Type one independence: a cup of tea?

I had a lovely surprise this weekend. My 10 year old brought me a cup of tea he’d made. The “oooh” moment was shortlived. Hot on his heels was my aggrieved five year old, put out she wasn’t allowed to use the kettle yet.

Scalds from hot drinks are a serious business. 16,500 children visit A&E a year due to hot drink scalds and even minor scalds cost the NHS £2.2 million annually, according to Make the Link.

At what point in a child’s life does a kettle transform from a huge risk to something day to day?

A quick review of mumsnet told me that the average age to make a cup of tea independently is 8 or 9. Tea is the stuff of great analogies, so I wondered if it could help with something I have been struggling to explain.

I often get asked “is he independent yet?”

The answer is yes and no. 

I was lucky my son, when diagnosed age 8, immediately started self-administering his multiple daily insulin injections. He performed all his own finger prick tests (around 10 a day) to check his blood glucose. He could identify and treat his own low blood sugar, or “hypos” (all people with well-managed type one diabetes will experience some time below the magic 4 mmol number each week.*). Age 10, he can calculate the amount of carbohydrate in his meals pretty accurately and match his insulin dose, even taking account of the glycaemic index of his food and is starting to think about adapting the dose for planned exercise. (This blog explains this more).

So why does he need support?

Can he, age ten, boil the kettle and make tea? Of course. Is he likely to scald himself? Probably not. Would I be unhappy if I heard Year 5s were boiling water at school without a teacher present or supervising? Probably. And at someone’s house – well, I’d hope the parent was in the room and aware. At 14, I wouldn’t, but I’d expect them to make sure he ran his hand under the cold tap if he did scald himself. Even an adult might need help if they trip carrying the kettle.

My son can give himself insulin unsupervised when at home or at holiday clubs but that would not be appropriate at school yet (for them as much as for him). If on a playdate, he can look after himself, but I’d want a parent to be aware. Even when he is an adult, people around him will need to be aware of the symptoms of severe hypoglycaemia and (to a lesser extent) diabetic ketoacidosis and to be prepared to call for help should the unthinkable happen.

We fund our son’s continuous glucose monitor that links to our phones and alerts him and us BEFORE he goes low so he can often treat to prevent a hypo – he’s boiling a kettle wearing asbestos gloves – but giving insulin (which is lethal in the wrong dose) and treating hypos (life threatening in the rare event they become severe) are serious tasks.

At his age, when sitting and treating a mild hypo, it’s appropriate, and only kind, that he has someone beside him.

But type one diabetes is more complex than boiling a kettle.

We’re fans of children doing chores in our house. Both 10 year olds can make a meal, do a load of washing and visit the village shop by themselves. That is appropriate independence. To expect a child that age to assume all responsibility for household management is something different.  It’s neglect and would have a serious impact on their ability to be a child, and to learn and develop normally.

The time spent on type one diabetes is comparable to managing a household. Constant fluctuation of blood glucose is the norm without a functioning pancreas.** But alongside continually assessing blood glucose levels and making around 50 treatment decisions a day, the tasks are unrelenting. Stocktaking and ordering supplies (more than 25 prescription and non-prescription items from different suppliers), meal planning, weighing, carbohydrate counting, night testing, reviewing data to make adjustments to doses and basal rates of insulin, ketone testing, changing pump reservoirs and cannulas (every 2-3 days), blood testing, inserting and setting up CGM sensors (weekly), writing care plans, educating, training, reviewing and implementing insulin and carbohydrate requirements for different types of sport, arranging sharps bin collection, trip planning, sourcing travel letters and permissions, clinic appointments…

To expect a child with type one to get an education while dealing with this would be absurd. Yet as my son moves to secondary school he will be expected to take on more of these tasks.  He’s a bright cookie, but I wonder what this does to his potential, and most importantly to his childhood. I’ll do as much as he’ll let me for now, and I continue to make sure he has the right support outside the home. The evidence and the law support this (as the Diabetes UK schools guidelines explain).

And finally, researching this blog post I stumbled across these US  “Age Related Guidelines for Diabetes” and was heartened to see: “It is now thought to be very helpful to have a supportive adult for any person with diabetes, no matter what their age.”

“It is now thought to be very helpful to have a supportive adult for any person with diabetes, no matter what their age.”

As my son gets older I’ll move from coach, to co-pilot, to distant admirer. 

But at any age, it’s good to come home to Mum for a nice cup of tea.

*An average proportion of time below 4 for adults with an HBA1C in the target range is 8%.  We are lucky my son currently achieves his target with around 2% of time in mild hypoglycaemia
**Up to 300% difference in insulin needs day-to-day has been found within closed loop insulin pump trials.

#DUKPC : two worlds collide

This week I had the honour of being an invited blogger for the Diabetes UK Professional Conference 2017. The conference curriculum was intense and all the bloggers felt their privilege and obligation strongly. I’ve been sharing highlights and observations via twitter and Instagram @bintsomama and via targeted Facebook groups, and over the next few weeks I’ll be editorialising observations on this site, as well as sharing reflections on the transformative impact of spending time with a group of adults thriving with type 1 diabetes.

The dedicated clinicians, HCPs and researchers I met and listened to almost universally filled me with overwhelming gratitude, and I was particularly grateful to see a high level of patient focus.

Yet the breadth of the programme made me feel that I was entering two parallel worlds.

The future ain’t what it used to be

Paul Johnson quoted Yogi Berra saying: “the future ain’t what it used to be.” Johnson’s team are looking at donor islet cell transplantation and shared the advances in encapsulation (which aims to protect the islet cells from both rejection and the continued autoimmune attack that causes type one diabetes). Islet cell transplantation  is available to limited numbers of people with type 1 currently, because of the associated risks.

I was stunned to see the progress of stem cell research: the elusive goal of producing functioning pancreatic beta cells from stem cells seems within grasp. Matthias Hebrok’s team have demonstrated a 92% correlation between Beta cells and hESC-derived Beta-clusters (in layman’s terms, home grown from carefully selected stem cells).

We followed the steady march from insulin pump, via the sensor augmented pump (Smart guard on the Medtronic 640 pump which reduces night-time hypos by suspending basal insulin delivery before the blood glucose goes low), to the possibility of the “closed loop” 670 (which adjusts basal insulin to manage hyper as well as hypo glycaemia) in the UK next year and the breathtaking results of the different artificial pancreas trials.

We learnt about the stunning impact of continuous glucose monitoring on HBA1C (in some trials), across all levels of education and type of insulin use and its undeniable impact on time in range. For an increasing number of people with type one diabetes, the future seems within reach.

And then, and then…

 

The trouble with the here and now…

Brian Frier spoke of the Scottish experience in tackling the enormous variations in care and outcomes across people with diabetes. It looked familiar from my reading of the paediatric audit.

Access to care processes is worse for adults with type one than those with type two. Both are serious conditions, but given the complexities of type one and the far higher risk of complications, this is unacceptable.  There was an admission from delegates and speakers that the focus on type two prevention has perhaps been detrimental to people with type one. Partha Kar hinted about forthcoming announcements designed to address this.

Chris Askew gave equal airtime to children with type one and type two in his opening speech. Fair enough? Latest data shows 258 children with type two under 15 in England and Wales. 18,549 live with type one. You decide.

In his speech, Chris alluded to the improvement in HBA1C in children with diabetes, citing the 10% improvement in those achieving “good control”. It is true that now around one quarter have an HBA1C of 7.5% (58) or below. But the NICE target is 6.5% (48) and only one in 16 children achieves this. Almost one in five also has a “very high” HBA1C, of 9.5% (80) or above, indicating an AVERAGE blood glucose of 12.5 mmol (target range is 4-7 mmol).

The overwhelming majority of children over 12 do NOT receive all their health checks and many are already experiencing early complications.  Screening for complications for the under 12s is not a NICE requirement and many, many children can wait up to a decade from diagnosis to receive checks on their kidney function, for example.

My next blog will cover psychological support, but data shows that this is hugely inadequate, despite being part of the NICE guidelines.

A brief, but very moving presentation from a Newcastle based group Type 1 Kidz described how one teen had not tested her blood for four months (recommended is at least five times a day) before joining. Their efforts to reduce DKA admissions and engage hard to reach patients showed the power of grass roots support.

I was pleased NOT to hear “non-compliance” or “non-adherence” bandied about by clinicians (at least in relation to Type 1). Emma Wilmot empathetically described the barriers to blood testing, using the examples of a shift worker in a supermarket, or a car mechanic.

It’s crystal clear that in type one diabetes the model of educated physician prescribing to patient doesn’t work. I’ve written before that our clinical time accounts for 0.02 per cent of the time we live with and manage this 24/7 condition (based on two hours of contact time a year). The variations in outcomes this creates is extreme.

As one delegate put it bluntly,

“if you’re type one and you’re not bright, you’re screwed.”

On the one hand you have an uber self-educated DIY group (self-funding or pressing the system for appropriate tech and even hacking technology to achieve outcomes that current tech can’t provide). On the other you have that girl, repeatedly admitted for DKA, refusing to test or the long-diagnosed adult who doesn’t understand why they have repeated severe hypoglycaemia when they take the same insulin dose for a salad or a pie. DAFNE is incredibly effective in educating, but take up is low.

Hard pressed HCPs are desperate to keep up, trying on one hand to learn about advice for self-dosing from CGM trends or to support the intense requirements of pump starts, on the other to meet basic needs.

Some of the technology sessions disappointed me, until I recognised that as a self-educated carer I’ve had more opportunity than significant amounts of overworked HCPs to educate myself about this.

And finally…

And finally, there was a welcome emphasis on glucose variability (a 300% difference in overnight insulin requirements were found in closed loop trials) and we heard about the variability in response to activity both between individuals, and in the same individual on a different day.

Self-management even with high skills and motivation is incredibly challenging (as we heard from athlete Tom Neal who was open about his personal glucose variability during sport).  We heard from Pratik Choudhary  about patients with an (outstanding) 2.2 standard deviation concerned about their number of highs and lows. In his words, “type one diabetes is an inherently unstable machine.”

“type one diabetes is an inherently unstable machine.”

Pratik Choudhary

 

This brings us back to the importance of what might seem distant and rarified now. That incredible research that brings us closer to a cure which takes the burden off the individual and the system. Hope is in a cure (and great tech in the meantime).

Sadly, though, seeing the current state of play, I can’t imagine how this could roll out to benefit my child in his young adulthood.  The future of an already stretched NHS isn’t looking bright. Practically, how would he ever access a stem cell transplant when we’ve had to battle to get sufficient test strips?

Perhaps the next conference will give some clues… 

#DUKPC dilemmas

Tomorrow’s the day. Earlier this year I was honoured to be chosen as one of five UK bloggers to attend the Diabetes UK Professional Conference. The past couple of weeks have been a twitter storm, alight with excitement about the presentations and the opportunity to represent our community.

I have been uncharacteristically quiet.

The conference means three days away from my young family. It’s the longest I’ll have been away from my children and since my son was diagnosed with Type 1 diabetes I have only left him overnight once (racing back from my oldest friend’s hen night at the crack of dawn). Separation anxiety has been getting the better of me. Not, as you might expect, because of my son’s condition. He’ll be with husband or at school, and at 10 he is very competent in his own care. The organisation part of my brain has it nailed when it comes that side of things: a well stocked fridge (insulin/glucagon) and cupboard (test strips/ketone strips/ketone meter/CGM sensors/pump reservoirs/tubing/cannulas). It’s the other side of things which slips – costumes for World Character Day not yet complete, the fact that four of my daughter’s five school tunics have hidden themselves somewhere in the house. But I feel the lack of them even before I’ve left: I had to relearn to walk distances when the twins stopped using their pushchair – I was braced, stooped forward, constantly alert to the width of the pavement long after they were scooting merrily ahead of me.

But there’s another issue which has been haunting my peripheral vision.  One that I need to address. Do I have a right to do this? For the other bloggers, Type 1 diabetes is THEIR condition.  They have the right to speak about it. It’s not mine. It’s my son’s. And worse, we have been facing some issues that might bar my brave, self-sufficient son from participating in an activity that he loves and excels at. I have been frantically reviewing my blog to weed out content which might reflect negatively on him, which might cast his condition as something to be feared, that makes him a victim. As he gets older, his digital footprint becomes more of an issue. We’ve been very careful not to use surnames in articles we’ve been involved with and he’s not named on this blog, although his picture does appear. While I’ve been doing this, I’ve stepped back from blogging, changed the privacy settings, and finally changed the name of my blog to make it less identifiable (it previously used my maiden name as part of the URL).

So, do I have a right to join the bloggers? My husband has reassured me that I do. It is my son’s condition but it is a family affair. In a previous life I was a professional writer, and my words are the only weapons I have to fight the ignorance that my son will need to battle. I’m part of a community of thousands of parents to children with Type 1 and I have a duty to use this opportunity to represent them.

Bags to pack, lists to write.  I’ll be there (travelling at the crack of dawn tomorrow, slightly behind the rest of the crew).  I’m looking forward to it now.  Not least for the opportunity to spend some time with the other bloggers living with Type 1, so they can help guide me through their experience on this role that I didn’t ask for, a parent of a child who thrives with Type 1 diabetes.

 

 

 

 

Traveling with our new companion

Please note that I’m a mum, not a doctor, so please don’t take anything on this blog as medical advice.  If you have any tips for me, please put them in comments: they would be very welcome!

Don’t it always seem to go, That you don’t know what you’ve got, ‘Till it’s gone (Joni Mitchell, Big Yellow Taxi)

 

Screen Shot 2016-07-21 at 18.07.34
31g carbs for big one

It’s time to make the leap.  Having put off international travel since my son’s diagnosis a year ago, we’re finally steeling ourselves for a trans-Atlantic adventure. My husband works for an American firm and spends a lot of time state-side, and with this latest trip to NYC falling in the summer holidays, we’re going too.

I’ve been prevaricating about this. Travel with type one diabetes presents unique challenges, but we can’t let our world shrink so I am biting the bullet. A lot of the things my son uses are not available over the counter: insulin, CGM sensors, pump infusion sets, needles. So we need to pack like we’re facing the apocalypse.  Double this (Joe Travel List) may cover it. Insulin needs to be kept at a stable temperature, which means that it needs to travel in our hand luggage in special cool bags, and we also need to carry liquid glucose, glucagon and various sharp things (lancets, needles, infusion introducer needles). We have a letter from our Diabetes Specialist Nurse (DSN) which should hopefully smooth our progress through security with these items.

FullSizeRender-2
My son wasn’t intimidated by a challenge on our visit two years ago…

 

Pump manufacturers insist pumps must not pass through full body scanners (as opposed to the more common metal detectors), nor through an x-ray machine.  The same applies to CGM sensors (even the spares carried in the hand luggage). Theoretically we are entitled to request a pat-down and screening with a handheld wand, although pump and CGM users regularly encounter problems. Even after assiduous lobbying from parent Rachel Humphries following a terrifying experience at Dubai airport, the UK Airport Operators Association still asserts that “government medical advice is that screening by security scanners pose no known health and safety risks and are safe for passengers with such medical devices” while conceding that manufacturer advice differs and that passengers are entitled to request alternative arrangements. As we are travelling to the USA we will carry this card for the TSA.

F*k what they say
F*k it if they talk
It really don’t matter.
We’re going to New York (Stephen Fretwell)

Once through security, we need to make the normal arrangements for queuing, long walks to gate and delays.

Take off and landing can affect the pressure in the pump, causing hypo- or hyperglycaemia due to erratic insulin delivery.

“Diabetic” meals on board unfortunately don’t mean carb counted (we measure every single gram of carbohydrate my son consumes and enter it into his pump to try to get the most accurate dosing possible), so we will be eschewing this in favour of weighing out the “normal” meal. As we’ll be eating in restaurants for most of the week, we’ll have our fold-out scales and Carbs&Cals book with us.

Like any great love, it keeps you guessing
Like any real love, it’s ever-changing
Like any true love, it drives you crazy
(Welcome to New York, Ryan Adams/Taylor Swift)

On arrival, advice from our DSN is to simply change the time on the pump to the new time zone. Experience of travel with my children makes me a bit wary of this: I know their bodies don’t adapt instantaneously to the new clock. My son has twice as much basal insulin at some times of day as others, and the ratio of insulin to carbohydrate is radically different for different meals (e.g. 1:9 at breakfast, 1:23 at lunch). As too much or too little insulin can have life-threatening consequences, I’ve been giving this quite a lot of thought.  Diabetes Care‘s recommendation is in line with my thinking :

“If your journey involves a time difference of more than four hours, then set the pump to administer the lowest basal rate as the constant basal rate upon arrival at your destination. Maintain this constant basal rate for approx. two to three days. Once your body has adjusted to the new time, you can return your pump to your original basal rate profile.”

I want to wake up in a city that doesn’t sleep (Sinatra)

FullSizeRender-3
Can we really forgo Joe’s Pizza this time?

This doesn’t solve the problem of the carb ratios, but I’m aiming to play it conservatively and to encourage my children to see New York not as the city of burgers, pizza, hot dogs or even big apples and to embrace the city’s modern love of paleo. Children with type one diabetes need carbohydrates to function and grow, but less carbs means less margin for error. I expect we’ll be able to make up for it in “free carbs” which we use to fuel exercise, as we stomp through the streets or chase Pokemon in Central Park.

 

Finally, should the worst happen, we’ll need travel insurance that specifically covers T1D.

And breathe.

If I can make it there
I’ll make it anywhere
It’s up to you
New York, New York (Sinatra)FullSizeRender-4

Letter to my daughter on her birthday

I wrote this two months ago, when it was my son’s “diaversary.”  It was too raw to post then – it was a bad time for us.  We’re in a much better place now, but I still mean what I said.

 

My darling girl,

You were my third child, meant to be my treat, my spoilt one, after the chaos of twins. It didn’t always work that way, my car seat baby, but we had some stolen moments, the two of us, while the boys were at school.  How I loved those moments.

Then all of a sudden it was your fourth birthday, the first day of the summer holidays and you were due to start school in two months.  How I wanted to make the most of that little time.

And then a monster turned up at your birthday feast, and never went away again. As your brother ordered drink after drink, the penny dropped.  I realised why he’d been so tired for so long, that his chiselled face wasn’t him growing up, but something far more sinister. I knew it was Type 1 diabetes, a life threatening autoimmune condition.  I knew our lives had changed, but I didn’t know how much it would steal from us, from you.

I’m sorry… I’m sorry that I didn’t put you to bed on your birthday, that I took your brother to hospital instead and stayed with him.  I’m sorry we sent you away to stay with Granny while he learnt to draw blood 10 times a day to test his glucose and to inject himself five times a day.

I’m sorry that summer wasn’t about you, about last moments of early childhood and getting you ready for school.  I’m sorry it was about learning how to live with the beast.  How to deal with hypoglycaemia that could lead to coma, how to count every gram of carbohydrate that passed your brother’s lips.  I’m sorry I couldn’t involve you in cooking anymore because each meal became a series of equations.

I’m sorry I couldn’t sleep in your bed anymore because I had to wake to check your brother and sometimes treat him with glucose. That when I tried to read your goodnight story my mind was counting the minutes until I could check on him.  I’m sorry I shouted when he went low and you just wanted the last page of your book.

I’m sorry I stopped smiling.

I’m sorry you learntIMG_0004 your numbers from a glucose meter, learning the critical difference between a 3.8 and a 7.4, and on a bad night, learning your teens way ahead of time.  I’m sorry you look at roadsigns and see four point zero instead of forty.

I’m sorry you sometimes refuse to eat treats at school in case it makes your brother sad.

I’m sorry that this year wasn’t about playdates and learning as the monster ate away our evenings. I’m sorry that sometimes I can hardly speak, let alone play. I’m sorry that when we have good times, I’m only 50% present.

I’m sorry I didn’t always notice how thoughtful, kind, fun and stylish you’ve become.

 

IMG_0642I’m sorry that when you’re tired or thirsty, you have to bleed too, because there’s a strong chance the monster will come for you too.
I’m sorry you’ll share your birthday forever with the day the monster came to stay.

I’m sorry that you’ve now lived a fifth of your life with this beast.

 

But on your birthday, I promise some things as well.  I promise that this vile thing which eclipsed our world is starting to recede.  It will always be there, but everyday we’re stealing some of its power, relegating it to a minor role in our lives.  I can’t promise that I can refuse to do its bidding. But when it’s not showing its claws, it will walk behind us. It will roar from the cellar.  It won’t steal your feast again.

I can’t promise you the world I want baby.  But I promise you I’ll try.

Happy birthday darling girl.

 

xxxxx

PM with T1D

A quick response to the news that Theresa May looks likely to be appointed Prime Minister of Great Britain. Firstly, my son is going to be ticked off as she’s thwarted his ambition to be the first PM with Type 1 Diabetes, but I’ll reassure him that he might be the first male PMWT1D (no offence Jamie Reed, MP, but you have a young buck on your heels).

On first look, setting aside political views, the news is positive: proving that people with T1D can achieve anything. But there are doubts. May was diagnosed very late (51) – many T1D “names” are diagnosed later. As well as raising the question as to whether she understands what our kids experience, there is the fear that this achievement could be used against them. Why should they need help, DLA, EHCPs, extra accessibility measures, if a person with T1D can run the country? Why invest in a cure or new technology if this is such a very manageable condition? Speculation abounds about her clinical management – she’s rumoured to be on only two injections a day suggesting that she retains more pancreatic function than a typical person with T1D.

Whatever her clinical status (which is none of anyone’s business), the argument is similar to saying that because a woman is PM there is no longer wage inequality or gender discrimination. Yes, a female or T1D PM is positive, but it doesn’t negate the need for progress.

As to her empathy for kids with T1D… She has worked with JDRF and talked to children. She’s, by all accounts, an intelligent woman, and she gets it. But we should expect no favours, quite the opposite.  With a pitiful number of children getting their care measures or achieve their glucose target already, that’s a worry, let alone access to new technology such as the artificial pancreas which could become available during her tenure.

On the whole though, anything that raises awareness of T1D must be a good thing? And we at least know that she has the skills for a top job: managing the vagaries of T1D, facing the fears, multitasking and making life or death decisions in a volatile environment, being acutely self-aware, numerate, analytical, learning continuously and showing resilience and emotional control. These are the skills my son has too. I’m only sorry she’s pipped him to the post.

 

How technology has changed our lives

Today INPUTdiabetes are running a virtual #flashmob to raise funds and to raise awareness of their purpose to support people with diabetes to access appropriate technology. Please donate £5 if you are able by texting “PUMP16 £5” to 70070.

Firstly I want to declare our privilege. We are able to fund my son’s continuous glucose monitor (CGM) at a cost of around £3000 per year. His insulin pump is supplied by the NHS (it is not available through private health insurance): he has a very clear clinical need for this and I was able to educate myself and advocate for it. We had to wait for eight months, but we were eventually successful.

These pieces of technology are life changing beyond belief. Both in living something that looks more like a normal life, and in health outcomes.

His CGM monitors his levels in real time and shares them to his iPhone and the iPhones of up to five carers.  It alarms when he is going low or high.  Before we had this, he would check his blood sugar at least ten times a day by pricking his finger, drawing blood and applying it to a test strip in a blood glucose monitor.  In between times we had no idea what was happening: we were stumbling in the dark without a map through mountainous terrain.

Screen Shot 2016-05-09 at 21.33.39As well as the reassurance and the independence it gives him (he can be away from us while we care for him virtually), it enables much better blood glucose management. For example we can hone the timings of his insulin delivery to match different kinds of foods. The graphs on the left show the consumption of the exactly the same food with the same amount of insulin on two consecutive days.  In the first the insulin is delivered 8 minutes before eating and his blood glucose soars to 18 mmol. In the second, we wait 15 minutes and he experiences a hypo.

Without the CGM we would never know about the spike in the first picture, which over time would cause damage.

 

The CGM isn’t perfect.  It is painful to insert, and because he is very lean it sometimes works its way out of the subcutaneous tissue into his muscle and stops working.  He needs to calibrate it using finger pricks and he still needs to blood test when low or doing sport. We still wake up in the night to check we don’t have signal loss and to review his levels.

His insulin pump delivers microscopic amounts of insulin throughout the day through a canula which he inserts every three days. We tell it what “basal” insulin he may need for different time blocks, varying this for sport, illness, etc.  It also delivers mealtime insulin and correction doses: my son or a carer enters the blood glucose and grams of carbohydrate into the pump handset and confirms the dose. We can adjust the rates for different types of food – a single “bolus” for higher GI foods like bread, an extended one for lower GI/fattier foods like chips.

IMG_1307
 

The tummy patch is the CGM. The pump cannula is in his leg.

 

 

The pump isn’t an artificial pancreas because we instruct it what to do. The microscopic doses are life changing though.  Before, we relied on a long acting insulin, delivered through two injections a day. This had an unpredictable peak and trough action. The smallest unit we could use for the four mealtime injections was 0.5. At one point my son only needed 1 unit for 50 grams of carbohydrate, so could only eat in increments of 25 grams (about 100g of chips). At this stage we could only safely correct blood sugars over 16 mmol, because of the size of the units compared to his insulin sensitivity. I described this as trying to do brain surgery with a pick axe.  On the pump we can in theory correct at any number above 6 mmol. And, importantly for me, I can do it when he is sleeping rather than waking him to self-inject.

 

 

My son was limited to Screen Shot 2016-05-30 at 08.18.36his tummy and outer thighs because he is lean.  Trying to find
enough sites for his six plus daily injections was problematic. Inserting a cannula every three days alleviates this a little. This picture shows one month’s worth of injections in a small child. The child in the picture is able to use their arms as a site which we can’t.

With technology we still need to work very hard, weighing everything he eats, trying to second guess the effect of exercise, illness, excitement, stress and the weather (no, seriously).  But now we have the data to enable us to do this more accurately and the tools to make changes.

Screen Shot 2016-05-30 at 07.46.20.png
 

Costs of Type 1 diabetes to the NHS. The biggest costs are inpatient treatment and non-diabetes drugs. Investing in technology could turn this around.

 

I want more people to have access to this, which is why I am supporting  INPUTdiabetes. The UK is behind in pump and CGM use. Around 40% of Americans with T1D use pumps, in the UK it is around 10%. It is less than 20% in children, despite the NICE guidelines allowing for use in under 12s. Some of this may be due to patient choice, but delays in access or clinics who don’t “do” pumps are a more significant factor.

CGM use is very rare and it is difficult to make the case in the UK. For example my nocturnally hypo-unaware child who plays 7 hours of competitive sport a week would need to lose all his hypoawareness and compete at regional sporting level to qualify. In Australia a budget has been set aside to allow all children with T1D to have access to a CGM (unfortunately not adults) and in the US, insurers have been required to fund CGMs.

 

Ironically much of the technology saves money.  As well as reducing the not inconsiderable cost of test strips, CGM and pump therapy have been proven to reduce the number of hospital admissions for short term complications (severe hypoglycaemia and diabetic ketoacidosis) as well as reducing the long term complications which are the financial burden that we hear will crumble the NHS.

There are financial, psychological, moral and health reasons to improve access to technology for people with Type 1 Diabetes.  Technology makes sense.  It should not be the preserve of people with privilege.

 

 

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