DUK conference - Self Management

[IanD]

Hana & I joined the 1-day conference.
On arrival we were offered choc digestives & custard creams with our tea.
I had previously phoned regarding the lunch provided, & was told sandwiches, so I explained I was diabetic & did not eat bread. They still let me in.

There's a lot to report, so I'll summarise some points.

1. A major problem is the emotional impact of diagnosis - diabetics are often observed to be depressed. I reported that when I was diagnosed, Redgrave was winning gold medals, so diabetes didn't seem to be much of a problem ... but Dr assured me that I was now in line for heart attack, stroke, kidney disease, blindness, amputation .... & helpfully computed my probability of a heart attack at 25% :evil: Was I depressed :?: I left the surgery in a state of shock that lasted months

Mine is a common experience, which needs to be addressed. Specialist psychological & emotional support is needed. Then self management is more likely to be successful.

2. The ongoing need is for a care plan & progressive care planning. Patients may be given information & diet plans on diagnosis & the care then provided is medication based on annual HBA. Self measurement is commonly discouraged.

After diag I was given a one day programme of talks by nurse, dietitian, pharmacist, podiatrist, & prescribed test strips. I was also put in touch with the local support group. (Hounslow.) I will endeavour to report back to them. Meetings I have been to have not been very helpful.

3. Local patients meeting & sharing.

I pointed out that I do not know of any other diabetics in the practice. We are assured on diagnosis that our condition is progressive - diet/exercise > medication > insulin > complications. We have no opportunity to compare notes with other patients.

Others there were members of specific & useful support groups, including parents & schools.

[My Dr was impressed by my recovered mobility I achieved by a reduced carb diet. I offered to share information with other patients in the hope that my experience would be helpful. It hasn't happened.]

I shall suggest to the Dr a surgery meeting for patients to discuss problems & solutions.

4. Publicity of the needs of diabetics.
Representations to PCTs, MPs, local magazines, local radio, etc, are possibilities for action.

5. Several of us pointed out the counter-productive dietary info & the need for DUK & professionals to listen to patients, & learn from our experience. In particular the scary warnings in the very latest DUK diet booklet were pointed out - "we NEED glucose from carbs for brain function, so carbs should comprise half our diet."

There seems to be no mechanism nor procedure even for DUK to learn from its members.

Bed time.

 

[IanD]

As a 70 year old T2 for 10 years, & having progressed (following professional advice)
from diet
to metformin
to complications (disabling muscle pains & background retinopathy, chronic tiredness)
(& following low carb advice from forum contributors)
to carb reduction
freedom from pain
to normal activity

My self management plan is
carb reduction & exercise; taking 3 metformin a day; singing & playing music
monitor BS overnight & once or twice more through the day
monitor weight (stable at BMI 24.5-25)
awareness of general health

The results are:
freedom from pain (though I do have occasional problems, currently leg discomport through travelling by train & tube to the DUK conference)
stable retinopathy
active life
no depression
greatly reduced tiredness

 

[hanadr]

Ian and I have met before and we can work as an effective team. We discovered a couple of other carb controllers. one of whom was a very large, but utterly charming lady, who had been advised by an NHS dietician to reduce her carbs to lose weight and improve control. Is this Mrs Pugwash? The other was a nurse, a pumper.
We were asked, in groups to prepare a presentation to someone like the PCT, to persuade them to fund self management. This produced some good Stuff. One of the proposals is being published to us delegates and we can pass it on when it comes. It was all about how much money they can save.
I too don't eat sandwiches, but I did eat the fillings of a couple to go with my garden salad.
To my horror I even saw people sugaring their coffee; and several ate fruit like there was no tomorrow. I confess to 6 grapes over the whole day.
I've been to a number of these events so far and find one of the most useful things is to talk to other people coping with diabetes of either type. sometimes I can help them and sometimes they help me. I've got to know some of the regulars.
there was a psychologist there who put an interesting slant on the strips issue, Reminding us that the feedback from good results is very useful in successful control. That's one I plan to use. There was a couple there who lobby MPs and get some good support that way. It was a very full day with an excellent facilitator running it
Hana

 

[IanD]

An important aspect of self management is to be aware of our bodies & our general health.

It is too easy to think, "I am getting older" or to accept, "what do you expect at your age?"

I did - I bought larger size trousers & shirts, & accepted increased tiredness. John Peel did, until he was taken to hospital with diabetes. Some will accept stronger glasses, though a competent optometrist will see the signs of diabetes.

We can manage our health to a great extent, & our aim should be to stay healthy, even with diabetes. We can make the supposed "inevitable progression" as slow as possible, rather than accept it.

With diabetes, control by diet & exercise is a much better option than control by ever stronger medication, though of course medication is a valuable recourse. My Dr always advises, "we could prescribe ... but you could try ... See how you go."

 

[graham64]

Hi Ian,
I'm still a member of DUK and pay my dues though they are of no help to me, you Hana and others who work so hard on trying to change their starchy carb advice is probably the only reason I stay a member.

Thanks
Graham

 

[IanD]

Please folk - what is YOUR strategy for "self management" :?:

 

[IanD]

I reported back to the local support group, I found someone who also was horrified at the latest "Healthy Eating" booklets for T1 & T2. He has already queried them & had the booklet in his hand while we were talking. We had a very long phone conversation.

He has realised that there is no way of teaching DUK the wisdom gained from patients' experience.

They trot out the "received wisdom party line" so often that they believe it, & dare not say anything other than, "If reduced carbohydrate works for YOU, do it, but WE cannot recommend other than our standard 'lots of starchy carbohydrate' line."

How often does a lie have to be repeated before it becomes the truth :?: :twisted: :?:

I have been encouraged now to represent the support group, & get more involved. PTL!

 

[Katharine]

My strategy for managing my son's diabetes is to learn from the people who know how to get proper control of diabetes ie successful patients.

 

[hanadr]

Katharine
I'm not surprised you have successssful patients
I bet you don't try to make them change what works
Hana

 

[IanD]

This is their report received today.

 

[Katharine]

Thanks Ian. That does sound a true reflection on what would make a positive difference to the people with type two diabetes.

 

[IanD]

Now the DUK Balance mag tells us that 800,000 diabetics are not achieving recommended BG levels & are at risk of serious health problems. They repeat the targets for adult T2 - 4-7 before meals, below 8 after.

How those targets can be achieved with a 50% carb diet is unclear ....

The case for really really positive self-management assisted by informed HPs is evident.

 

[cugila]

Now the DUK Balance mag tells us that 800,000 diabetics are not achieving recommended BG levels & are at risk of serious health problems. They repeat the targets for adult T2 - 4-7 before meals, below 8 after.

Hi Ian.
I totally agree with what you have said.

However the figures that DUK are quoting are NOT the accepted guideline numbers (NICE). The maximum post prandial number should be 8.5 mmol/l NOT 8.

It seems DUK themselves don't know what the left and right hands are doing.....see page 69 of the magazine...Blood Glucose targets. The correct ones !!

 

[ally5555]

Who knows what is going on there - they are certainly out of touch. I belong to the diabetes group as part of the british dietetic association and carb counting is the norm - not this wooly advice they are giving.

Ian - there are many diabeteics who will never manage their diabetes because they dont care - I find it very frustrating but that is life i am afraid - bit like smoking!

 

[IanD]

Who knows what is going on there - they are certainly out of touch. I belong to the diabetes group as part of the british dietetic association and carb counting is the norm - not this wooly advice they are giving.

Ian - there are many diabeteics who will never manage their diabetes because they dont care - I find it very frustrating but that is life i am afraid - bit like smoking!

Ally, Please don't try & make a case from those who don't care.

I care - & I believed the starchy carb line - until the predicted complications set in.

Trouble is, diabetics who care DO seek advice from DUK & HPs & they get misinformation that is "proved correct" simply because they predict progressive deterioration which inevitably occurs if we follow their diet recommendations :evil: That progression does NOTHING to suggest to them that that advice they give is WRONG.

This thread is about self-management, obviously for people concerned about their health. That surely counts in everybody on this forum.

 

[ally5555]

Ian - the problem is that trying to get people to self manage is an up hill struggle and figures for amputations etc do not reflect these type of people. Forums such as this often do not help people they need one to one time.

It is your opinion that all diabetics get the wrong treatment -0 clearly that is not the case on here.


That is where we should maybe be spending more money because i am afraid it is those who do not care are skewing the stats.

I also think that we need to plough more money into the pyschological side - i am currently workin with a psych to set up some sessions for diabetics as we believe it will effect the long term health of pts.

 

[sugarless sue]

Forums such as this often do not help people they need one to one time.

Do not agree with this statement, Ally. Read some of the posts, we have helped many members understand their diabetes and, by doing so , helped them empower themselves to get help and tailor their treatment to their best advantage. They may not get face to face one to one but they certainly get individual attention and as accurate info as we, (The Mods) can give them.

 

[ally5555]

apologies meant to say some people !

 

[IanD]

Ian - the problem is that trying to get some people to self manage is an up hill struggle and figures for amputations etc do not reflect these type of people. Forums such as this often do not help such? people they need one to one time.

It is your opinion that all diabetics get the wrong treatment -0 clearly that is not the case on here.
No. We get the wrong advice from HPs about diet, not treatment. The diet advice aggravates the progressive nature of diabetes.

That is where we should maybe be spending more money because i am afraid it is those who do not care are skewing the stats.
As we are all told in effect that a high carb diet is needed for BG control, it is that advice that is skewing the stats.

I also think that we need to plough more money into the pyschological side - i am currently workin with a psych to set up some sessions for diabetics as we believe it will effect the long term health of pts.
I fully agree with you here. Even the local Hounslow support group can only manage monthly meetings with a talk on a specific topic. My Dr, who I consider to be excellent, & prepared to extend a consultation (even though we moan about waiting 30-59 minutes!) is primarily concerned to prescribe or refer, rather than consider lifestyle & diet.

You will see above that I (& many newly diag people) suffer shock & depression. That needs support. I got support from my mother who had a job in the 30s cooking for a diabetic, & later for a colleague of my father's.

You will see from other threads that members of this forum do provide support & encouragement in as personal a way as possible on a forum. You will also see that emotional support was highlighted in the conference. I've never (knowingly) met a psychiatrist. Would they provide the needed emotional support? Would a "diabetics anonymous" or "diabetes watchers" type support group meeting frequently be a positive approach? In effect, that is what this forum acts as.

 

[ShyGirl]

It's a strange subject.