Are you receiving the right care?

Happy Monday!

I stumbled across a very interesting thread on the forum last week. I was drawn into the thread immediately when I read the title “Worst review with DSN.” DSN being a Diabetes Specialist Nurse.

Without revealing names directly, a particular Type 2 Diabetic had expressed his concern and frustration towards a recent appointment with his DSN. He exclaimed how he felt like he wasn’t listened to in his appointment and that the DSN wasn’t particularly helpful. His frustrations were stemming from the fact he is experiencing blood sugar levels which are running far too high. He is a Type 2 Diabetic and controls his Diabetes through injections, much like that of a Type 1. He had initially been introduced to controlling his Diabetes through the DESMOND course, which stands for ‘Diabetes Education and Self Management for Ongoing and Newly Diagnosed.’

As his blood sugar levels have been running so high, he had asked the DSN if he would be able to possibly attend (or learn more about) the DAFNE course which stands for ‘Dose Adjustment for Normal Eating.’ (Which is the course I follow). The DSN was quick to dismiss his thoughts and told him that as the DAFNE course is for Type 1 Diabetics, and that the DESMOND course is much more suitable, despite the fact his blood sugar levels are running so high.

Now, as a Type 1, I am no expert in Type 2 Diabetes and the DESMOND course, but would it really be that harmful for this man to attend the DAFNE course and learn more about it? At the end of the day, DAFNE is all about carb counting and surely it’s important for all Diabetics to learn about that? Especially if you’re Type 2 and overweight, surely learning about carb counting can only be helpful, rather than a hindrance.

There were an abundance of replies on the thread with others expressing their concern and offering various suggestions. One particular user made an interesting point of saying that if the DSN isn’t Diabetic themselves, then their knowledge is limited. To some degree I agree with this comment. I do think that DSNs have a vast knowledge about the condition, but it really does make a difference when you are Diabetic, as you know your own body and what things make your blood sugar high, how your body reacts after drinking alcohol or even how your body and blood sugar levels react after exercise. Everyone is different. What might work for one person, might be a dreadful choice for somebody else. DSNs definitely have a tonne of knowledge and understanding, however their knowledge doesn’t stem to knowing everything about every Diabetic as an individual. It is very hard and I really do commend them for the work they do, but yes, I do feel that it is different when you experience Diabetes yourself.

A few individuals on the thread also brought to light that in the past they have been unhappy with the care they have or haven’t received from their GP/hospital and have actually requested to move. Unfortunately, I can relate to this.

When something in your life changes so drastically and you have to make adjustments and learn new information everyday, the one thing you want to rely on is knowing that you have a strong care team and the right amount of support. Whether that be family, friends or industry professionals, having that hub is very important.

Truth be told, I would much rather be able to stick with an amazing GP/hospital than have to change it all the time, but I have moved around a lot so changing my GP/hospital has always been a priority and I have had very different experiences at each new location.

When I was first diagnosed back up North I had a great team who were extremely supportive. They started me off with the knowledge that I needed and were setting up all of the regular appointments at the hospital to check up with me. They sent through appointments for Retinopathy (Diabetic Retinopathy is when damage occurs to the retina due to Diabetes which can eventually lead to blindness), routine appointments for regular catch ups and appointments to have my blood taken to receive my HBA1c results. (HBA1c is also known as the haemoglobin A1c which is a blood test to give a good indication of how well your Diabetes is being controlled). All of these appointments come hand in hand with Diabetes (among other bits and bobs) and should all be sent out accordingly from your GP/hospital.

When I was at University in Carlisle, I was also looked after very well. It came to a point when my current Diabetes management wasn’t quite working for me anymore, so the hospital referred me to partake in the DAFNE course. I went on a week long course to learn all about it. It was brilliant and I am so glad that I was referred and I am still following DAFNE today.

So far, my care has been pretty good and I’ve had pretty easy going experiences in between.  However, that all changed for a short while last year.

I’d moved again and joined a new practice, which was also a walk in centre, because of this the practice was constantly heaving with people. They had obviously taken on far too many patients and were struggling to manage it with the amount of walk ins they would have on a daily basis. Sometimes I would head into the practice and patients would be shouting at the reception staff and leaning over their desks and getting into their personal space. It was awful.

First of all, I felt like it was nigh on impossible to get an appointment with the DSN as she was only in a couple of days a week and always seemed fully booked. I’d previously managed to secure an appointment with the GP who told me I would need to arrange my own appointment with the DSN. He wanted me to change my blood testing meter to a different one which he claimed “all of the diabetic patients at the practice were using.” Because of this, he took some of my prescription items off of my repeat prescription as he said they would be changing anyway when I saw the DSN and moved onto a new blood tester. WEEKS went by before I managed to gain an appointment with the DSN. I told her about the GP wanting me to change blood tester. She went off in search of the particular meter and found that there weren’t actually any left at the practice. Great. She told me that she would give me a phone call as soon as one came in. However, she never did.

So now, I was at a point of not having a new meter and also not having the correct items on my prescription anymore because the GP had taken them off! I was beginning to panic as I was running low on my equipment and needed to tide myself over before I was supposedly able to receive this new meter. I had to make ANOTHER appointment with the GP to simply order my items again. He put the order through for me but didn’t actually add them to my repeat prescription. As you can imagine I was at a point now where I was feeling extremely overlooked, anxious and stressed. Not only had they mucked up my prescription, but I’d asked the reception staff if they would be sending out letters for Retinopathy and HBA1c appointments and she actually told me no! That I would have to arrange that myself! Sorry, what?!

I’d began to run low on equipment and medication again and tried to put in a prescription for what I’d needed with their onsite pharmacy. I’d taken my boyfriend, Bobby along with me as the situation made me feel so unnerved. The pharmacy declined my prescription and told me that they could not give me what I needed. I started to get very upset. I had never experienced such a difficult time before. Why was this situation happening? Dealing with Diabetes is enough, I don’t need to have a fight with the healthcare professionals who should be making this easier for me, surely? I got so upset on that day that I couldn’t actually speak to any of the staff due to how distressed I was and Bobby had to take over. One of the GPs appeared and due to my hysterical crying wrote up a prescription for me to get what I needed. Why did it have to come to that? That shouldn’t have been the way the situation was dealt with.

It’s safe to say that I pretty swiftly left that practice after that incident and never went back. It was awful, absolutely awful. However, I am extremely lucky now to be with a different practice, who I can honestly say are amazing. They are very understanding and everything is perfectly in place, which is how it should be. I am extremely grateful for that. Ironically, I told them about the incident with the previous practice and the changing blood meter scenario. The DSN actually told me that it was really unnecessary.

I would never, ever wish for anyone to experience the lack of care that I previously experienced. Always make sure you have the best team on hand to help you and guide you through your Diabetic journey. It is so very important. You are number one and your health is what matters.


Published by diabetesandtheactor

Actress, singer and type 1 diabetic.

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