My life in Science whilst raising a child with type 1 diabetes

Biomedical Science, Type 1 Diabetes, Coeliac Disease and other findings


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Type 1 Diabetes, complications and cost effective treatment models in paediatrics

 

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Recently, I seen a shiny graphic on IFLscience’s twitter page (@IFLScience) depicting the significant amounts of money raised for certain disease/conditions compared to those which have highest mortality rates (U.S. data). Published in Vox, by health author Julia Belluz, it highlighted that the amount donated to breast cancer research was unbalanced to the amount of deaths caused by this form of cancer. The data further showed, most deaths calculated from the CDC (Centre for Disease Control and prevention) data were due to heart disease. This article was written in response to the latest ice bucket challenges for ALS, the graphic can be found here.

Almost immediately, I zoned in on the green dots representing diabetes.  If you look at the image, you will see the comparative donations to deaths caused by diabetes. This image, on the whole is pictorial and not really relevant to what goes on in the UK – for that I fear the amount raised for Diabetes research would be even smaller in comparison to the deaths caused. However, let’s look at complications. One of which, CVD/ heart disease is a major killer in the UK.  The British Heart Foundation say is the second biggest killer in the uk!

Costs associated with Education

With this in mind, I started to try and research more information on facts and figures relating to UK diabetes, it’s complications, management of type 1 diabetes and more personal to me – relating to children.  I found a Diabetes Uk document which addresses issues surround type 1 and type 2 diabetes in Scotland (found here) and highlights the fact that children with Type 1 diabetes in Scotland need support, personalised care and infrastructure in place during educational environments to support their health needs.  The incidence in younger children being diagnosed with Type 1 diabetes in Scotland is also on the rise, and with one of the highest prevalence rates in the world I would say this issue needs addressing, with urgency, by groups who are willing to tackle the underlying questions surrounding the cause of this autoimmune condition and it’s treatment and/or cure.   In education, the cost of caring for a child sometimes is put in place with additional support funding – but not always.  Staffing levels can be  poorly managed and the care of the child at risk – as was our case (and why I had to homeschool my son for a short period of time before he started secondary school recently).  Government and local authortities must be encouraged and advised by leading health authorities on the complexity and importance of supporting a child at school with Type 1 Diabetes.  Children <5yrs starting school and learning to cope with this condition have an adult sized worry on their very little shoulders and setting aside the politics and costs of this, they need positive, nurturing and caring environments to help them feel they can take this on and cope with the daily challenges.  Surely you would not be happy to inject yourself with a dose of insulin, with fear it could kill you when you don’t understand what you’re doing?  Any yet, some environments are placing a great emphasis on children to be as independent as possible.  This gap in knowledge in society, of the severity of insulin replacement, and it’s potential to cause severe hypoglycaemia should be at the root of all educational policy and the needs of children with this life threatening disability.

With paediatric care in mind, I can say from my own personal experience of caring for a child with Type 1 diabetes, and aiming for tight glycaemic control (to ward of the evil ‘diabeasties’) is like a game of pin the tail on the donkey at times.  Constant measurement of food, dose adjustments, finger prick testing, site rotations, faulty insulin (which doesn’t change colour when denatured –  this would be a great idea for Novo Nordisk wouldn’t it folks?) counteracting extreme exercise, battling with growth hormone, adjusting doses due to possible gluten contamination (if your child also has coeliac disease like mine does) calculation of the glycaemic index and fat content Vs insulin delivery (dual wave/combo) ratio’s – the list goes on.  It’s a wonder I don’t receive an honorary degree in mathematics!

What about the cost of current treatment methods?

So the cost effectiveness for pump therapy for us is one of a more qualitative result.  On multiple daily injections (MDI) our son used to inject >7 times a day with insulin.  Relying on a manual finger prick to give a small snapshot of what his blood glucose levels were doing – at that time only!  At times, he used to refuse to eat just to save another injection, at other times he used to sneak food upstairs and then cry when he felt consumed with guilt that he didn’t tell us and his glucose levels would be through the roof!  His legs and arms were bruised, and swimming with a child covered in bruises was difficult at times.  The social anxiety grew as he got older, injecting in front of friends or the constant ” my gran has diabetes, she doesn’t need to have injections” from friends used to send him into a furious rage not unlike the incredible Hulk.  His HbA1c fluctuated between 7.9 and 8.4% and despite daily calculations and management, it seemed a dauntless task to get no reward.  On starting insulin pump therapy, he now has an HbA1c of 7.1% and a better future ahead.  We still do need to rely on daily finger prick tests (10-12x) to get a clear idea of how to progress with each bolus or correction, as our local health board do not fund for CGM (continuous glucose monitors) at this time.

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A recent study of adults with Type 1 Diabetes in Australia, found the CGM + CSII insulin system to be cost effective in patients with severe hypoglycaemic unawareness, but why does it need to get the stage that someone is needing ambulatory care before they are considered for this technology? In Scotland, there are very few children with funded CGM technology and those who do use the linked technology to communicate with the pump of an impending hypoglycaemic attack tend to self fund – costing over £3,000 annually.  JDRF discuss the CGM system and running costs here.  These patients and families often have an HbA1c <7%  which speaks for itself. In terms of prevention of complications further in life, this should be standard care for paediatric patients in my view.  Balancing the costs of hospital admissions, treatment for complications related to Type 1 Diabetes surely would outweigh the model for increased access to CGM technology?   pump and cgm

Like anything, the further you read and research, you find there are people in the world who genuinely want to see this cured from collaborations to research groups globally.  Calls to collaborate with some of the worlds biggest pharmaceutical companies may bring about a fascination that returns will be high  (if a project can deliver better therapies) but also, from a technological point of view, if great minds can come together to produce the likes of the minimed duo from Medtronic, then I feel very hopeful that sharing of data and research can highlight the incumbent path for a cure.

So for all those inundated with paperwork, deadlines, project milestones and KPI’s – remember there are people fundraising for you, people supporting you and hope that all these trials will lead to greatness and hopefully a Nobel Prize?

 


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And so it begins…

So, remember how I said I was leaving Uni and looking for work. Well that’s changed, onto Plan B. I feel happier that I can go back for my honours year as a part-time student due to the settling in of a certain secondary school boy with type 1 diabetes. Last week we had blood glucose ranging from 2.6mmols/L to 26.7 mmols/L (the latter due to a missed bolus of a huge bowl of cereal – that reminds me we need milk). The former hypoglycaemic attack brough about my gym class, and the fact he didn’t take his insulin pump off the whole duration. If Medtronic or Bayer Diabetes can come up with a tool to help pre-teenagers/teens to remember these small issues, then my life may be less freful. On the day that I had said I would collect him from school in the car, he forgot and walked him with his friends. You can imagine, I sat in the school car park until the sea of pupils dissipated and no one was around. Half and half feeling like a prat for mbeing so over protective but still demure enough to know that it’s because I love him – I drove home with my tail between my legs. Only to find him at the front door, sitting on the step drinking lucozade. If I had shares in the is glucose drink, I’d be rich. The main point is, yes he had a hypo when I wasn’t with him, but he was aware of it and treated it sitting there like a little orphan on the doorstep. I digress, the point I am trying to make about University life was, I thought to juggle all these responsibilites that attending university as a full-time student would eventually bring around my demise. Cue my phonecall to my supervisor, in desperado, griping about the job market and what was I going to do with a basic degree!

All drama over with, I am now happy to be continuing with my honours year project whilst still logging in to read my job alerts every now and again. Only difference being the job alerts are now for part-time work. But all that is by the wayside, when I read about Dorothy Hodgkin recently I realised that she is another of female heroines. It’s good to have positive role models in science, and I’m all the more delighted that she found the structure of insulin through her amazing efforts with x-ray chrystallography!


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Job Hunting!

These past two weeks I have been mostly job hunting! I decided after my summer work placement that I enjoyed learning new lab tecnhiques and skills and the time felt right to take myself out of University and honours year (now that I have my Bsc in Applied Bioscience) to concentrate on learning in industry. Sub note: I might go back and do postgraduate study at a later stage, but for now, I want to start applying my knowledge and gain more hands-on scientific experience.
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To get down to the nitty-gritty, I feel that sometimes the university labs can be overcrowded and with such short time slots for classes, the chance to even get touching some equipment or a quick glance through the crowds (there are 84 in my class) is at times, frustrating. Nevertheless, I did learn quite quickly to push my way through (previous years experience at Glasgow Barrowlands comes in handy) and make sure I asked questions on what was actually happening – most of the time! For example, a recent PCR assay meant a trip upstairs to the analytical labs, where the software and plate reader were installed. The whole class, trampled and squashed in this lab almost felt like some strange Edinburgh Festival street show, with a small clearing in the middle where the lecturer tried his best to explain threshold and Ct counts whilst pointing at some very distant graphs. My summer placement was crowd free and access to all lab equipment meant I could apply my knowledge without haste – giving me some time to take account of all the gaps in my knowledge and how best I could transfer my skills in employment.

So I’ve updated my LinkedIn profile, polished my CV and read through quite a few interesting posts about career change and being a “mature” student – all of which have affirmed my belief that getting myself out there is the best move at the moment – before I get even more “mature”.

Then there’s the vast sea of laboratory positions to siphon through each day – each with differing defitions of the term “laboratory technician”, “research assistant” or “medical laboratory assistant”… some posts require only an HND and yet others (with the same job title) look for PhD/Masters qualificatons. It’s all very similar to the fact that the scientific community have several terms leading to the same meaning. I once heard a senior Biomedical Scientist describe this phenomenon as intimidation. I prefer to look upon the whole thing as being a tad quirky and geeky – it keeps my sense of humour from abandoning me during such a period of life changing decison making!

Wish me good luck in the job hunt, hopefully I will get closer to my dream of being involved with Type 1 Diabetes research. You never know, one day we could be working together?


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IBMS, CPC, HCPC, Portfolio, Hons – how many more abbrev. Can my blog take?

JohnMilport-1Diddle Diddle dumpling, my son John!

Hi everyone, I’m currently on a work placement over the summer working with IBHER (Institute of Biomedical Health and Environmental Research) within University of the West of Scotland laboratories.  This entails me volunteering basically, to gain much needed experience.  For which I am very grateful, mainly because every job I see advertised states “2 years post qualification experience”. Have you seen this?  I understand completely as a mature student, and one whom has taken a career change, that you simply cannot allow a new graduate to enter labs and start playing ‘The scientist’, but within my degree there was limited accessibility to placements.  Hence, when the sun is shining, and you kids are all playing with hoses and paddling pools whilst I am in the labs!  Violins please – at the ready.

I write this blog with some dismay also, because as you may know, I wanted to study Biomedical Science to allow me to gain access to labs involved with Diabetes Research – possibly to gain a job as a research assitant/technician.  However, my summer placement involves working with murine and human models of OA (osteoarthritis) and characterisation of the cellular infiltates in synovium.  This involves IHC techniques, and microtomy.  Both of which, I am enjoying learning but I still have my heart and passion set on Diabetes research. Does this sound petulant?  I hope not, because I sincerely am grateful for this opportunity but I just fear it may create some unwanted distance from my goals.  In one hand, we are encouraged to think of our goals – or aspirations, but on the otherhand we need to balance reality and what fits in with our own personal circumstances.  The balance which we all live with in society.

Also, sometimes I have doubts about completing honours year due to the continued need for post qualification certification and the fact that nowhere has the time to allow this to happen in the NHS at the moment.  I know of two friends who studied Bsc Hons in Biomedical Science and now work as Band 3 lab assistants – a job which is advertised as “no formal qualifications are necessary”.  So, what to do? honours year or not? that is the debate.  Meanwhile, my family are enjoying summer on our limited budget – and beans are a staple diet right? HashtagNotInItForTheMoney

On a more personal note, I have been volunteering as team leader for Diabetes Uk Big Collection Weekend again and helped to raise over £12M for the charity with all the wonderful volunteers up and down the country in Tesco stores.  I am forever grateful to my friends for giving up their time to come and help my team, and I promise to continue my support for both JDRF and Diabetes Uk no matter what.   John and some friends managed to show the Tesco staff their Insulin pumps, and got some amazing support from members of the public who were not aware of how serious Type 1 diabetes actually is to live with.

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