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Moddey

Moddey

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Hello everyone,
my son was diagnosed with type 1 about six months ago. He's still in remission, so the insulin dosages are relatively small. The diagnosis was accidental, I took him to the doctors as he was complaining it hurt to wee and I assumed it was cystitis. The quick visit to the health centre turned into a week in the hospital :(

We live in Finland, I am a native Finn and my husband is British. We have been playing with the idea of moving back to the UK so it would be interesting to hear what the treatment is like for type 1 over there. Finland has a very high ratio of childhood diabetes (6.6 in a 1000, compared to the 2.5 in a 1000 in the UK), so the study and care here is (supposedly) good. However, I recently read in the papers that in the UK, diabetes care was something like 3rd best in the world. So please share your experiences, they would be very helpful 🙂

We are a family of five, my son is four and we also have a girl, two. My husband and I have gone back to university and are taking care of the children at home. Which obviously makes the diabetes care a lot easier than stressing about him being in care.

Lately his blood sugars have been all over the place, he can go to 2.1 (mmol/l) without ANY symptoms and the next day it'll stay around twenty for no obvious reasons. However, his HbA1c was good when it was last checked, just before Christmas, so generally he is doing well, I suppose.

Sorry for the long rant 😉
 
Hi and welcome to the forum!:D

The care in the UK does vary from one hospital to another. There are some bad clinics and people very quickly get referred to a better clinic.

Is your child on a pump or injections? The 'good' hospitals are very pro-active about pumps and have bigger numbers on their books because they are popular.

Children in Scotland rarely are offered pumps as they have a different system, but people are campaigning to get this changed.

We live in Wiltshire and our clinic is a 'good' one as we have quite a lot of pumpers and the diabetes team are lovely.

There are other excellent teams around the country - do you have any idea where you would like to live? If you do i could find out where your nearest hospital would be and ask what the team is like for you.🙂

My son is 11 and started pumping 4 months ago - his hba1c has improved and he loves the pump much more than injections.🙂Bev
 
Hi Moddey and welcome I cant offer any advice but I wanted to welcome you to the forum .I wish you luck wth whatever you decide
 
Thanks Bev!

bev said:
There are other excellent teams around the country - do you have any idea where you would like to live? If you do i could find out where your nearest hospital would be and ask what the team is like for you.🙂

My son is 11 and started pumping 4 months ago - his hba1c has improved and he loves the pump much more than injections.🙂Bev
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Firstly, thanks for the reply and the help :D

We have been thinking of returning to Norwich or somewhere in Norfolk, as we used to live there. Another possible area was the south-west, we were looking for houses in Exeter at one point.

I thought it would be a bit like that with the care, I suppose it's the same here. The bigger hospitals and cities have better specialist care. Though you will be offered a pump everywhere in Finland but only the bigger hospitals have the special wards where you stay for few days while you get used to it. In theory, everyone should have access to the same care and every child diagnosed with diabetes stays in a hospital for a week. The parents are there too and are shown how to measure sugar and calculate carbs.

We were told that the earliest a pump could be considered would be a year after the diagnosis. And I suppose at the moment it's not such an issue as there are not that many insulin injections a day. But it is definitely an option in the future, especially when the night-time insulins start.

Glad to hear your son likes his pump and it's working well, I can imagine that a young boy would love the technology, too 🙂
 
Hi Moddy, welcome to the forum.
 
Hi Moddey,

This is my advice. I've had type one for fourteen years, since I was five years old. I only just learned to carb count over the summer of 2009. It's really worth getting that under your belt before you consider a pump. I've had better results when I was carb counting than I ever did before. That was slightly messed about when I went to university though! I've got a little over ten weeks to wait until I get my pump. I guess what I'm driving at is get things sorted on MDI as far as carb counting, all that goes with carb counting and your sons basal insulin dose. It'll make for less work when you come to go onto the pump.

As for a good clinic I've only known one hospital. Eastbourne has a good adults team but I would advise you to steer well clear of the childrens team. I was under their care until the age of sixteen. The doctor couldn't speak English with any real degree of competence. That made it exceptionally hard for my father who always went to the clinics with me. The reason he always found it difficult is because English is his third language. This consultant's advice in essence, boiled down to "do what you find works". Not the best way to go about it. On the other hand the adults team I am under teh care of is excellent. I said I wanted to go onto a pump in November last year and I wil lbe getting the one of my choice in April.

Hope this helps,

Tom
 
Hi Tom,

thanks for the advice, it was very helpful.

I find it strange how carb counting isn't encouraged more in the UK. Here it's an essential part of the treatment. The first thing we had to learn at the hospital was how to calculate the carbs and adjust the insulin accordingly. A dietician made a meal plan but we have been calculating my son's meals for so long it's already becoming a routine. I find that being careful with the amount of carbs, and also the type of carbs, really helps to keep the blood sugar levels under control.

Can I just ask, what kind of pump do you use? Do you punch in the amount of carbs? Does it monitor your blood sugar or do you measure it yourself?

It's great to hear that you're getting the pump you've wanted, hope it works well for you 🙂

And as for the uni part, I can imagine it would be hard to control the levels when your diet consists of takeaways and cider&black 😉
Good luck with the studies!
 
Hello Ira, welcome to the forum🙂 Care in the UK can be patchy, particularly for Type 2 as they tend to be under care of their GP. I was diagnosed aged 49 and the care I have received has been very good. We have a lot of members living in the Norfolk area, so if you are considering moving there I'm sure they can offer you advice on finding the best clinic.
 
Moddey said:
Hi Tom,

thanks for the advice, it was very helpful.

I find it strange how carb counting isn't encouraged more in the UK. Here it's an essential part of the treatment. The first thing we had to learn at the hospital was how to calculate the carbs and adjust the insulin accordingly. A dietician made a meal plan but we have been calculating my son's meals for so long it's already becoming a routine. I find that being careful with the amount of carbs, and also the type of carbs, really helps to keep the blood sugar levels under control.

Can I just ask, what kind of pump do you use? Do you punch in the amount of carbs? Does it monitor your blood sugar or do you measure it yourself?

It's great to hear that you're getting the pump you've wanted, hope it works well for you 🙂

And as for the uni part, I can imagine it would be hard to control the levels when your diet consists of takeaways and cider&black 😉
Good luck with the studies!
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For me it was a choice not to take up carb counting when my team mentioned it to me at first. It was a case of trying to teach an old dog new tricks and I wasn't having any of it. Over the summer I thought I may as well do it before going to uni and with my team it is a pre requisite to getting a pump aswell. I can say things have been much better since I started carb counting.

I haven't got hold of my pump yet. I start using it in April. I'll be getting a Medtronic Veo. Hopefully I'll get my PCT to fund a CGM too, fingers crossed. The pump doesn't monitor your bloods for you. You still have to go through the whole process of finger sticking. If you have a CGM that does it for you however, this is a rather big but, it is not designed to replace finger sticks. You still have to calibrate the CGM a few times a day with readings from finger sticks. It's designed as an aide more than anything.
 
Moddey said:
Hi Tom,

thanks for the advice, it was very helpful.

I find it strange how carb counting isn't encouraged more in the UK. Here it's an essential part of the treatment. The first thing we had to learn at the hospital was how to calculate the carbs and adjust the insulin accordingly. A dietician made a meal plan but we have been calculating my son's meals for so long it's already becoming a routine. I find that being careful with the amount of carbs, and also the type of carbs, really helps to keep the blood sugar levels under control.

Can I just ask, what kind of pump do you use? Do you punch in the amount of carbs? Does it monitor your blood sugar or do you measure it yourself?

It's great to hear that you're getting the pump you've wanted, hope it works well for you 🙂

And as for the uni part, I can imagine it would be hard to control the levels when your diet consists of takeaways and cider&black 😉
Good luck with the studies!
Click to expand...

Hi,
Most pumps work on the same principal really. We put the carbs in and the pump works out how much insulin to give, this is predetermined using a ratio for each meal and time of day. It also takes off insulin if the level is low and adds a correction if too high. Our particular pump is the medtronic with sensors and this checks blood every 3 minutes and sends data to the pump so we can stop hypo's and hyper's before they get too bad.

We have been carb counting since the first couple of weeks and you have to be able to carb count to use a pump as this is how it works. You can also get pumps with a remote control for little children so they can carry on playing whilst you programme the details through to the pump. I will ask about the care in the areas you mentioned and get back to you.🙂Bev
 
Moddey said:
We have been thinking of returning to Norwich or somewhere in Norfolk, as we used to live there. Another possible area was the south-west, we were looking for houses in Exeter at one point.

)
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Hi and welcome

I'm based in Norwich and have always been really pleased with the care I receive here. I'm with the Elsie Bertram clinic at the Norfolk and Norwich University hospital (http://www.nnuh.nhs.uk/Dept.asp?ID=158&q=elsie,bertra ). The staff there are excellent, very approachable and really know their stuff. I've always been able to get a nurse on the phone within a few hours (or can page them instantly if have ketones) when I've needed to speak to someone and they also run drop in sessions in the mornings so you can see someone without an appointment. The hospital trust also have a disbetes research centre in Norwich which I think is part of the reason why they are so on top of things here, seems to be quite central to the hospital agenda.

I think I've babbled on too much but do ask if you have any questions about Norwich/the hospital here!
 
hi i am grahams mum you have also think in wich school are you going to send him to my son school is excellent but not all in the uk are so understanding bye daniela xxx
 
🙂

Thanks everyone, this has all been very helpful 🙂
I wasn't aware the care was so dependant on the area, it must be tough sometimes, having to fight to get the best care.
 
aymes said:
Hi and welcome

I'm based in Norwich and have always been really pleased with the care I receive here. I'm with the Elsie Bertram clinic at the Norfolk and Norwich University hospital (http://www.nnuh.nhs.uk/Dept.asp?ID=158&q=elsie,bertra ). The staff there are excellent, very approachable and really know their stuff. I've always been able to get a nurse on the phone within a few hours (or can page them instantly if have ketones) when I've needed to speak to someone and they also run drop in sessions in the mornings so you can see someone without an appointment. The hospital trust also have a disbetes research centre in Norwich which I think is part of the reason why they are so on top of things here, seems to be quite central to the hospital agenda.

I think I've babbled on too much but do ask if you have any questions about Norwich/the hospital here!
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Thanks for your help 🙂
I lived in Norwich for 3 years while at uni, but never had to go to the N&N hospital, luckily 😉
I've only heard good things about it, though.
Good to hear that you have access to excellent care.

I miss Norwich and would love to move back there 🙂 Maybe one day...
 
Hi Moddey

Welcome to the forum. I have a 8 year old son that was diagnosed in Aug 2009. Everyone here have been a great help to me since my sons diagnosis.

Gem x
 
Moddey said:
Thanks for your help 🙂
I lived in Norwich for 3 years while at uni, but never had to go to the N&N hospital, luckily 😉
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ooh, I went to UEA too, loved it! When were you there? The hospital moved about 8 or so years ago, we have a great flashy new building now!!
 
Hi Moddey,

I think DM care is good throughout Norfolk. I live near King's Lynn and the care I get from the Queen Elizabeth Hospital is excellent. The care from my gp could be better but at least they have never rationed my test strips.
 
Hi there

I went to the UEA for my Masters! And my husband's family are all there...We go several times a year and have always loved it. The N & N also has an active research culture in diabetes care -- we found a trial there in the early days of my son's diagnosis -- very cutting edge, and in coordination with Addenbrookes in Cambridge, which is a huge and expert team...

Anyway, just to pick up something else: both Bev's boy and my boy managed to get hold of pumps well under a year into diagnosis. I think we both got them at around 7 months from diagnosis?

In the States, children are often put *straight onto* pumps when possible as a way of gaining the best control quickly. Anecdotally, this best control seems to lead to the highest retention of beta cell function for the longest time...

So if you are thinking about a pump at all, there's no such thing as too early.

Welcome to the forum, anyway!
 
Thanks for your replies 🙂

Aymes: I went to UEA between 2001-2004, did English Lit with Philosophy. The N&N had just opened then, I think.

Patricia: Thanks, Norwich is nice and it is definitely an option when/if moving back. The DM care and research sounds exceptional.
Concerning the pump, our doctor keeps brushing it off and saying "maybe later"... But I might bring it up again 🙂

Back to the mess, I'm down with the cold from hell plus we just got a new puppy, so there's plenty to do...
 
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