leave or possibly annual leave to spend hundreds of pounds to be at this conference purely to make themselves better doctors , nurses etc and to ensure they give the best care to their patients. They also spend hundreds of pounds of their own money to sit their exams on top of mountains of student debt from university.

Not to mention the doctors I'm incredibly lucky to work with and learn from. The consultants who are regularly on at the weekend. The consultants who provide world class care.

Although all of these people could be paid far far better in other countries and treated a lot better too. They stay. They stay because of their patients. They stay because they care. I owe my life to them. So don't ever tell me that doctors have lost their sense of vocation or professionalism. Especially not as you take a 7 week holiday and a 10% pay rise.

apparently I hate myself

so a few days ago I came across this article

if you don't want to bother reading it and believe me it's a waste of a few minutes. It's basically summed up as I got hypothyroidism , pernicious anaemia and type 1 diabetes because I hated myself. Oh, and you can spot 'autoimmune types' by 'They have an intensity about them, a desire to impress. They’re always the ones at the front of my lectures, frantically taking notes. They have an air of ‘I'm not good enough as I am’.' 

Should I show you what I looked like at my type 1 diagnosis? 

I was a baby. I certainly wasn't looking to impress anyone clearly nor was I overly ambitious. Think my greatest ambition at that point was how much ice cream I could get in my mouth and I didn't even have the capacity to hate myself. 

Stress obviously plays a part in how I manage my conditions and it can make them more difficult to manage but its so dangerous and utterly stupid to suggest that self loathing is what causes them. If the worlds top researchers have still not figured out the cause for a condition that was first described in the ancient Egyptian period then a self professed 'healer to the stars' with absolutely no evidence to back the claims up  hasn't either. 

It genuinely annoys me that people who could raise awareness of these conditions thanks to their 'celebrity status' (and in her case I use that term loosely)  instead use them as a way to promote their latest diet (no sugar is hers , another article was a vegan diet) and utterly dangerous ideas. No the majority of us were not sitting there agreeing with you. We were absolutely disgusted and appalled that you trivialised such devastating conditions and laid the blame firmly at the doors of people who could do nothing to prevent it.

diabetes week - research

i thought i'd write a bit about how research has helped me in honour of diabetes week. As most of my readers know i was diagnosed as a type 1 diabetic at the age of 2 in 1997. I was diagnosed before the basal insulins lantus (approved in 2000) and levemir (2004 from what i could find) had even been invented. I was on the free mixing regime with syringes but i was lucky to even have insulin thanks to the work and research of  many many scientists who spent much of the late 19th and early 20th century studying diabetes mellitus. Paul Langerhans found the islets of langerhans in 1869 , the cells that produced insulin but it wasn't until in 1901 Eugene Lindsay Opie discovered a clear link between the pancreas and blood glucose regulation then 20 years after this Banting , inspired by the work of Opie amongst others,  and Charles Best extracted and purified insulin as a medication. This was the fate of children diagnosed with diabetes before 1921... 

At best a child would survive a year on the starvation diet. it was inevitable the child would die from it. There is a remarkable story of when insulin was first discovered children diagnosed with diabetes were kept on wards of up to 50 most of them comatose and families waiting for their child to die, when insulin was first purified and extracted Banting, Best and Collip went round injecting children with the insulin as they got to the last children the first were waking up from a coma. this was the same child in the previous picture after insulin treatment.

Thanks to researchers our means of testing bloodsugar has gone from testing sugar by boiling urine and adding a few chemical and measuring it  against a colour chart, to urine strips to the 1990s when home bloodglucose meters became widespread that often took a minute or so to read which is the meters i started on , to the meters now that can work out your dose, remember carbs , insulin & bg and meters that bluetooth to pump or connect to smartphones.

our means of injecting insulin has gone from glass syringes where the needles had to be sharpened manually to disposable syringes to pens such as the novopen echo which remember doses.

even the method of insulin has changed from using animal extracts to using dna and bacteria which are able to be altered more to create the long acting or the rapid acting insulins.

pumps have gone from this in 1978- 

            

to this in 2012... pumps which give minute doses of insulin mimicking the pancreas. pumps that bluetooth. pumps that have lists of carbs and you just click on the food you're having and it works out doses. pumps that are waterproof. pumps that change lives. 

and this is what  pumps will hopefully do in the future.... https://www.myglu.org/articles/day_1_bionic_pancreas_study

a bionic pancreas is my hope eventually. Even if it means being connected to multiple infusion sets the bionic pancreas which is already in human trials will take away all the worry that we currently experience. the freedom of not having to plan ahead, not having to worry about hypos or hypers and not experiencing the symptoms and long term complications of these is something i can only dream about at the present time.

i have been lucky enough to hear the Diabetes uk head of research talk twice now. they spend £6,000,000 annually on diabetes research pretty much half and half on type 1 and type 2 . They were heavily involved in the invention of insulin pens. So to them, to JDRF to every scientist and health professional who are or were involved in research from the bottom of my heart, thank you! 

research gives me:

So a conversation on twitter sparked this blog post and its about should gp's treat all diabetes?

The conversation was triggered by Partha's blog post in which he recalled a meeting where gp's said they could treat all kinds of diabetes that 'there was no need for a diabetes base in hospital'. It kind of reminded me of this photo...

In my opinion we should be playing to the strengths of the GP and of the specialist. I want to start off by saying i like both my GP and my consultant. My GP has been my family's GP for over 30 years and mine for 18 years, he was the one who diagnosed my diabetes straight away. He's a great GP and oversees the management of all my chronic conditions and regularly asks how my diabetes is and is the one who thought outside the box and put me on the mini pill to stop the havoc my bg was going through monthly but he doesn't know the intricacies of dealing with type 1 especially a type 1 on the pump.

I'll give you one example of why i refuse to let my GP treat my diabetes and I why I hate QOF. Last December i got a phone call telling me to come into my GP. When i got there it was to be told my hba1c was 'very high' at 8.5 % and I had protein in my urine and he thought I should go on ACE inhibitors because of the protein and my blood pressure which was 120/80. My hba1c was actually that high cause I had hypounawareness and all 4 members of my team had said the priority was to get that back, when I'm the only type 1 in the practice my GP mainly deals with type 2's who would never really have the severe hypos i was having which were often 3 or 4 a day and in the ones. Plus it was Christmas and whose hba1c doesn't go a little higher at that time!  My consultant figured out the protein just by looking at the time it was taken which was just after a meal... it turns out it was a false positive and all 3 of my next tests came back as trace and also because my consultant is able to spend a lot more time with me than my GP does he knows how stressed i get by appointments which explains the slightly raised bp. 

I doubt my GP could give me the time i need in appointments to manage my diabetes or have the knowledge to figure out these bg...

or look at this graph and figure out whether i need to increase lunch ratio and decrease tea ratio or increase basal mid afternoon and reduce it in the evening where there's been a few hypos or were the hypos caused by chasing numbers in the afternoon or do i need a slight increase across the board to bring the average of 8 down slightly to get my hba1c below the 7.5 without causing too many hypos.

This is where my consultant and dsn come in. People who are trained specifically in type 1 diabetes who have years of experience (think they'll both kill me if I say how much...) and help me make the adjustments to achieve optimal control. Lets play to that strength of knowing type 1 and its regimes and equipment inside out. They know my case , they know me and they can give me the extra time I need to manage my condition which at the moment is fortnightly appointments with the nurse and monthly contacts with the consultant because lets face it :

and leave the GP to do what he does best for me overseeing all my treatment and diagnosing and treating the minor illnesses i have and leaves him free to deal with other patients who would get a lot more out of appointments than i would and who need the appointment a lot more than i do. This is why i refuse to do GP appointments about my diabetes cause it is a waste of their time and its a waste of mine.

guest post hawmc

“Face of my Disease”

Introduce my condition. Picture. My relationship with my health and condition. Few interesting facts about myself as a person AND as a patient

I’m sat in a local coffee shop, writing. I do this quite often, and it strikes me how much of a creature of habit I’ve become. How easily things have become to get used to.

It never used to be like this. Having an incurable, invisible illness changes you, it must, I believe. I haven’t always been since, nor have I always had my condition; in fact it’s only about 18 months old.

I have Crohn’s Disease, an Inflammatory Bowel Disease (IBD) which is a long term condition that inflammation of the lining of the digestive system; from mouth to anus. Common symptoms are diarrhoea, fatigue, abdominal pain and weight loss. Other symptoms (extra gastrointestinal) range from mouth ulcers, joint pain, eye infections and skin complaints. Crohn’s can affect any part of the digestive tract and can spread. Notice here that Ultraitive Colitis (UC, another IBD) is located to only the large bowel; Crohn’s can be more extensive and aggressive.

Luckily, for me so far, I’ve yet to see my Crohn’s spread further than it was when first diagnosed in Sept 2011. Despite being only located in my colon, my disease rapidly went from mild to severe within a couple months, meaning my medication doses and strength grew exponentially somewhat overnight. My last medication was a subcutaneous injection called Humira; an Anti TNF drug that helped control and vastly reduce the (then chronic) inflammation I had. I finished that in the New Year and have been on courses of Predniosolone (steroids) since to control the lingering inflammation.

Eight times out of ten, I manage my condition extremely well and am able to go to work and maintain a good lifestyle, despite my dietary restrictions. Acceptance of my condition was an extremely fraught process which took me into counselling to help me through the worst of it. I write my blog to help deal with the depression and anger I feel (and felt) as part of my diagnosis. I’m 24 and feel about 70 some days when my subsequent joint complain flares up. But I still keep going.

Despite the anger and depression, I would classify myself as a good patient. I have yet to refuse or dismiss a treatment course my GI (Gastroenterologist) advised me to take, or fail to turn up for a test or procedure. I trust my GI to do what is in my best interest, what is best for my disease at that point in time. I would rather try and fail at a medication that be too scared to take it. At some point, you have to live and let live, trust your doctor to treat you the best way they can.

I am a graduate but stuck in an unqualified job because my health problems have and still limit my body to move onwards. But, I am working. I am glad of my job for the most part; it keeps me sane when I need rescuing from the crap that my condition throws at me, at periodically inconvenient times. But I keep going.

I keep going.

If my condition has taught me anything, it is to know it will always get better. You might have to go through some pain and question life and yourself before you get there, but you will get better. Having some faith in another person to take care of you is important. As we go on with our conditions, as they grow and get older and we get more comfortable with them, as we learn more about them, we take back some of the control they have over us. It is a battle, I won’t lie, but it such a rewarding feeling knowing you are fighting against it and winning. And you will, you will win at some point down the line. Keep hold of that. 

sharing resources...

todays prompt was create a care page..

my best list of resources for newly diagnosed type 1...

your hospital team - they are often a great starting point and know how to get involved with different things

local support groups and type 1s - hospitals can often put you in touch with support group or other type 1 or parents of type 1s

facebook - circle d
               the insulin gang
               type 1 diabetes fact and information
               type 1 diabetes memes

twitter - #doc                       @ninjabetic1 @txtingmypancreas @annieastle @oceantragic
            #dblog                     @anniecoops @parthaskar @sweetercherise @sowerbee
            #dailydtalk                @ali_may_twit @clarentina @sixuntilme @sarahkaye128
            #ozdoc
            #dsma

other sites - diabetes.org.uk
                  jdrf.org.uk

day 2 of wego health

time for introductions:

i'm 17 , a college student soon to be student nurse in september. I also happen to have several invisible illnesses. From the outside you would see a healthy seventeen year old , unless you notice my insulin pump, you couldn't tell my body is seriously screwed up. So to introduce my health conditions-

Asthma

I have had asthma since i was very young, if i'm honest it is quite mild and its very predictable as to what triggers me and very rarely gets out of control. I'm pretty bad at taking my medication for this which is a preventer inhaler twice a day and then the blue inhaler when i have asthma attacks, i probably should be better since my peak flow is around 100 below what is expected of a girl of my age

 (asthma.org.uk)

Raynauds

basically means my blood vessels in my feet don't work properly and in cold or when my bloodcount is high they often turn black. Really annoying when i want to wear open shoes in the winter and can't! 

Hypothyroidism

so as well as killing off my pancreas, at around the age of 10 my immune system killed off my thyroid as well. although it has made a valiant attempt to do some work for the past 7 years i now take 125 mcg of thyroxine every morning to replace the hormones i've lost. When my hypothyroidism flares up i will become extremely tired to the point i will easily sleep 15 hours a day and i get terrible headaches and start losing my hair

Type 1 Diabetes

This is the biggie for me. type 1 is an autoimmune condition which means instead of attacking viruses etc like the immune system is supposed to, my immune system produced antibodies against my beta cells which produce insulin. Insulin is essential to survive so since the age of 2 i've had to take some form of insulin every day whether that be through syringes, injections or now through an insulin pump. That doesn't mean my diabetes has got worse , just the way we manage it has got better. There is no clear reason why the immune system attacks the pancreas, milk antibodies, lack of vitamin D or the coxsackie virus are among many of the theories. The things we know about the reason though - It isn't caused by eating too much sugar and It isn't caused by being overweight. We also Type 1 can not be cured (neither can type 2 diabetes for that matter) , we will be insulin dependent for life and will never be able to come off it, We can eat sweets and chocolate we just adjust insulin for it, yes its tough, yes there are days i absolutely hate it but it won't ever stop me. 

a day in my life with type 1 diabetes and this was a pretty good day i can have days where im anywhere from 1.7 (30 mg) to 30 (540) mg)-

wake up at 3 am and don't feel right extremely thirsty my bloodcount is 18.3 (329 mg). i went to bed the previous night at 6.7 (120) and had no food. by all logic it should stay steady. I do a correction dose of 1 u to 3 mmol to get it down below 10 i do 3 u through my pump

by the time i wake up at 9 am my bloodcount is 7.0 (126 mg), Hannah 1 Diabetes 1 . i then go take a bath do a small amount of insulin to cover being disconnected from the pump

bloodcount before lunch - 7.4 (133) big lunch today Mcdonalds a chicken nugget medium meal with diet coke - chicken nuggets 22 g carbs fries 44g carbs plus the sauce which is around 11g carbs so total 75g carbs i do 1 u to every 10g at lunch so do 7.5 u for my meal plus a correction dose of .4 u and extend it over half an hour to cover the fatty content which means the glucose is released slower.

2 hours post lunch my bloodcount is now 10.4(187) , slightly higher than i'd like so as well as a snack of 10g which i do 1 u for i give a correction 1 u to bring me down to 7 mmol (120mg) .

tea time, the correction hasn't worked i'm still at 10.2 (183) i have a meal of chips eggs and beans and 2 slices of bread which works out at 75g carbs (love the days it matches up but i do round to nearest 5 or 10 normally cause i'm lazy), i do 7.5 u for the carbs plus .9 correction as i want to between 7 - 10 for going to bed. i do a multiwave bolus for this over 15 minutes so my insulin matches my food release

i go to bed on a 9.3 (167) . not perfect but it holds steady till morning unlike the previous night.

i could do this day exactly the same all over again and would get completely different results . My ratios often change as does how much basal (background) insulin i need. so there's my type 1 diabetes 101 introduction to my life.