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Improvement
- Thread starter Hightonel
- Start date
- Status
Which organisation? Would help us understand what’s helpful to you?
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
When you say "we" in the sentence above, who or what exactly are you referring to?
My GP practice team have very little to do with my diabetes care. They are more of a frustration than a help.
My diabetes care is provided by the local specialised diabetes clinic at the hospital through an annual review where I can ask questions and they can review my blood results.
In addition to this, without looking at the information from the clinic, my GP surgery also invites me for an annual review but the DSN appears to know very little about Type 1 diabetes.
My preference would be not to be invited to this extra review from which I gain no value.
Thank you for your reply.
Have you seen the young diabetes press release a couple of weeks ago re funding, might be useful materials coming your way that can apply to all diabetics in planning appointments and important concerns around mental health and eating disorders.
Also helping all working age diabetics have important conversations with their employers about essential appointments.
This is the press release https://www.england.nhs.uk/2023/08/...mme-to-transform-diabetes-care-for-under-40s/ your local trusts/CCG should be able to guide further as to when funding will be available and how it will be delivered etc , was really interesting hearing the plans, there’s a clip on BBc radio sounds about it too.
https://x.com/drwfdiabetes/status/1696463730614079621?s=42&t=0_nzAlX-KEPCBJEWhRuilw it’s about 50 minutes in possibly a little further.
Hoping DUk team see this as no doubt they may have ideas even if just to complete the support materials survey higher up or share the podcast link to your colleagues as DUk are finding so many interesting initiatives be it research or on stigma along side dietary assistance to help us all, the research astounds me still and has since starting volunteering about 18 months ago, the news page of the website is so useful for updates on all sorts of issues including the professional conference last April. Well done for reaching out to look into the issues we face!
It has taken my gp practice over 12 months to decide to put me into Libre. This has been a game-changer and now I am seen by a practice nurse who actually understands diabetes and my care has completely changed from box-ticking to dealing with the problem. I'd say some consistency in care would have been helpful
Docb
Moderator
- Relationship to Diabetes
- Type 2
A bit left field I know but I would get rid of all the labels - T1, T2, 3c, MODY, LADA and whatever. The reason is very simple. To try and stop the medics shoving people into a box and then treating in the manner ascribed for the box whether it is a comfortable fit or not.
For example, I am a moderately fit, average weight, 77 year old who's system for some reason or other cannot cope with lots of carbohydrate. Is it sensible to put me in the T2 box along with an overweight, pizza eating, 40 something couch potato (I know it's a stereotype but you will get my point) and use the same treatment pathway if all the medic sees is that we both have a T2 diabetes label on a computer screen.
For example, I am a moderately fit, average weight, 77 year old who's system for some reason or other cannot cope with lots of carbohydrate. Is it sensible to put me in the T2 box along with an overweight, pizza eating, 40 something couch potato (I know it's a stereotype but you will get my point) and use the same treatment pathway if all the medic sees is that we both have a T2 diabetes label on a computer screen.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
I think at GP level, the main concerns are probably ....
1.That GPs and practice nurses need to keep an open mind at diagnosis about whether it could be Type 1 or Type 2 or Type 3c or some other Type that you are presented with. There are a lot of people who are misdiagnosed as Type 2 because many GPs believe that Type 1 only exhibits in children and young people, so that if you are a mature adult, it must be Type 2. Similarly, being overweight does not preclude you from being Type 1.
2. Type 2s can gain a lot of benefit from home BG testing and telling them not to test, even when they are self funding is not helpful at all. We get lots of newly diagnosed coming to the forum after being told not to test, or actively discouraged from testing, when with the right testing strategy it can be helpful and motivating and in fact key to making the necessary dietary and lifestyle changes. I appreciate that GP practices are under financial pressure and may not be able to fund testing for all, but please do not discourage testing by those who are keen to engage with their diabetes management.
3. Encourage rather than blame or criticize. With the right information and support most people can improve their diabetes management and many can push it into remission. Type 2 doesn't have to be progressive but good dietary advice is important and the "Eatwell" plate simply doesn't hack it for most Type 2s, so don't suggest swapping to brown/wholemeal options as that really has minimal impact. Less carbs is the answer not a change of colour. The increased fibre in brown/wholemeal products has very little beneficial effect compared to reducing the total amount of carbs you eat and it is all carbs not just sugar. Unfortunately some of the outsourced courses for Type 2 are still based on the "Eatwell Plate" and this is not helping people.
Having to think about every single thing you eat for the rest of your life is not easy. Many people here feel really demoralized when they return from a diabetes review, even if their levels have reduced, their HCPs rarely give them the praise, acknowledgement of effort and encouragement they need to keep going.
4. Don't reach for the prescription pad straight away every time. Metformin caused a lot of people digestive upheaval and many don't even need to be prescribed it. Offer people the option to have a 3 month period of lifestyle changes and advise them to come to this forum for support with that. Obviously, if levels are excessively high then yes medication may be appropriate, but an HbA1c in the 50s -90s can often be dropped back down to the normal or pre diabetes range through dietary means with the right advice. Low carb eating is more powerful than most oral meds, so give people the option to try that first. If they want medication fair enough, but give people a choice and stress that lifestyle changes are necessary even with medication.
5. Stop pushing the low fat mantra that we have been bombarded with all our lives. Fat helps people to feel full. Carbs make them feel hungry. If you cut the carbs and eat more fat, many of us have found that we are less hungry and eat less overall and lose weight. Food tastes good with fat so we don't feel deprived and it therefore is more sustainable.
I felt really guilty going against the low fat advice of my nurse for many moths after diagnosis, but I am fitter and healthier for eating more fat and cutting right down on my carbs (not keto....I am about 60-90g carbs a day) Going low carb, higher fat has improved or stopped number of other quite serious health conditions that I had suffered for years including acute and chronic migraines, poor skin/eczema and asthma is improved, joint pain is improved and I sleep better. Interestingly, despite eating a lot more fat in general and particularly saturated fat, my cholesterol is down. I have refused statins as I am only just above the TC level of 4 that triggers that prescription pad.
6. For those of us who are insulin dependent please look at your repeat prescription system. Being told that we can't have medication that keeps us alive because we need a review causes an immense amount of stress, especially when trying to get an appointment to see someone to get that review is a huge challenge in itself at many surgeries.
I am actually one of those misdiagnosed Type 1s that I mentioned in 1. above but in some respects starting out with a Type 2 diagnosis and going on a low carb diet to try to push the Type 2 into remission, has helped me find better health in all respects, so that I now continue to eat low carb and higher fat because it makes sense for my general health and wellbeing despite the fact I use insulin and could eat normally and whilst difficult at first, 4.5 years down the line it is easier and with increased fat, sustainable long term. I would not necessarily recommend it for all Type 1s but it is certainly helpful for many Type 2s.
Sorry for rabbiting on such a lot, but there are so many issues around diabetes diagnosis and treatment that are sadly all too common across the country and we so often see newly diagnosed patients who are lost and scared and overwhelmed coming to the forum with little or no information or the wrong information, that it is quite nice to have an opportunity to vent some of them. So pleased you have come and asked.... I assume you are a Health Care Professional yourself with a view to finding what you can do to improve things?
1.That GPs and practice nurses need to keep an open mind at diagnosis about whether it could be Type 1 or Type 2 or Type 3c or some other Type that you are presented with. There are a lot of people who are misdiagnosed as Type 2 because many GPs believe that Type 1 only exhibits in children and young people, so that if you are a mature adult, it must be Type 2. Similarly, being overweight does not preclude you from being Type 1.
2. Type 2s can gain a lot of benefit from home BG testing and telling them not to test, even when they are self funding is not helpful at all. We get lots of newly diagnosed coming to the forum after being told not to test, or actively discouraged from testing, when with the right testing strategy it can be helpful and motivating and in fact key to making the necessary dietary and lifestyle changes. I appreciate that GP practices are under financial pressure and may not be able to fund testing for all, but please do not discourage testing by those who are keen to engage with their diabetes management.
3. Encourage rather than blame or criticize. With the right information and support most people can improve their diabetes management and many can push it into remission. Type 2 doesn't have to be progressive but good dietary advice is important and the "Eatwell" plate simply doesn't hack it for most Type 2s, so don't suggest swapping to brown/wholemeal options as that really has minimal impact. Less carbs is the answer not a change of colour. The increased fibre in brown/wholemeal products has very little beneficial effect compared to reducing the total amount of carbs you eat and it is all carbs not just sugar. Unfortunately some of the outsourced courses for Type 2 are still based on the "Eatwell Plate" and this is not helping people.
Having to think about every single thing you eat for the rest of your life is not easy. Many people here feel really demoralized when they return from a diabetes review, even if their levels have reduced, their HCPs rarely give them the praise, acknowledgement of effort and encouragement they need to keep going.
4. Don't reach for the prescription pad straight away every time. Metformin caused a lot of people digestive upheaval and many don't even need to be prescribed it. Offer people the option to have a 3 month period of lifestyle changes and advise them to come to this forum for support with that. Obviously, if levels are excessively high then yes medication may be appropriate, but an HbA1c in the 50s -90s can often be dropped back down to the normal or pre diabetes range through dietary means with the right advice. Low carb eating is more powerful than most oral meds, so give people the option to try that first. If they want medication fair enough, but give people a choice and stress that lifestyle changes are necessary even with medication.
5. Stop pushing the low fat mantra that we have been bombarded with all our lives. Fat helps people to feel full. Carbs make them feel hungry. If you cut the carbs and eat more fat, many of us have found that we are less hungry and eat less overall and lose weight. Food tastes good with fat so we don't feel deprived and it therefore is more sustainable.
I felt really guilty going against the low fat advice of my nurse for many moths after diagnosis, but I am fitter and healthier for eating more fat and cutting right down on my carbs (not keto....I am about 60-90g carbs a day) Going low carb, higher fat has improved or stopped number of other quite serious health conditions that I had suffered for years including acute and chronic migraines, poor skin/eczema and asthma is improved, joint pain is improved and I sleep better. Interestingly, despite eating a lot more fat in general and particularly saturated fat, my cholesterol is down. I have refused statins as I am only just above the TC level of 4 that triggers that prescription pad.
6. For those of us who are insulin dependent please look at your repeat prescription system. Being told that we can't have medication that keeps us alive because we need a review causes an immense amount of stress, especially when trying to get an appointment to see someone to get that review is a huge challenge in itself at many surgeries.
I am actually one of those misdiagnosed Type 1s that I mentioned in 1. above but in some respects starting out with a Type 2 diagnosis and going on a low carb diet to try to push the Type 2 into remission, has helped me find better health in all respects, so that I now continue to eat low carb and higher fat because it makes sense for my general health and wellbeing despite the fact I use insulin and could eat normally and whilst difficult at first, 4.5 years down the line it is easier and with increased fat, sustainable long term. I would not necessarily recommend it for all Type 1s but it is certainly helpful for many Type 2s.
Sorry for rabbiting on such a lot, but there are so many issues around diabetes diagnosis and treatment that are sadly all too common across the country and we so often see newly diagnosed patients who are lost and scared and overwhelmed coming to the forum with little or no information or the wrong information, that it is quite nice to have an opportunity to vent some of them. So pleased you have come and asked.... I assume you are a Health Care Professional yourself with a view to finding what you can do to improve things?
nonethewiser
Well-Known Member
- Relationship to Diabetes
- Type 1
Only thing gp practice does is take bloods & issue prescriptions, under hospital clinic for my diabetes & prefer it that way, better expertise there.
Tdm
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
I found i was getting really rapid drops in blood sugar when i had active bolus insulin in my system, especially in the first hours. I did not see this effect if i had not taken bolus insulin.
Not one, but 2 dsns said this was due to too much basal and said i should reduce it, which did not meet yhe observed data, and which didn't work, cos, as i told them, it wasn't a basal issue. They also started me on 5 times the basal i needed (before i got cgm and me having little hypo awareness and living alone), adjusted it down too slowly, and left it too high (i was on libre towards the end so no real excuse for this). Bolus insulin was also far too high. They also told me not to do an air shot when injecting. They also told me my 24 hr basal lasted 3 days. And when i asked for tips how to reduce post meal spike into 15/16 they said it was 'ok' as they 'came down again' (i now rarely go over 10) and did not offer any tips. I was told off for walking after meals despite this being very effective, and for getting too good control of my blood sugars. (Due to reading 'think like a pancreas' and youtube, not them). They gave me no means to test for ketones, and when i brought this up then prescribed me strips without a meter to read them. When i got a novopen for my bolus insulin, they managed to somehow send me 3 (a spare i understand...). And the fuss i had to kick up to get the sickday rules! At this point i realised i would just do it myself, with google, thank you very much!
I requested a move elsewhere and am happy with my new team
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