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The top 10 gripes of those with diabetes

Discussion in 'Diabetic Foot & Wound Management' started by admin, Nov 2, 2006.

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  1. admin

    admin Administrator Staff Member


    Members do not see these Ads. Sign Up.
    This just arrived in my inbox from DiabeteHealth:

    GRIPE #1: People Giving You Unsolicited or Wrong Advice

    GRIPE #2: Feeling Lost and Alone

    GRIPE #3: Feeling Frustrated With Your Doctors

    GRIPE #4: Hassling With Diabetes Supplies and Devices

    GRIPE #5: Diabetes Burnout— Never Getting a Break

    AND ANOTHER THING . . . (Gripes #6-#10)
    I have too much stuff I have to carry around with me.

    I have to check my BGs over and over again.

    I hate logging my diabetes numbers.

    New diabetes technologies take too long to get to us.

    I wish my doctor knew as much about diabetes as I do!



    Read full story and what to do about it
     
  2. this is interesting,

    i find a lot of my patients have similar complaints. I think it is also important for people with diabetes to take more control of their BGL's and be proactive themselves. I think if they wish there doctor new more about diabetes they should find a different GP considering they should be seeing an endocrinoligist if they are having ongoing problems.

    I also think patients need to be educated on the importance of exercise. I think this goes a long way! i find some patients are happy to complain about there doctors but are not prepared to adhere to a health diet or life-style.

    I also think while documenting their BGL's may be frustrating i think it helps them identify patterns and with some people may show an increase in neuropathic conditions with increased BGL's.

    Am i being a little harsh here?
     
  3. Admin2

    Admin2 Administrator Staff Member

  4. Fair point but in the end it is the patients body and they have to deal with the consequences! Therefore not monitoring their own condition and not completing tasks which may be time consuming could lead to further complications in the future. This could lead to even more time consuming activities such as waiting to be seen at a busy public podiatrist, dressing a wound or spending time in hospital.

    Further more not addressing body mass while they have the opportunity means if they do go on to develop a foot wound or charcot deformity, exercise is a lot more difficult. It then enters into the vicious cycle where weight loss is extremely hard.

    I know that i am only talking about a small percentage of patients with this next statement but a lot of the patients i see in the public system are on a disability pension or retired which means exercise for 30-40 mins a day should be achievable
     
  5. John Spina

    John Spina Active Member

    Justin I concur with you.Yes,it is true that most diabetics are careful,but you will be shocked at how many are not.I have patients with glucose readingd of 500 and higher.And they still aren't careful about what they put into their bodies and some drink,even heavily.
     
  6. hmccausl

    hmccausl Active Member

    But surely the issue concerns burn-out and feeling overwhelmed by a chronic condition? Even the most compliant and proactive person with diabetes will experience the frustrations or 'gripes' that Admin raised. Even more so those in denial or without the ability or inclination to adhere to best practice self management. May I suggest some PD in regards to chronic disease management, or at least a bit of empathy?!
     
  7. kitos

    kitos Active Member

    I think it is very difficult to empathise with diabetics unless you actually have it and can understand the enormity of it all. Let me explain what I mean.

    I was diagnosed with Type 11 a few years ago. I wasn't particularly overweight but had carried a small tyre around my middle since I can't remember when. I was very active and had a physically demanding job. I didn't eat large quantities of sweets or sweet items and never had done. I think I gave up sugar in drinks in my teens.

    Diabetes killed my father starting with an unseen necrotic foot and culminating in above knee amputation from which he never recovered about 3 yrs later. His levels were never higher than 12 mmol/l but rarely got below 7 even when on insulin.

    Type 11's are often stigmatised by health professionals as 'overweight and no exercise and bad diet.'

    From personal experience this is usually the opinion of overweight, smoking, near alcoholic, lipid ridden GP's/Drs who actually should drop dead before me :)

    On diagnosis they hit the poor soul with all the does and don'ts relating to diabetes and relate, often with some sadistic relish "of course you're more likley to have a stroke/heart attack, go blind, get neuropathy, nephropathy, be more at risk of getting ulcers, more at risk of getting gangrene and then lose one or more parts of your limbs and then the whole limb. Oh and by the way your life expectancy is likely to be shortened!" (and did I forget if you're a man your sex life may well become just a memory?)

    So having taken at least 5 seconds for breath they then launch into what medication they are about to put you on: statins, anti hypertensives, asprin, dieuretics, maybe metformin etc etc etc for the rest of your life.

    These of course will 'help' you live as 'normal' a life as possible. One will counteract the other, you'll get side effects and when you complain of these they'll change you onto something else or just shrug and say 'you need them'.

    They'll talk about hypo's and hyper's (as though the patient has taken any of this in after hearing they have a chronic disease from which there is no cure) with the gay abandon that only goes with someone who has never experienced one ( but knows a few that have).

    And then they say.............

    Of course if you are very careful and change all your eating/living/sleeping/sex/fun habits you can expect to live a reasonable life...........

    And you want a person NOT to drink after that lot??? :eek:

    Do you get my drift??

    Diabetics get fed up with being asked what their sugar levels are like and being made to feel guilty cos they are not within the limits expected. Many try their damndest to keep within limits and to live as healthy a life as they can. Some don't and won't but that's because they are individuals and they are entitled to live their lives how they wish to.

    The old phrase 'it takes one to know one' may be very apt in relation to diabetics and if you want to know what it's like to be one and to follow strict eating habits - take a note of absolutely everything you eat & drink and how little exercise you personally take for a week and then bitch like hell at yourself and imagine yourself with the best ulcer that you have treated all week.

    Then you may just be getting a little closer to understanding a diabetic.

    Nick
     
  8. Cameron

    Cameron Well-Known Member

    Nic

    Would concur entirely. I too am diabtetic and work with diabetics daily. As I tailor my health information I constantly think about how I would react if I were the patient. Not sure entirely whether I would feel all that empowered after a session. That encourages me to try to be more effective.

    One positive stroke is when in discussion and when appropriate I admit I rarely check my sugar levels. The response usually results in a better bonding between the patient and myself and very often the client starts to empathise with me (because we have something in common).

    Recent research here indicates whilst there is a significant increase in foot screening being undertaken (by nurses and allied health professionals), there seems to be little change in the quality of life of the diabetic population. The inference being collecting biodata does not equate to changing behaviour and it would be wrong to use foot screening as a PI.

    Something else which does cause me concern, as an educator, is the reliance put upon generic lesson plans derived to cover key issues in foot care. No argument with the content but these programs seem to have become prescriptive rather than descriptive and as a reductionist approach fail to meet individual client needs.

    I have recently collected sets of foot care advice pamphlets, which contain standard information but few are especially useful to client's needs.
    Not aware of any foot health promotion which has been independently evaluated and would be interested to know if such an animal exists?

    What say you?
    Cameron
     
  9. John Spina

    John Spina Active Member

    First of all,I am sorry that you are diabetic and you absolutely are in my thoughts and prayers.
    The way I see it,diabetes is a chronic disease that calls for some lifestyle changes.And,of course,compassion.My point is that there a lot of diabetics that are very careless with their bodies.I have a patient,a nice enough lady who has had multiple amputations and ulcerations.Yesterday,I drained an abscess on her and she had what looked like a loose flap of skin on the amputated leg.This is not the first time she has had stuff like this happen to her.Anyways,she is only 43!BTW:I am only 2 years younger.And she isn't very compliant in fact she is only reasonably compliant with me.It is sad but true that she does not have a long life to look forward to and what is even worse is that maybe this could have been avoided.
     
  10. kitos

    kitos Active Member

    Hi John,
    Thanks for your thoughts and your comments re the lady. Re my diabetes ~ Hey that's life and we all know that life often sucks. No-one is going to live for ever and I'd rather this than some other horrible painful or pitiful disease!

    Yes I absolutely agree with you that many diabetics are 'careless' with their bodies but maybe only in the sense that this comes to the fore as they are regularly seen and have health professionals 'Tutt Tutt' over them :) How many others do exactly the same thing or worse but because they damage is unseen and uncharted no one notices (unless they become obese or drop dead in front of you from a MI) ? (Think of how many overweight/fast food/caffeine addicts work in your nearest hospital??)

    Yes it is maybe sad that she doesn't have a long life to look forward to BUT maybe she recognises that and wants to have the best shortened life she can and enjoy foods etc that are 'banned' from diabetics normally. It may seem perverse to a lot of people but that's where the empathy and understanding should come in. We are so full of 'patient empowered treatments' but as soon as a poor old diabetic shows up with a HbA1c over 7.0 brows furrow and the prescription pad is reached for....... :D

    Yes I know that the bead crunchers will say that it costs millions to keep these non compliant patients in or out of hospital but it costs a hell of a lot of taxpayers money to remove tattoo's on the NHS (quoted as over £30 million in a year recently). Now is that any more perverse than a diabetic being less compliant than we would like. I am sure that fewer people die from tattoos than from diabetes.

    Best wishes
    Nick
     
    Last edited: Nov 12, 2006
  11. kitos

    kitos Active Member

    Hi Cameron,

    I like your approach to your patients.

    I am a mature, (OK old) 3rd yr student and I try to approach the people that I see in the same way as you. I always reflect on how I would feel if I was in the position of the patient. I really try not to lecture but give advice based on what I know; what I understand and what I would like to hear. Doesn't mean that I always follow my own advice (regular use of emollients etc etc etc) but that's because I am an individual. I do have a choice. I do want a life. More to the point I try to rule my diabetes and not the other way around which so many patients and I am afraid to say Health Professionals think it should be. It is an inconvienience in my life which I cope with.......not an all encompassing concrete necklace which makes me feel like a leper!

    I agree with you re screening and generic foot plans. I think the trouble with a lot of screening done by clinic nurses is that it is often rushed, half hearted and their knowledge of diabetes is often very dodgy and technique (like monofilament) is incorrect. (based on personal experience)

    If I wasn't a Podiatry student I would never have had a Doppler check done on my feet, never have had neurothesiometer check and would have had neuropathy tests with a monofilament that was so bent it was more suited to using as a TV aerial ! Not bad for 2 checks every 6 months for the past 4 yrs. Oh I forgot to add repeated blood pressure checks so that they can put me down in a range that 'Dr likes to see' ! :rolleyes:

    I have never seen a NHS Podiatrist as part of my diabetic 'care'. I was sent to a Foot Care Assistant who took an instant dislike to my shoes (wide Clarkes) and told me to buy some Ecco's and to rub cream in between my toes twice a day. :eek:

    So where is the parity, the professionalism, the continuity of care for diabetics within my own area? If it's like that in one area it will be mirrored in many others and then we wonder why patients aren't compliant? They can't take more care if they are told 'You're OK' because tests have been 'faulty'. I saw a patient not long ago who told me that their practice nurse had said their control (HbA1c) was 'pretty good' at 10 mmol/l. They told me they were concerned as it wasn't normally that high but the nurse had reassured them it was OK.

    Why am I reminded of 'those that live in glass houses etc.......'???

    I think the usual pamphlets given out by the NHS and Diabetes UK are pretty useless. Very few ever mention seeing a Podiatrist as a professional but always refer the patient back to their 'Health Team' for advice.

    I am not aware of any foot health promotion study at all but to be honest I haven't actually gone looking for one. Maybe I will :)

    Best wishes
    Nick
     
    Last edited: Nov 12, 2006
  12. Cameron

    Cameron Well-Known Member

    Thanks Nic and good to know we are share the same approach. I have an added complication in that I trained most of the pods I see as a client, and marvel at their expertise yet at the same time quivver at their apprent lack of understanding of the validity and reliability of their testing methods.

    God bless them.

    Cameron
     
  13. Felicity Prentice

    Felicity Prentice Active Member

    One thing that strikes me about diabetes as a condition is the 'numbers'. They dominate every part of your life - the daily BGL's, the monthly HbA1c's, the blood pressure, the Monofilament readings, the Doppler/ABI's, lipids, cholesterol, yada, yada, yada. What's more, every health professional and their dog knows 'just' enough about these numbers to tell you whether you are 'behaving'. (I use 'you' as a collective term, I do not have diabetes, although I have a chronic illness which permeates my life, so I hope I can rate on the empathy scale).

    So many other diseases/conditions are not dominated by such a plethora of numbers. There seems, in those cases, more chance that the individual can exert some subjective autonomy - instead of having their lives interpreted by 'the numbers'. When I work with people with diabetes I try to consider the whole of the health experience, and not get bogged down with the numbers. Numbers can give people outside of the lived experience of diabetes too much power.

    For too many health practitioners the numbers are used rather like a drunk person uses a lamp post - for support rather than illumination.

    cheers,

    Felicity
     
  14. kitos

    kitos Active Member

    Hi Feliity

    Oh well said !

    (And yes you can rate high on the empathy scale :D)

    Yes I think a lot of practitioners do use numbers and don't necessarily think outside those numbers. I have heard lots use it as a big stick but rarely heard one say 'Oh well done keep it up' if they hear a good set of results. :rolleyes:

    They are after all a guide and everyone is different and at different stages in their conditions some may have colds or any one of a million different reasons to be high or low and that's why their numbers are all different. But can some understand that??

    I totally agree with you re conditions with no numbers, can allow a degree of automony because no one has any scale to measure them against.

    I talked to a cancer patient the other day and asked if they had ever been on the end of 'doom and gloom' lectures from health professions. It was fairly rhetorical question really as I was pretty sure I knew the answer.

    So therefore why doesn't diabetes solicit a similar response from people??

    I have been told as I have Type 2... 'Oh never mind that's not too bad is it ~ it's the poor people on insulin that suffer'. :eek:


    I should worry ~ I understand how wrong that remark is but how about the poor MOP's that haven't a clue?

    Cheers
    Nick
     
  15. John Spina

    John Spina Active Member

    Felicity,I concur with you.We do treat too many patients as statistics.I have had people with glucose readings of 300-400 and they do OK.That is their baseline and they really cannot do better.
     
  16. Cameron

    Cameron Well-Known Member

    Many clients prefer to have higher blood sugar levels to prevent "hypos" and hang the long term consequences.

    Cameron
     
  17. John Spina

    John Spina Active Member

    In fact,a higher sugar level is even better than low for surgery.
     
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