Help me make a change

[Jill the tt]

Hi All,
I've not posted on here for a very long time, but I do read. I reversed my diabetes just over a year ago.

I have a question which I hope with enough answers I can try to help with making a change, even small changes are steps forward. having read about diabetic burnout I just had the thought has anyone had the family given any education by a professional about diabetes, how much is support lacking from our health team. I mean to take this up with trainers for diabetic professionals if I can give them numbers it would be beneficial, I don't know if this is the right place to post, I hope you can I know you are great people on here and all striving to make things better and keep everyone informed, I know being on here saved me many times in the past. Thank you Jill

 

[SockFiddler]

Hey, Jill - welcome back!

Do you mean information given to families of diabetics, so that when burn-out strikes, the family acts as a safety net to encourage and get someone back into managing themselves properly? Are you talking about a formal training course for family members to sit and attend, or printed hand-outs and web links?

(Assuming that's what you mean) I think it's a fab idea that will certainly support people through burn-out phases, but a terribly expensive one for the NHS to implement. I completely agree that families and friends need to understand more about diabetes - of all kinds - but the NHS can't afford to support families of patients in any situation (families of children undergoing surgeries aren't given as much as a hot meal while they wait), no matter the potential savings as an outcome.

I think, though, there might be scope in targeting the conversations that happen at diagnosis. It's at that moment that new patients could be told to develop a support network, signposted to places like this and local support groups and given (actually) useful links to help them not only change their habits (as required - often people are living perfectly happy, healthy lives) but to inform them as to why.

Changing the focus of the diagnosis conversation will cost nothing at all and will encourage a mentality of self-management with the support of loved ones. Too, too often on this forum, we read reports of people being hit with a diagnosis and a leaflet, prescribed tablets they don't understand and told to lose weight / get some exercise / change their diet without any explanation as to why those things are important - or even what diabetes is.

I don't know if there's any kind of 3rd Sector organisation offering education, support and information to families of people with diabetes. But it's certainly worth considering given the value and usefulness of sites like this one (which, to be fair, enables people with diabetics, but we only occasionally meet their relatives and close friends here).

Really interesting stuff, Jill. I'd be curious to see where this goes. Especially as I'm starting to look around for my next project, too...

 

[Guzzler]

Sorry to sound negative but the first step should be to reeducate HCPs or *some* HCPs on the merits of new and not so new approaches to treatment/advice given to the newly diagnosed. There's no point in giving second rate advice to everyone who may wish to support a newbie.

 

[Jill the tt]

Hey, Jill - welcome back!

Do you mean information given to families of diabetics, so that when burn-out strikes, the family acts as a safety net to encourage and get someone back into managing themselves properly? Are you talking about a formal training course for family members to sit and attend, or printed hand-outs and web links?

(Assuming that's what you mean) I think it's a fab idea that will certainly support people through burn-out phases, but a terribly expensive one for the NHS to implement. I completely agree that families and friends need to understand more about diabetes - of all kinds - but the NHS can't afford to support families of patients in any situation (families of children undergoing surgeries aren't given as much as a hot meal while they wait), no matter the potential savings as an outcome.

I think, though, there might be scope in targeting the conversations that happen at diagnosis. It's at that moment that new patients could be told to develop a support network, signposted to places like this and local support groups and given (actually) useful links to help them not only change their habits (as required - often people are living perfectly happy, healthy lives) but to inform them as to why.

Changing the focus of the diagnosis conversation will cost nothing at all and will encourage a mentality of self-management with the support of loved ones. Too, too often on this forum, we read reports of people being hit with a diagnosis and a leaflet, prescribed tablets they don't understand and told to lose weight / get some exercise / change their diet without any explanation as to why those things are important - or even what diabetes is.

I don't know if there's any kind of 3rd Sector organisation offering education, support and information to families of people with diabetes. But it's certainly worth considering given the value and usefulness of sites like this one (which, to be fair, enables people with diabetics, but we only occasionally meet their relatives and close friends here).

Really interesting stuff, Jill. I'd be curious to see where this goes. Especially as I'm starting to look around for my next project, too...

thanks for the welcome. Yes I am looking at the lack of support (not intentionally ) where family just don't understand, since joining Linkedin I have made connections with people who train the professionals and are in a position to make changes also connected with the diabetic journal, if I publish on there I need to have firm evidence there is a need, I know how the emotional side is and how hard it can be. The link I've put is from the first course I did, I'm part way through another and going on a master class in positive psychology early next year. This is still early days for me I don't have a website yet. My diabetic nurse has put up a flyer in the surgury about me and says there is a huge lack of support. So I've come here for help so I can try to make some changes, any suggestions would be a great help Thanks Jill

 

[Jill the tt]

Sorry to sound negative but the first step should be to reeducate HCPs or *some* HCPs on the merits of new and not so new approaches to treatment/advice given to the newly diagnosed. There's no point in giving second rate advice to everyone who may wish to support a newbie.

I think you've missed my point, support is so important, it's not about second rate advice that in itself would be pointless. thanks for your input Jill

 

[Resurgam]

The point is that if there were HCPs able to influence family - how many people would end up in the care of kind and well meaning people giving them tablets which affect their memory and general well being (as the Metformin and Atorvastatin did for me) with the full approval of the nearest and dearest, having been assured that it was all for the best?
A lot needs to change before I'd consider it safe for my doctor to have access to family members.

 

[Chook]

Its a difficult one this... because I don't think the people who actually have diabetes are given enough information at diagnosis - so it would be strange, therefore, if their friends and family were advised on how to support them to lower their BG which, to me, is the most important thing. Perhaps it might be more useful to give patients advice on how to ask their loved ones for support.

I have suffered with burn out twice - both times before I found this forum. My husband has always been supportive no matter what I do and nowadays understands about the affect of carbs on BG because I have explained its importance to him - but I can't imagine for one second him attending at my GPs surgery for information in how to support me if they persist on pushing the high carb diet that they try to persuade me in to each year. He relies on me telling him how much and what kind of support I need. He also knows to watch out for burn out. Luckily (because of this forum) I now know how to cope with my T2 and I'm able to pass on that information to him BUT when I relied on the information I received from health care professionals then, of course, he could't support me in any meaningful way that would reduce my BG.

I'm sure that my husband would be willing to attend a training session on how to support me but he would be very frustrated if that training session wasn't relevant to my low carb way of eating.

 

[Jill the tt]

The point is that if there were HCPs able to influence family - how many people would end up in the care of kind and well meaning people giving them tablets which affect their memory and general well being (as the Metformin and Atorvastatin did for me) with the full approval of the nearest and dearest, having been assured that it was all for the best?
A lot needs to change before I'd consider it safe for my doctor to have access to family members.

thanks for the input but not what I meant Jill

 

[Jill the tt]

Its a difficult one this... because I don't think the people who actually have diabetes are given enough information at diagnosis - so it would be strange, therefore, if their friends and family were advised on how to support them to lower their BG which, to me, is the most important thing. Perhaps it might be more useful to give patients advice on how to ask their loved ones for support.

I have suffered with burn out twice - both times before I found this forum. My husband has always been supportive no matter what I do and nowadays understands about the affect of carbs on BG because I have explained its importance to him - but I can't imagine for one second him attending at my GPs surgery for information in how to support me if they persist on pushing the high carb diet that they try to persuade me in to each year. He relies on me telling him how much and what kind of support I need. He also knows to watch out for burn out. Luckily (because of this forum) I now know how to cope with my T2 and I'm able to pass on that information to him BUT when I relied on the information I received from health care professionals then, of course, he could't support me in any meaningful way that would reduce my BG.

I'm sure that my husband would be willing to attend a training session on how to support me but he would be very frustrated if that training session wasn't relevant to my low carb way of eating.

thanks for the input, I wonder if women find it easier to say how they need support, the trainers I've been dealing with are teaching low carb, there is a lack of support for emotions, I believe there are things that can be done to improve things, I'm trying to help and your input is very much appreciated. I directed a woman to this forum because her husband was in hospital with newly diagnosed diabetes ( met her in the butchers) she was panicking about food, I told her about low carb, it just struck me how many people panic about how to help and want to try and make sure the right help gets out there, this is a huge task but I want to try, it's not about forcing tablets to be taken or made to eat certain things, as we know here not one thing suits all, it's about understanding and whole hearted care Thanks Jill

 

[Resurgam]

thanks for the input but not what I meant Jill

Yes, I did realise that - so far all the professional people involved in my diabetes care have been a total disaster, I'd not want to let them loose on anyone in my family in case they were able to influence them with the same sort of misinformation I was given.
Thankfully my HCPs are totally disinterested in my mental state.