Hi Tim, I'm sorry to read about your daughter's diagnosis. I know how it can leave parents feeling overwhelmed and upset in the early weeks as there is so much to come to terms with and learn about.
Do you not have any family that you can stay with in the UK? Or can the army not provide you with some accommodation whilst you get your daughter's diabetes settled? The reason I say this is because I know with my daughter it took quite a few months of needing support getting her insulin levels correct. In the early days following diagnosis Type 1 diabetics often (nearly always I think) go through what they call a "honeymoon period". This is when the pancreas is still producing some insulin but not enough, the amount of insulin it goes on to produce eventually slows right down to producing no insulin at all (or very little). The problem is that it's not always a smooth gradual reduction in insulin production. For my daughter she produced very little insulin in the beginning meaning that she needed quite a lot of injected insulin in the early weeks. Then her pancreas seems to start working again and her injected insulin needs dropped off quite quite dramatically (they warn you not to get your hopes up that your child is recovering from their diabetes because it can seem like this, but 100% guaranteed they will stop that insulin production, it's the honeymoon period). Then again several weeks later her natural insulin production stopped and her injected insulin needs increased again. During this honeymoon period I needed a lot of support from our consultant and diabetes nurse in working out how to adjust injected insulin doses. If you want to stay in Brunei you need to know if the doctors there understand enough about diabetes to be helpful, or perhaps they can liaise directly with the consultant in the UK for advice if they need to. If that liaison is necessary you would need to make sure those lines of communication between the UK and Brunei are in place before your return.
Regarding your question about how good the support in the UK is for children with diabetes then I'd have to say in my experience it has been very good. We moved clinic about two years ago to one in the neighbouring county and my experience at both clinics has been good. However at the first clinic we did see a locum consultant whose advice I didn't agree with and didn't feel supported by, we were getting to see this consultant too often (rather than the original consultant who I did like) and I began to feel frustrated and stressed by the lack of help hence the decision to change clinics. I also wanted a second opinion about something and as my daughter liked the second clinic and the consultant there so much we decided to stay with the second clinic. We still keep in contact with the diabetic nurse from the first clinic and she is fantastic, I couldn't ask for better and more understanding support. I'm not sure if all clinics are going to give the same positive experience as we have benefited from, I should imagine that it varies and perhaps you can do some research into your propsed clinic to find out a little more about them. I'm afraid we don't use the Oxford clinic so I cannot offer any advice about them. If you are not happy with the support provided you can request another clinic.
To give you an idea of the care my daughter receives here: We visit clinic once every 4 months, initially it was once every 2 months following diagnosis, we can visit more often if we feel it is needed or if the consultant feels we need it. At the clinic visit my daughter is weighed, measured, blood pressure taken, HbA1c test done, injection sites are inspected and then we have a consultation with the consultant and diabetic nurse to discuss her readings for the past few months and any other concerns or questions we may have. The HbA1c test is a finger prick test and the results show what her average blood glucose reading has been for the past 2-3 months. The result gives an indication of how well controlled her blood glucose has been. Depending on the HbA1c result, and looking at her diary of blood glucose readings from the past few months, we discuss if any changes are needed. Since diagnosis this has involved increasing and decreasing insulin doses, changing insulins, changing insulin regimes, getting her put onto an insulin pump (yay, problems solved!). Everyone is different and different insulins suit different people so sometimes it's a matter of continual tweaking and changing before you find what works best, for this you need the support of a doctor who is knowledgeable and experienced in diabetes and the different insulins available. Your daughter might be lucky and you might find something that works for her quite quickly. I'm not talking about getting something that works okay, I'm talking about finding something that works very well so that you can get the best results which means less chance of complications as your daughter gets older. In addition to the 4 monthly clinic appointments there is also an annual diabetic review which means taking bloods and having it screened for several things, I don't remember them all now but they include coeliac disease and thyriod function. Although my first clinic recommended having this done anually, the second clinic now recommends them every 2 years in young children unless symptoms present themselves that makes it necessary to screen. We also have here eyes tested and retina photographed every year, although this is only recommended once they get older. There is also a urine test done to check for protein in the urine, something to do with kidney function. That we had done 5 years after diagnosis and I'm not sure if that's an annual check, we've only had one test done so far and that was last year.
I'm sorry, this is turning into an essay!
About schools, well that varies! Our school has been fairly good and very supportive in every way apart from they didn't want to take responsibility for insulin injections. I was welcome to go into school and do any injections but the staff were afraid of the responsibility and were concerned what would happen if they made a mistake in dose calculation. I didn't want to force anyone to take on the responsibility so I went into school each lunchtime to do injections. Fortunately I work part-time and that is from home so it was easy for me to do. In all other aspects of diabetes care at school they have been very good and supportive. However I have heard varying stories across the country, some schools won't even do the finger prick test, other schools are happy to do everything including the injections. When it comes time to find a school for your daughter you'll need to ask a lot of questions. The diabetes nurse can visit the school and discuss your daughter's care plan with them and agree who will take responsibility for what, the diabetes nurse is a very valuable help when it comes to liaising with schools.
Both the clinics we've had experience with have organised events or meetings. The first clinic we attended organises a evening every so often where parents and children get together for an evening to chat, swap stories etc. The clinic we're at now organises get togethers for families and the children, they are also starting to organise coffee mornings and events with a guest speaker, these are aimed more towards the parents. The clinic can organise training courses like learning to carb count (work out how much carbohydrate is in food so you know what amount of insulin to inject - you won't do this on twice daily injections but knowing how to carb count is still useful). There will also be a dietician who you can see for help and advice about what food is suitable and how it affects the blood glucose. This forum is very useful if you want to learn, I have learnt so much from it and gained so much support. There is also a book I always recommend, it's been one of the most useful things I've ever bought, it's called Type 1 Diabetes in Children, Adolescents and Young Adults. Might be scary to look at that book now as everything is so new to you but it will be a very helpful tool in learning and understanding as this all settles down and things start to make sense. I say that a consultant and nurse can only explain so much in a short appointment time, this book you could spend hours reading and learning from, time that a medical person simply does not have to explain it all to you.
My thoughts are that your daughter needs the support of experienced consultants and diabetic nurses in the beginning, this may be days, several weeks, possibly a few months - everyone is different. Maybe after that time with distance support from a UK clinic and support from local doctors in Brunei you may be able to return and carry on where you're leaving off. Make sure too that insulin supply is reliable in Brunei (your daughter cannot ever go without insulin) and also supplies of testing strips, ketone test strips, glucagon injecting kit etc. Find out in advance what medical support will be in place incase emergency treatment is ever needed e.g. ketoacidosis, severe hypo that may need emergency medical support.
I'm sorry this is such a long post!
