1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

I have fallen out with my Diabeties Nurse, Help?

Discussion in 'Ask A Question' started by Xan2cv, Apr 2, 2015.

  1. Xan2cv

    Xan2cv Type 2 · Member

    Messages:
    18
    Likes Received:
    12
    Trophy Points:
    43
    I am a type 2 diabetic, who started with 25.0 sugars some 9 years ago, I was put on Metformin which made me vomit then metformin slow release which also made me vomit.

    They then switched me to Gliclazide for about 4 years until it became ineffective my biggest problem seems to be

    High sugars in the mornings.


    After Gliclazide I was put on Humalog short acting insulin and Lantus long acting insulin after requesting that the Diabetes clinic at Kettering Hospital see me because I was simply not getting good management from the Nurse at my GP clinic.


    I was put on Lantus and Humalog so that I could have greater control by varying the dosages my self I liked that and it made life a lot easier.


    Unfortunately I am an only child and in the last 3 years my 81 year old Father has contracted Cancer and My 80 year old Mother has Dementia, so I struggle to look after them both. My Father vomits regularly because his meds make him sick and the stress of it all has made my sugars difficult to manage I now have high blood pressure and take tablets for that discovered Christmas 2014.


    I have a history of recurrent DVT’s 27 in the last 26 years and I have also had 5 PE’s or pulmonary emboli in my lungs, I am not currently working but this helps me with time to help take care of my parents.


    About a month ago my Hb1ac’s were a little high again so the GP surgery Nurse tries to adjust my insulin after only one week she contacts me again and my morning highs haven’t come down at all and says that she gives up and will call the Diabetes Specialist. I assumed that it took at least 3 weeks for sugars to start to stabilise this Nurse expects very quick results on one hand and contradicts herself at her convince if things are not working out for her. .

    Three weeks pass by and my morning sugars drop to 14.0. This week I go in to see the nurse and the specialist, who just happens to turn out to be the specialist I saw at the diabetes clinic at Kettering hospital 6 years ago only this time she tells me I’m on the wrong insulin, now I really am confused.


    My GP at the same surgery has said that they wouldn’t necessarily worry about my sugars being high first thing in the mornings they would be more worried about them being constantly to low.


    I have read a lot online about people having high sugars in the mornings mine are usually controlled quite well and significantly lower by mid afternoon i.e. between 5.0 and 7.0. and fgrequently much lower by tea time ie between 5pm and 6pm.


    At the specialists appointment last Thursday I was put on Insuman Comb 25 to be taken once in the morning and once before my evening meal.


    The specialist gave me a card and said that if I ever ran out of insulin I could take the pass card to a chemist and get some insulin, the Nurse then piped up and said well you’ll still need a prescription for that , so what is the point of a pass card to get some insulin from the chemists in an emergency if the surgery is closed and you have no insulin, the pass card is a pointless piece of plastic.


    Ok so I have been taking Insuman Comb 25 for almost 4 days, my sugars in the mornings are reaching 25.0 my vision is getting blurry I had both cataracts surgically replaced last year and this worries me a lot.

    With such high sugars on Monday Tuesday and Wednesday of this week I took some short acting Humalog to get my sugars down to a reasonable level and hopefully back in control.


    On Thursday today the nurse phones me up to see how things are going on the new insulin which is clearly allowing my sugars to rise affecting my eyesight and the situation was getting worse whilst I was waiting for her to contact me, please remember I have had better control on the old insulin’s over a fairly long period of time.

    I am currently under a lot of stress with caring for my parents and I tried to explain this to the nurse but she poo poo’d it and said well you should try working and looking after your parents at the same time.


    Maybe she should keep her opinions to herself and consider that some may struggle with the stress of looking after their parents especially someone who has been assessed by Atos healthcare as being incapable of holding down a job.


    I don’t like this woman at all and never have. There have been other treatment issues with her in the past where I have had to speak to a doctor about her behaviour and question her attitude and methods in leg ulcer treatment.

    I was found to be correct in my assumption that other methods worked better for different patients.

    You see I freak out completely becoming very depressed when my legs are wrapped in compression bandages for months on end.


    On the phone today with the Nurse who telephoned me with her mobile phone I explained that my sugars were getting higher and higher and there was nothing I could do except take a small amount of fast acting Humalog to get my sugars down to a reasonable level being up every hour of the night to go to the toilet and then being awake enough to manage helping with my parents during the day is a real problem at the moment.


    I just got a barrage of abuse for deviating from the set dose of Insuman comb 25 which was allowing my sugars to escalate way above that of my previous readings on the old insulin’s.


    I said hang on a minute I am under a lot of stress and I really don’t need this at the moment, so she said she was going to put me on speaker phone so that others could hear the conversation and I hung up.


    I can’t even have private conversation about my own private healthcare and I really do not believe that this woman is qualified to be a diabetics nurse as every time I see her she wants to meddle by changing my insulin if she cant get a new dose of insulin right she looses here patience within a week and that is not acceptable at all.


    Now I have no diabetes treatment at all and I shall have to go to A & E when my insulin runs out I cannot get a GP appointment for 3 weeks and they wont give me an appointment because they are all booked up so I have to ring again in three weeks time. My new insulin won’t last that long I have maybe 2 weeks supply left if I’m lucky and the dose needs increasing anyway. However I have plenty of Lantus and humalogue left and may have to use that to regulate my sugars in the mean time.


    Any suggestions please? I will not go back to this Nurse again. For Diabetes treatment. In fact I don’t want to be treated by her again full stop.


    I have never been on any type of course apparently something that was available to people in all the time I have been treated but I never had a referral to go, I would love the opportunity to learn more about my Diabetes.

    some guidance as to what I can do next would be very helpful. suggestions that I should go back to the GP surgery Nurse would be a waste of time.

    many thanks .

    Nigel.
     
  2. lessci

    lessci Type 2 · Well-Known Member

    Messages:
    752
    Likes Received:
    658
    Trophy Points:
    133
    Change your GP would be my advise, get your BG's sorted sooner rather than later and then make a formal complaint to the practice manager. If you don't get anywhere with that you could escalate it through the PCT (or whatever they're called now).
     
    • Like Like x 2
  3. Daibell

    Daibell LADA · Master

    Messages:
    11,625
    Likes Received:
    7,031
    Trophy Points:
    298
    Hi. You have certainly had some very poor treatment. I wonder why you were changed form the Basal/Bolus regime (Lantus & Humalog) to a mixed insulin? Normally this would provide less control but I assume the specialist knows what he's doing? I don't understand this 'pass-card' business; most strange. It is up to the surgery to ensure you have a regular prescription which you call off every month and/or whenever needed. You should never need to run out of insulin. This is completely unacceptable behaviour by the surgery and you must complain to the Practice Manager and if it's possible move to another surgery.
     
  4. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,202
    Likes Received:
    12,462
    Trophy Points:
    298

    Nigel

    Is the diabetic nurse at the hospital or your GP?

    I should use your hospital but requested to go to one 25 miles away....glad I did now.

    However, that passcard us just to show your GP and any other people like chemists what you use. Incase of mix ups, running sgort or say for emergencies in a non speaking english country.

    Your GP should have been informed of the change in Insulin. You should either have had a note to take with you or they should have written to GP.

    Have you got a local chemist that you know that can give you a bottle of insulin until this is sorted?

    The normal way for any insulin is that you start on a lower dose and adjust up gradually every few days. Did they not give you onstructions to do this?
     
  5. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,202
    Likes Received:
    12,462
    Trophy Points:
    298
    Please ask your receptionist for a phone appointment, as this needs to be discussed with a GP immediately.
    As it is likely that your GP practice is undergoing joining up to one of these Federations being introduced they should be doing phone appointments.

    If not, your GP practice by now should have Internet access for prescriptions and booking appointments etc. you need to go into your Practice and ask to be an online patient.
    This allows you to also be a normal telephone or drop in patient too, it just allows you to sort things like this out online.

    Once registered online you can actually message the Practice and tell them yourself in a message that you have been given a change of insulin (say what it is) and you need it on repeat prescription immediately and if they have any problems please can you be contacted.
     
    • Like Like x 2
  6. Spiker

    Spiker Type 1 · Well-Known Member

    Messages:
    4,685
    Likes Received:
    8,439
    Trophy Points:
    178
    If you use your Humalog to get your blood sugar down into the normal range, will it stay steady on the dose of Insuman Combi 25? Or does it rise up again? If it rises up then the dosage of Insuman needs to be increased.
    I can see that you probably couldn't do a week long DESMOND course without a respite carer to look after your parents. See if you can be referred to a DESMOND course that takes place over several weeks. There is also the BDEC online course - do you think you could do that? It could teach you a lot about how to manage the insulin regime yourself. I'm not clear from your post what was going wrong with the Lantus plus Humalog and why they switched you off that.

    It is very sad you are having difficulty with the GP practice nurse. Do consider switching GP. Also see if there is a way that you can change the way you communicate with the nurse because to be honest it sounds like you are both winding each other up. I understand the pressure you are under, it must be very difficult.
     
  7. Spiker

    Spiker Type 1 · Well-Known Member

    Messages:
    4,685
    Likes Received:
    8,439
    Trophy Points:
    178
    What is your Hba1C by the way? Now that you have come on this forum you can get a lot of other advice on how to improve your Hba1C, and that can only help with your other difficulties such as DVT, PE and leg ulcers. Reducing your blood sugar will help with all of things, with the healing of them if nothing else, and probably prevention too.
     
    • Like Like x 2
  8. Miss Marple

    Miss Marple Family member · Newbie

    Messages:
    2
    Likes Received:
    6
    Trophy Points:
    43
    Nigel,
    I read your text, and my heart went out to you. You poor soul, you are clearly struggling with everything life is throwing at you. Having totally dependent parents with such poor health is a huge and massive strain on you and in every single aspect of your life. I'm not surprised you are completely fed up. I hope you can find some support soon. How can you look after yourself when so much of your energy is devoted to your Mum and Dad? There may be some support for you with your parents even if it is a friendly listening ear or advice through local support groups? You may have already asked for an assessment by Social Services? However, you can only manage their huge caring needs when you are physically strong and have looked after your own needs first.

    I am one of life's sceptics about medications and the current NHS. The NHS is not about the individual it is about mass medication and the cheapest care for the most people. That doesn't always work best for you or I. My husband has type 2 diabetes and has suffered the usual advice about 'just eat normally' and take medication (Glyclazide & Metformin etc) He too had high blood pressure. His sugar levels started to go out of control & we realised his diet was the culprit. He was eating too much bread, and starchy foods. We didn't get any support from the surgery for glucose strips and have to pay for those ourselves. We self tested and ate veg/fruit smoothies. This is what we tried and it has worked amazingly well. Please do try this - fresh fruit and veg has healed so much for us.

    We bought a Nutri Bullet and stuck to 3 smoothies a day with almond nuts & any other nuts in between. It has been the best thing we have ever bought. It has been a breakfast standard in 30 seconds, it has been so quick and easy to make. Plus you don't feel hungry. The smoothies were always half a cup of spinach with the rest oranges/apples/kiwi/pineapple/ strawberries or other fruits (skins included) which were pleasantly palatable. If you read the accompanying recipies you will see just how inventive they are. Our rule - something to eat every 2 hours. Nuts or nuts & raisins or chicken to or cheese. The results - have been absolutely amazing! Not only has my husband's Glucose levels plummetted from 16 or 17 to 4.5 and 5; gradually his early morning 9 has dropped to a 7.5 and 7. He occasionally forgot to take his Metformin overnight and still his levels were very low. I am almost angry at the blase nutritional advice from many NHS professionals. What is absolute is you have to love yourself enough to be ruthless and care for your body with the best nutrients you can find. I sense you do not have anyone to help you feel cared for too? Use everything that this forum recommends in nutrition to help aid diabetic control. (Ugly things like beetroot; cider vinegar (diluted with diet Dr Peppers to make it palatable) For about 2 months my husband's carb load was incredibly small for a time and then we used the glucose sticks before and 2 hours after every meal after a small portion of carbohydrate had been eaten. We could see which carbohydrate source he was sensitive to - be that bread; rice; potato. We could avoid those things. It was and still is a pain continually testing and testing. I am sure there will be many readers for whom this is daily routine (I am so sorry for you having to endure all of this) The way forward I am sure for good health is a diet free of any processed foods, a recipie book to make vegetable based soups, curries etc and a little bit of gentle walking every day.

    I can't make any comment about your medications but it does sound like you need an interested GP.
    Once you start on Insulin products it is heavy duty medication to be treated with respect. Regardless you can start to heal your body from within by avoiding processed foods, foods with hidden sugar and alcohols which are akin to poison and see how much that can help you? It will also help you to feel amazingly better just from better nutrition. If you start to feel more in control it may help lift your dark mood too?

    Good luck Nigel with gaining support and help, and finally - never give in!
     
    • Like Like x 6
  9. Xan2cv

    Xan2cv Type 2 · Member

    Messages:
    18
    Likes Received:
    12
    Trophy Points:
    43
    Hello all,

    Thank you for your replies,

    firstly the Nurse is at my GP's Health Centre.

    I have tonight received a call back from Diabeties.org.uk and spoke with a counsellor for about an Hour and she has given me a lot of options to consider. firstly I have to calm down as this has well and truly wound me up especially one day before the Easter bank hols, secondly apparently I have the right to ask my GP who is a good GP regardless of the staff she hires to work at the practice, to ask her to refer me to the Hospital Diabetes clinic for all my future Diabetes care, this will reportedly stop the Nurses interfering every time my GP requests an HB1ac test at my annual medical review at the Doctors health centre.,

    you would have thought the Nurses or if not a GP might have phoned me back to set a higher dosage for the new insulin rather than just leave it hanging over the Easter holidays I will definitely not go back to see them now and this is certainly grounds for a serious complaint.

    Apparently I need to be more assertive and tell the GP that I do not want the practice nurses treating my Diabetes as I cannot be confident that they will have the patience to do the job properly. And therefore I feel that my condition would be better managed at the Hospital Specialist Clinic.

    It was this clinic that put me on Humalog and Lantus to give me more control about 4 years ago.

    I have a graph available at http://www.mydiabetesmyway.scot.nhs.uk/ which shows each different type of insulin and how it works.
    The new insulin they have put me on to reduce morning highs does the same thing as Humulin M3 which is what they had me on many years ago
    it did not lower my morning highs at all so I managed to get to see the Hospital Clinic staff and they put me on Lantus and Humalog which I found easier to manage.
    my problem is caring for my parents in the middle of the night my sugars drop so I have to eat and this gives me high sugars in the mornings but the Nurses at the GP clinic are not willing to listen to what I am going through I sleep when I can and I'm up all night most nights getting my Dad back to his bed because he falls over getting up to go to the toilet and I can't lift him because I have an inguinal hernia that cannot be operated on because I am on anticoagulants that no surgeon wants to take me off of to operate on me. I just have to put a chair in front of my Father and coax him to get up on his own when he is ready.
    No surgeon wants to give me a general anaesthetic either because that can cause blood clots.

    My Father won't allow social services into the house to do an assessment he is old-school and truly believes they will take his house away to pay for his care. I have to respect his wishes and try my best to cope with it all.

    Miss Marple being on anticoagulants and eating spinach is a no no for me as it would stop my blood platelets sticking together so much that if I cut myself my blood would never clot. however I do eat plenty of fresh fruit and veg every day and fully understand the importance of eating properly. for the time being I have increased the dose of Insuman comb 25 to 24 units twice a day from 20 units twice a day I have 3 viles left of this then its back to my old regime of Lantus and Humalog again until I can get to see a GP or specialist at the Hospital., I will persevere with the insuman comb 25 for as long as it lasts but after that I don't want to see it again as it makes me feel sick Taking it. I shall monitor my sugars three times a day to give them the benefit of the doubt as to weather or not it helped change my high sugars in the mornings. I haven't once had a hypo on the insuman comb 25 I used to get close to hypos on Lantus and Humalog but I always felt them coming with pins and needles in my forehead and cheeks I'd get the shakes sometimes as well but only after having elevated sugars for several days then dropping low again. I have never had to have assistance from someone else whilst taking Lantus and Humalog and I think that is what worries me most of all living alone if they change my insulin and I have hypo at night or when I'm asleep will I wake up?
     
    #9 Xan2cv, Apr 2, 2015 at 9:48 PM
    Last edited by a moderator: Apr 2, 2015
  10. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,202
    Likes Received:
    12,462
    Trophy Points:
    298
    Hi

    If it is your GP practice (despite a nice GP) that is causing you grief then you need to go back to hospital care and yes ask for a referral.

    In Northants there is a good service northantscarers.org that you should be able to access without social services getting involved. They organise a huge amount for persons in your situation. Are you registered with them?

    Your lows during the night is not due to having to care for your parents but more likely to be your insulin dose being incorrect. Then your higher levels may well be due to DP and/or over treating a low level.

    I have private messaged you as I live in your area...
     
    • Like Like x 2
  11. Spiker

    Spiker Type 1 · Well-Known Member

    Messages:
    4,685
    Likes Received:
    8,439
    Trophy Points:
    178
    I completely agree with DD.
     
  12. Xan2cv

    Xan2cv Type 2 · Member

    Messages:
    18
    Likes Received:
    12
    Trophy Points:
    43
    Hey everyone Thank you for your kind words,

    Over the week before Easter 2015 I took the new insulin Insuman comb 25
    and it caused itching at the injection site at times I wanted to scratch until my skin bled.
    I even tried to inject in my belly after being told to inject in my legs.

    on day one approximately 1 hour after the first injection I started to get stomach cramps
    which got worse and worse at each passing day they were more painful after injecting insuman comb 25
    both in the morning and in the evening my sugars were not going below 15.0
    .
    because I had fallen out with my Nurse and Hung up on her she had not set a higher dose to control my sugars so I increased the dose from 20 units to 24 slowly and my night time Highs went down from 24.0 to around 7.0 but my morning highs were still in the 20's
    The stomach ache still got much worse by the early hours of Thursday Morning I was spending my nights on the toilet.

    By Easter Sunday Morning I decided I had - Had enough and I am now back on my previous insulin
    Lantus long acting and Humalog short acting, I have made some drastic dietary changes
    and my sugar levels are coming down the belly ache is only mild now but the diahorea has stopped.
    and I am getting control again of my sugars, the dietary changes have reduced the amount of Lantus
    I need and I am far more confident about managing my sugar levels this way.

    I have written letters to say I am no longer interested in the nurse treating me for diabetes one to the nurse
    and one to my GP.I have also advised my GP that I am back on my old insulin's that I have been on for more than five years.
    I got a bit lazy at testing my sugars before which is probably what started all this changing insulin off.

    I have asked my GP to refer me to the local hospital diabetes clinic, In the three past visits I have made to this centre I have never had any personality clash or problem with their staff. in fact its is almost like you are having a conversation with a Diabetic not just
    some nurse who doesn't have any personal experience (no offence intended).

    my nurse only attempted one change of dose of my Lantus before declaring one week later that she gives up and is calling in a specialist.
    The specialist turns up about three weeks later.

    when I went to the hospital clinic several years ago, I was on Humulin M3, they gave me two options control or less control I chose control, which determined the insulin's I would use, it seems from the reading I have been doing that Humulin M3 is very similar to insuman comb 25 so I don't understand why I am now being led backwards to insulin's that simply didn't work in the past and as well as my Lantus and Humalog and don't offer as much personal control. it would seem that the choice of how I would like to control my T2 diabetes has gone out of the equation for good.

    I shall have to wait now and see if things move forward, thank you again everyone for your kind support.

    it was very much appreciated at a time when things were going really bad for me.

    partly my own fault as they say it takes two to tango. cheers.

    Xan2cv
     
    • Like Like x 2
    #12 Xan2cv, Apr 7, 2015 at 12:06 PM
    Last edited by a moderator: Apr 7, 2015
  13. Miss Marple

    Miss Marple Family member · Newbie

    Messages:
    2
    Likes Received:
    6
    Trophy Points:
    43
    Nigel,
    Good luck with everything you are going through. I apologise for my over excited naive comments, that were more about me, and not you. I'm off my soap box now!!! I hope you do find the better support for you from now on and also feel better about your whole circumstances. It is good to know there are some great people on this site, with really experienced info. Good luck with your Mum and Dad, I know it's not easy. Happy Easter. Jane
     
  14. AndBreathe

    AndBreathe I reversed my Type 2 · Expert
    Retired Moderator

    Messages:
    9,659
    Likes Received:
    15,719
    Trophy Points:
    178
    Good luck with everything. You certainly have a lot on your plate at the moment; one way or another.

    In terms of support with other issues; do you have contact with a MacMillan Nurse, to support you with your father's care? I am a great supporter of MacMillan, who helped me a lot when my mother was ill. They can arrange all sorts, from respite care for a few hours, or longer, to just talking through your concerns and worries, to ensuring your home is adapted in any way that would make life easier for you, or the sufferer. Like your father, my mother was of an age whereby you kept your issues at home, but she couldn't say enough good things about MacMillan, once she had properly encountered them. I have no experience of any similar services for dementia sufferers and carers, but I'm sure they will exist.

    I know this is a diabetes forum, but your bigger picture is surely affecting all sorts of things, including your mood.

    Make sure you look after yourself.
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook