Advice and Guidance

[annaf1107]

Hi - I've just joined the forum as I am concerned about my dad who has got type 1 diabetes. He's had it since I was about 5 (so nearly 40 years) and all I've ever known is him managing his medication and dealing with his diet - albeit quite badly. Myself and my siblings have never really got involved as he either doesn't let us or hates being fussed over. He has never really managed his nutrition correctly and he drinks alcohol a few times a week. He is now 62!! He's had some scares in the last few years where his sugar levels have been very low and he has gone into hypo and paramedics were called, the most recent one being last night. I now feel like I need to be involved with helping him to manage things better and he has reluctantly agreed. I have asked him to arrange a review at the doctors but he doesn't like going because he says 'they nag him' but I need a starting point. I will go along with him to the review but I need to know what I'm talking about. So I'm hoping this group can help me to understand things like; what's available to him to alert him when his blood sugars are too high or low (is there a device he can wear as I'm not convinced he will regularly check with the finger prick) and if he does go into hypo, what is the best equipment for us to manage the situation? And anything else you can think of? I am convinced he needs his insulin amounts checking but that will be at the review. Any advice would be greatly appreciated.

 

[Jodee]

Hi Anna I am type 2 so will let the type 1s advise you on the gadget monitor.

Its currently difficult for our regular check because of the pandemic but here is the page which you may want to read through.

Diabetes health checks (annual review)

Diabetes can cause other health problems that can become serious if not picked up and monitored or treated in the early stages. So regular diabetes health checks – sometimes called your yearly or annual review – are part of your routine NHS treatment. What diabetes health checks should I be...

www.diabetes.org.uk

 

[Bruce Stephens]

There's a summary of technology available: https://www.diabetes.org.uk/guide-to-diabetes/diabetes-technology

And here's another, https://www.diabetes.org.uk/resources-s3/2019-11/diabetes-uk-meds-and-kit-2020.pdf

CGMs measure glucose levels nearly continuously and can have alarms for low/high (including sending alerts to other people by SMS). Some insulin pumps can connect with CGMs and protect against hypos (by automatically reducing or stopping insulin). Unfortunately they can be tricky to get from your local CCG (the criteria are quite strict).

Another thing to ask about is education: guidance for diabetes has changed a lot in 40 years (which is roughly how long I've been diagnosed). DAFNE is the major training course (but sometimes CCGs will offer similar but differently named things). If he hasn't been on one, he ought to be eligible. (Though the virus has caused obvious problems in delivery.)

 

[annaf1107]

Hi Anna I am type 2 so will let the type 1s advise you on the gadget monitor.

Its currently difficult for our regular check because of the pandemic but here is the page which you may want to read through.

Diabetes health checks (annual review)

Diabetes can cause other health problems that can become serious if not picked up and monitored or treated in the early stages. So regular diabetes health checks – sometimes called your yearly or annual review – are part of your routine NHS treatment. What diabetes health checks should I be...

www.diabetes.org.uk

Thank you so much Jodee, I will certainly take a look at the link you've kindly provided. Anna 🙂

 

[Inka]

If he goes hypo and is conscious, then he needs some fast-acting sugar/glucose. Dextrose tablets are good, jelly babies, full sugar Coke or Lucozade. Then follow this with some longer-acting carbs eg a slice of bread, a digestive or two. If he’s not conscious, then do not try to feed him anything (although you could possibly try rubbing some honey on the inside of his cheek). He’ll need medical help if he’s unconscious.

If he’s reluctant to go on a DAFNE course, there’s an online version called BERTIE that he could do. I’d also be asking him if he’s aware when his blood sugar is dropping too low as some people can lose their awareness of hypos over time.

If he’s worried about you “nagging”, try to phrase things in an encouraging way not an accusing way. Supporting your dad in eating well, counting carbs and testing frequently should help his control.

 

[annaf1107]

There's a summary of technology available: https://www.diabetes.org.uk/guide-to-diabetes/diabetes-technology

And here's another, https://www.diabetes.org.uk/resources-s3/2019-11/diabetes-uk-meds-and-kit-2020.pdf

CGMs measure glucose levels nearly continuously and can have alarms for low/high (including sending alerts to other people by SMS). Some insulin pumps can connect with CGMs and protect against hypos (by automatically reducing or stopping insulin). Unfortunately they can be tricky to get from your local CCG (the criteria are quite strict).

Another thing to ask about is education: guidance for diabetes has changed a lot in 40 years (which is roughly how long I've been diagnosed). DAFNE is the major training course (but sometimes CCGs will offer similar but differently named things). If he hasn't been on one, he ought to be eligible. (Though the virus has caused obvious problems in delivery.)

Bruce, this is great - thank you so much. Yes, dad was diagnosed almost 40 years ago and I'm convinced he is still using that guidance from back then. He is so stubborn too and doesn't like change but if I can do all the legwork and provide him with the nuggets of information he needs, I think he'll be more receptive. I'll have a good read through these links. Thank you 🙂

 

[annaf1107]

If he goes hypo and is conscious, then he needs some fast-acting sugar/glucose. Dextrose tablets are good, jelly babies, full sugar Coke or Lucozade. Then follow this with some longer-acting carbs eg a slice of bread, a digestive or two. If he’s not conscious, then do not try to feed him anything (although you could possibly try rubbing some honey on the inside of his cheek). He’ll need medical help if he’s unconscious.

If he’s reluctant to go on a DAFNE course, there’s an online version called BERTIE that he could do. I’d also be asking him if he’s aware when his blood sugar is dropping too low as some people can lose their awareness of hypos over time.

If he’s worried about you “nagging”, try to phrase things in an encouraging way not an accusing way. Supporting your dad in eating well, counting carbs and testing frequently should help his control.

Thank you so much Inka. Like you say, he used to recognise the hypos coming on but these days he just doesn't and he has been unconscious on more than a couple of occasions in the last few years. The BERTIE course sounds a little more promising so I will definitely look into that. Dad and I do have a good way of conversing with each other and I wouldn't attempt to patronise him but he doesn't deal with the medical experts telling him what to do (personally I think it's his resistance to change and him not wanting to face the bigger problems). However, he has agreed for me to now help him so I do think he is concerned himself now too. Thank you so much for your help and advice, it is very much appreciated. Anna 🙂

 

[Bruce Stephens]

It's probably worth mentioning a couple of other things. One is https://www.bertieonline.org.uk an online version of something like DAFNE. Also https://mytype1diabetes.nhs.uk

Of CGM-like things, FreeStyle Libre is currently prescribed to around 30% of people with Type 1 (so it's one of the easier things to get). It does not offer alarms, however, so isn't directly helpful for hypos, but the continuous information (well, every 15 minutes) that it gives together with the easy (bloodless) reading can help enormously.

 

[everydayupsanddowns]

Welcome to the forum @annaf1107

You’ve had so e great suggestions already, but I just wanted to say how great it is that you are trying to help your Dad. He is lucky to have you, but as you already realise, it’s not always easy to know how to have these conversations constructively and positively.

This is quite a useful guide of what (and what not!) to say

http://behavioraldiabetes.org/xwp/wp-content/uploads/2015/12/BDIAdultEtiquetteCard.pdf

 

[trophywench]

Doesn't he attend a hospital diabetes clinic rather than a GP for the expert advice he has needed ever since he was diagnosed?

 

[Bruce Stephens]

Doesn't he attend a hospital diabetes clinic rather than a GP for the expert advice he has needed ever since he was diagnosed?

Different places do this differently.

Where I am, people with Type 1 are not generally seen at the hospital (or by DSNs). Rather, that happens when it seems necessary for some (usually) limited time until it's not. (So a couple of years ago I was under the hospital team for a bit less than a year, but after they thought I was handling things OK again I was discharged. Obviously if I need help again I can contact them, but generally they don't expect that and my GP sees me routinely.)

(I assume newly diagnosed people are referred to the hospital team for some time.)

 

[trophywench]

Well years ago when I was diagnosed you were sent to hospital, and after that Type 1s were still always dealt with at the hospital. Flutterby still lives in Kidderminster and I think she mainly sees one of the docs who used to assist the Consultant at the hospital clinic, though the hospital is now a shadow of its former self and if you need specialist treatment you have to go to Worcester hosp and the doc works at the Health Centre in the town, which only used to be a GP practice but offers more these days. When I moved here to Coventry in 1998, I was immediately referred to UCWH originally at the old Cov & Warwick Hosp in the city, later to the newer Walsgrave site and the WISDEM Centre there and I'm still going there, except I actually attend the Diabetes Centre at the Hospital of St Cross in Rugby - I like 'small'.

I wouldn't expect ANY GP surgery to know very much at all about pumping!