Diabetes Heathcare Teams

[CathyFP]

I’m newly diagnosed with Type1 (LADA) and much of the advice here although really helpful, says to check with your diabetes health care team. I don’t really understand who this is? I have been referred to a Diabetics clinic at a local hospital but the appointment isn’t until July. Who can I get help from before then?

Also some of the diabetes sickness advice talks about testing for Ketones. I have no idea how to do this. Can you do it with a standard finger prick monitor?

Thanks

 

[Drummer]

I’m newly diagnosed with Type1 (LADA) and much of the advice here although really helpful, says to check with your diabetes health care team. I don’t really understand who this is? I have been referred to a Diabetics clinic at a local hospital but the appointment isn’t until July. Who can I get help from before then?

Also some of the diabetes sickness advice talks about testing for Ketones. I have no idea how to do this. Can you do it with a standard finger prick monitor?

Thanks

I can't help with the care problem but the normal basic meters for testing blood glucose definitely don't test for ketones, though there are ones which can - I think some are dual purpose, using different test strips, and others just for ketones - but that's not definite as it is what I recall from glancing at post by type 1s.
High ketones are often associated with feeling rather unwell with high blood glucose levels - but that is not the full picture.
I am sure more knowledgeable members will be able to give better advice, but as you are still here and had no answer, I thought I'd respond.

 

[Inka]

I’m newly diagnosed with Type1 (LADA) and much of the advice here although really helpful, says to check with your diabetes health care team. I don’t really understand who this is? I have been referred to a Diabetics clinic at a local hospital but the appointment isn’t until July. Who can I get help from before then?

Also some of the diabetes sickness advice talks about testing for Ketones. I have no idea how to do this. Can you do it with a standard finger prick monitor?

Thanks

The clinic team will be your team @CathyFP Were you misdiagnosed as Type 2 at first?

You can test for ketones with Ketostix, which are urine dipsticks. You can buy a pot for £5.

What help do you need?

 

[Proud to be erratic]

I can confirm that the 4 Sure meters accommodate both blood glucose test strips as well as (different) ketone test strips. I have no idea what the relative costs of 4 Sure strips (both types) are and my instinct is that because both types of strips don't have great shelf life once the tub or packaging is opened the advantage of an all-in-one sysyem is probably poor value. That instinct would point me towards urine dipsticks for ketone tests.

The Consultant who changed your diagnosis will be part of the new (to you) NHS Diabetes Clinic. No doubt you have or can find out the Consultant's name and a contact phone number for his/her Secretary. Armed with that info you ought to be able to get an email address for him/her, through his/her Secretary. I would send an email to this Secretary, marked for the Consultant's attention and say:

1. You (give your MRN or NHS Number) were seen on (date) and your diagnosis was changed from T2 to T1 LADA. You now have a date to be seen in clinic on ? July.

2 You are concerned that until then you are receiving no guidance or advice on how you should be managing your D in the meantime. Was this intentional, ie that you muddle on until then? OR if the 4 July date is the earliest possible option is there a Diabetes Support Nurse (DSN) Team that you can reach out to in the meantime?

3 Tell the Consultant that you feel more than a little abandoned right now.

4. [Possibly]:
If you have insulin now already prescribed you should routinely have a test meter and strips already provided and ketone testing capability. If that is not the case for you include in your email a request for those. Also ask whether you now need a Continuous Glucose Monitor (CGM) and if not could the Consultant please explain the rationale for no CGM?

There is no benefit from going in guns drawn and firing from the hip! But starting a balanced dialogue now should get the Consultant's attention and their focus on your needs which could easily result in someone joining the necessary dots and providing the necessary support before July.

Good luck; do let us know how this progresses.

 

[everydayupsanddowns]

Sorry for the confusion @CathyFP

I think people use ‘healthcare team’ as a sort of catch-all phrase, because it will depend from person to person. For some people it might simply be a practice nurse and their GP. For others it might include a hospital clinic, Diabetes Specialist Nurse, consultant, perhaps dietician. And for still others there might be additional HCPs involved - especially if there are other conditions in play and specialists involved in them!

As @Inka says, the cheapest and most readily available means of checking for ketones is to get a pot of urine strips from the chemists. Even though they aren’t as immediate or accurate as blood strips, I have always found them perfectly acceptable (as I don’t seem to create ketones as easily as some others)

 

[CathyFP]

The clinic team will be your team @CathyFP Were you misdiagnosed as Type 2 at first?

You can test for ketones with Ketostix, which are urine dipsticks. You can buy a pot for £5.

What help do you need?

Yes I was misdiagnosed as Type 2 for 2 years. Thanks for info on Ketostix.

I mainly need help with Carb counting. I am using the Carbs and Cals app but still always seem to get high blood sugar after a meal

 

[Inka]

Personally, I’m not fond of the Carbs and Cals app. I just use digital scales. I don’t like the pictures and I don’t think they’re that helpful, but that’s just me.

First question - are you sure your meal ratios (insulin to carbs) are right?

 

[CathyFP]

I can confirm that the 4 Sure meters accommodate both blood glucose test strips as well as (different) ketone test strips. I have no idea what the relative costs of 4 Sure strips (both types) are and my instinct is that because both types of strips don't have great shelf life once the tub or packaging is opened the advantage of an all-in-one sysyem is probably poor value. That instinct would point me towards urine dipsticks for ketone tests.

The Consultant who changed your diagnosis will be part of the new (to you) NHS Diabetes Clinic. No doubt you have or can find out the Consultant's name and a contact phone number for his/her Secretary. Armed with that info you ought to be able to get an email address for him/her, through his/her Secretary. I would send an email to this Secretary, marked for the Consultant's attention and say:

1. You (give your MRN or NHS Number) were seen on (date) and your diagnosis was changed from T2 to T1 LADA. You now have a date to be seen in clinic on ? July.

2 You are concerned that until then you are receiving no guidance or advice on how you should be managing your D in the meantime. Was this intentional, ie that you muddle on until then? OR if the 4 July date is the earliest possible option is there a Diabetes Support Nurse (DSN) Team that you can reach out to in the meantime?

3 Tell the Consultant that you feel more than a little abandoned right now.

4. [Possibly]:
If you have insulin now already prescribed you should routinely have a test meter and strips already provided and ketone testing capability. If that is not the case for you include in your email a request for those. Also ask whether you now need a Continuous Glucose Monitor (CGM) and if not could the Consultant please explain the rationale for no CGM?

There is no benefit from going in guns drawn and firing from the hip! But starting a balanced dialogue now should get the Consultant's attention and their focus on your needs which could easily result in someone joining the necessary dots and providing the necessary support before July.

Good luck; do let us know how this progresses.

Thanks for the advice. The consultant is actually pretty knowledgeable good and says I am doing well overall. He knows I need help with Carb counting and injecting right amounts of Insulin but says this needs to wait for my clinic appointment.

 

[CathyFP]

Personally, I’m not fond of the Carbs and Cals app. I just use digital scales. I don’t like the pictures and I don’t think they’re that helpful, but that’s just me.

First question - are you sure your meal ratios (insulin to carbs) are right?

I do use scales but how do you convert the weight in grams to no of grams of carbs?

In terms of ratio I have been told 1 unit of insulin for each 20g carbs?

 

[Inka]

You need to know the carb value of the food you’re weighing, then do the Maths to work out how many carbs in the portion you’re having. For things like pasta, I tend to have the same weight of cooked pasta each time as I know that carbs for that weight so don’t have to do any working out. Originally I looked at my carb sheet (yes, they used to give those out and they were fantastic!) and saw that 50g raw weight pasta was X amount of carbs. I then weighed 50g raw weight, cooked and drained it, then weighed it cooked. I then knew the carbs for that cooked weight, so every time I have pasta I just cook a saucepan for the family, then weigh out my portion, already knowing the carbs.

Hope that makes sense! It’s far easier than it sounds.

1 unit to 20g carbs might not be enough insulin for you. It takes some tweaking to get it right. It might be that you need 1:18g or whatever. You’ll probably also find you need different ratios for breakfast, lunch and tea.

 

[CathyFP]

Thanks sounds difficult without ‘carb sheet’

 

[Inka]

Thanks sounds difficult without ‘carb sheet’

We have the internet now. For pasta, you can look at the packet 🙂 The beauty of my carb sheet was it gave the carbs in average portions so it saved working it out yourself, but the internet, food packets and accurate scales is good. My carb sheet disappeared years ago but I use the aforementioned things to help me.

 

[Inka]

You could also work through BERTIE:

Bertie Diabetes

 

[Lucyr]

Thanks sounds difficult without ‘carb sheet’

Download any supermarket app eg the Tesco app. It contains carbs per 100g for each food, for foods from a packet it will be on the packet.

 

[Proud to be erratic]

Thanks for the advice. The consultant is actually pretty knowledgeable good and says I am doing well overall. He knows I need help with Carb counting and injecting right amounts of Insulin but says this needs to wait for my clinic appointment.

Like @Inka I don't like the Carbs and Cals app but I do still use the paperback book. I put "postit notes" on those pages where I regularly use certain food items and over time when I've found a meal choice from the book needs "tweaking" for me I keep a record of such useful extras. Particularly something like lasagne; the book provides a generic figure and our home recipe arrives at something different so that difference is recorded. Writing it down also just helps consolidate that detail.

 

[CathyFP]

I can confirm that the 4 Sure meters accommodate both blood glucose test strips as well as (different) ketone test strips. I have no idea what the relative costs of 4 Sure strips (both types) are and my instinct is that because both types of strips don't have great shelf life once the tub or packaging is opened the advantage of an all-in-one sysyem is probably poor value. That instinct would point me towards urine dipsticks for ketone tests.

The Consultant who changed your diagnosis will be part of the new (to you) NHS Diabetes Clinic. No doubt you have or can find out the Consultant's name and a contact phone number for his/her Secretary. Armed with that info you ought to be able to get an email address for him/her, through his/her Secretary. I would send an email to this Secretary, marked for the Consultant's attention and say:

1. You (give your MRN or NHS Number) were seen on (date) and your diagnosis was changed from T2 to T1 LADA. You now have a date to be seen in clinic on ? July.

2 You are concerned that until then you are receiving no guidance or advice on how you should be managing your D in the meantime. Was this intentional, ie that you muddle on until then? OR if the 4 July date is the earliest possible option is there a Diabetes Support Nurse (DSN) Team that you can reach out to in the meantime?

3 Tell the Consultant that you feel more than a little abandoned right now.

4. [Possibly]:
If you have insulin now already prescribed you should routinely have a test meter and strips already provided and ketone testing capability. If that is not the case for you include in your email a request for those. Also ask whether you now need a Continuous Glucose Monitor (CGM) and if not could the Consultant please explain the rationale for no CGM?

There is no benefit from going in guns drawn and firing from the hip! But starting a balanced dialogue now should get the Consultant's attention and their focus on your needs which could easily result in someone joining the necessary dots and providing the necessary support before July.

Good luck; do let us know how this progresses.

I can confirm that the 4 Sure meters accommodate both blood glucose test strips as well as (different) ketone test strips. I have no idea what the relative costs of 4 Sure strips (both types) are and my instinct is that because both types of strips don't have great shelf life once the tub or packaging is opened the advantage of an all-in-one sysyem is probably poor value. That instinct would point me towards urine dipsticks for ketone tests.

The Consultant who changed your diagnosis will be part of the new (to you) NHS Diabetes Clinic. No doubt you have or can find out the Consultant's name and a contact phone number for his/her Secretary. Armed with that info you ought to be able to get an email address for him/her, through his/her Secretary. I would send an email to this Secretary, marked for the Consultant's attention and say:

1. You (give your MRN or NHS Number) were seen on (date) and your diagnosis was changed from T2 to T1 LADA. You now have a date to be seen in clinic on ? July.

2 You are concerned that until then you are receiving no guidance or advice on how you should be managing your D in the meantime. Was this intentional, ie that you muddle on until then? OR if the 4 July date is the earliest possible option is there a Diabetes Support Nurse (DSN) Team that you can reach out to in the meantime?

3 Tell the Consultant that you feel more than a little abandoned right now.

4. [Possibly]:
If you have insulin now already prescribed you should routinely have a test meter and strips already provided and ketone testing capability. If that is not the case for you include in your email a request for those. Also ask whether you now need a Continuous Glucose Monitor (CGM) and if not could the Consultant please explain the rationale for no CGM?

There is no benefit from going in guns drawn and firing from the hip! But starting a balanced dialogue now should get the Consultant's attention and their focus on your needs which could easily result in someone joining the necessary dots and providing the necessary support before July.

Good luck; do let us know how this progresses.

A bit of an update on finding my ‘care team’. I had my first appointment with a diabetic nurse at a hospital diabetic clinic yesterday. It was ok but tbh I learned more about her than she learned about me as she talked so much and mostly about herself . How do I tactfully give feedback so that I get more help next time without alienating my only current source of support? Any tips anyone? Also what emergency support do most Diabetic Clinics provide? We only have a number on which to record messages that is monitored three times a week. When I queried this I was told that ‘Diabetes is a self managed condition’ that made me feel pretty much on my own although I suppose it is true.

 

[Taffyboyslim]

The local nurse practioner is not a specific diabetic nurse but between her and her colleague they provide the contact and advice

I think they are OK, they both seem very knowledgeable and they are very kind , unlike the receptionists

 

[Inka]

A bit of an update on finding my ‘care team’. I had my first appointment with a diabetic nurse at a hospital diabetic clinic yesterday. It was ok but tbh I learned more about her than she learned about me as she talked so much and mostly about herself . How do I tactfully give feedback so that I get more help next time without alienating my only current source of support? Any tips anyone? Also what emergency support do most Diabetic Clinics provide? We only have a number on which to record messages that is monitored three times a week. When I queried this I was told that ‘Diabetes is a self managed condition’ that made me feel pretty much on my own although I suppose it is true.

Did you go with a list of questions @CathyFP ? If not, I highly recommend that as then you can guide the session. Write your questions down and take a pen to jot down answers. With appointments being of limited time, I always want to make sure that I get best use of them.

Having a telephone number for the DSNs is normal. That’s what my clinic has. They normally call back the same day. If it’s something more urgent, then I phone the diabetes reception and ask to speak to a DSN. An example of ‘more urgent’ was when I needed the pregnancy DSN.

They’re quite right that diabetes is self-managed. It’s a gradual learning process. At the beginning your focus should just be on avoiding extremes as much as possible. You’ll gradually learn how to refine and improve your control.

If you haven’t got Think Like A Pancreas and the Ragnar Hanas book yet, I highly recommend you get them. I’ve had Type 1 years so I had a different book when I was diagnosed, but it was my bible and I read and referred to it a lot.

 

[everydayupsanddowns]

Good to hear you’ve been referred to a hospital clinic @CathyFP

Next time you are in contact, you might want to ask what T1 training courses they run, and when you can go one one (LADA is essentially a subset of T1, so the same intensive insulin management applies)

You can also do an e-learning version with BERTIE, the Bournemouth NHS Trust’s Dafne-equivalent course, which is available free online.

www.bertieonline.org.uk

Self managed conditions are all very well, but in the beginning you need help, instruction, and to learn HOW to manage them!

 

[rebrascora]

I don't have a named DSN that I am aware of and like yourself there is just the "helpline" number at the clinic for "emergencies" where you leave a message and generally you get a call back in a day or two. I find this forum is more knowledgeable and more prompt for getting advice and support.
As regards appointments and keeping them focused, I second the advice of going with a list and check things off as you cover each point and tell the nurse at the start that you have a list of questions. I compile my list over the weeks preceding the appointment as things crop up or occur to me.

You can ask to be referred to a diabetes dietician for help with carb counting and I found the dietician had more time and she did actually give me her mobile number although I never needed it, I appreciated the reassurance of having it. It turned out that she was also one of the DAFNE educators for my area, so well qualified to provide support.

Definitely ask for education. I had an initial appointment with the dietician and then a day with her for basic carb counting along with another newly diagnosed guy and it was really helpful and beneficial to actually engage with him as much as the actual course content. I then had my DAFNE course about 8months after diagnosis, which was a week long course and I gained a lot of confidence from that course.... again spending time with other Type 1s and sharing experiences was incredibly helpful and comforting even though we all had quite different backgrounds and issues to deal with. I guess in the same way that this forum works so well. Shared experiences are so useful in understanding the condition.

Really sorry that your appointment fell short of what you had hoped for. I think my first couple of appointments with the consultant were rather like that (I didn't get appointments with a DSN) as I struggled to get my point across, probably because I didn't fully understand things then and I came away feeling a bit disappointed and let down. I still have roughly annual appointments with the same consultant and we get on great now, so I think some of it was just forging a working relationship and me not knowing enough to explain what I meant. I don't think I would have managed nearly so well if I hadn't had this forum to lean on regularly during that time, so I would urge you to come to the forum as regularly as you can and ask your questions and seek the reassurance you need here, but obviously use the clinic helpline too, particularly for dose adjustment advice.