Sunday, 24 January 2016

Diabetes Care - What Works




**Disclaimer** This blog is about methods that work for me and my diabetes, in my clinic setting, with the team that provides my care. We all have very different care, funding, time, management techniques, preferences etc, so this blog is from my personal experience and musings.


I’m conscious that when I’m asked to present at conferences, training sessions, lectures or write for journals and other publications, many of the requests I receive are about what went wrong with my diabetes and my care. When I deliver a presentation I always ensure that whoever is listening understands that what happened was in my past and is not my present or future. A great deal has changed in my T1D care over the last 4 years and I have a lot to be thankful for... (cont) 



Spending much of my time engaging with patients and carers and discussing their experiences has been a real eye opener as to just how well my care is delivered, and looking back I can see just how much has changed to make that happen. I don’t know the ins and outs of how those changes came about but, as a patient, I can see and feel that whatever was done has worked well indeed.


This blog is about what works.


Email

Email is not a new concept, dare I say it’s even a bit old fashioned in some ways, but it is a very effective method of communication in health care when I need a non-urgent question answering and I don’t have the time to keep phoning my diabetes clinic in an attempt to reach my consultant. I know that he may not be near a phone when I’m free to make or take a call; instead he can reply to an email as and when he picks it up, send a few lines to reply (or even a simple “yes” or “no”) and that’s it, my question is answered and my mind is put at ease. I think it’s very important to understand that there are boundaries and expectations from both sides however. I wouldn’t email any of my team at 3am on a Saturday morning and expect to have a reply within an hour; a Monday morning or afternoon reply is a much more realistic expectation. Similarly, I know that if I’m in a situation when I’m very unwell and need advice straight away then email isn’t the best method of communication. However, in the right situation it has proven to be very effective for me, providing flexibility and a different method of access to my HCPs, sharable information (e.g. blood glucose data) and HbA1c results and importantly it helps to build a trusting relationship between my HCPs and I. Personally I find some topics much easier to approach over email than on the phone or face-to-face and this allows for further conversations to develop in person if I so wish.

Text

Much like email, I have been provided with my consultant and my diabetes specialist nurse’s mobile phone numbers for certain situations. This came about when I started using my insulin pump and I was provided with these numbers in case I found myself in a situation that was not an emergency but could not wait until the next day or after the weekend to be resolved. I realise that providing patients with mobile phone numbers requires a lot of trust and as patients we are advised of situations which would warrant a phone call or a text. As with email, I know there are boundaries and I would not abuse the privilege of being given my HCPs phone number. This is a method of communication that I haven’t had to use, however I was very grateful to have an extra safety net in the first few weeks of using my insulin pump as it can be an uncertain time for new users.

ADHOC

ADHOC appointments are brilliant for me with my hectic schedule and never knowing whether I’m coming, going or just been! Often at the end of my appointment my consultant will arrange our next one there and then rather than waiting for me to be sent a letter with a time/date which isn’t convenient. He will tell me when he’s available and he books me in there and then, followed up by an email to confirm the time and date. Although I do have my regular 6-12 monthly appointment booked via normal means, if I have an issue that I need to discuss which can’t wait for that amount of time, or he feels that it is necessary for me to be seen more frequently, then he will arrange this between the two of us. I very much appreciate how flexible he is to meet my needs and I find that even a quick 5-10 minute appointment is far more effective than waiting for my annual review or being put onto a long waiting list to see one of his team.

Respect

This is so very important to me – respect is a two way street in my appointments. I have a great deal of respect for my team and I know that is reciprocated. We value each other’s opinions, skills and strengths and we are all honest about our weaknesses. We are all human after all and I can’t expect them to have the answer every time, but what makes the difference is when someone says “I don’t know but I will find out for you”. I imagine that is very difficult to do as a HCP (I know I’ve been in that situation myself before) and when it comes to something as important as my diabetes, I respect the fact that they don’t take a wild guess or leave me with no answer at all. I look up to my team because I know that they have worked very hard to implement the changes that myself and other patients have needed. I hear so often from other patients outside of our local area that they don’t feel valued or listened to and it makes me realise how different my team is to many out there. That’s not to say that there aren’t other forward thinking and proactive teams; I know there are some great HCPs leading diabetes care with us.

No duplications

I'm unsure of when or why it happened but a few years ago I stopped receiving letters from my GP to have my HbA1c done at the surgery. I have my blood taken at the hospital after my appointments and I used to find it very frustrating that I would then be requested to have it repeated by my GP. I honestly don’t mind where I get it done, as long as it is only done once and as long as the result is shared between my GP and consultant (which it now is). Perhaps this is where the issue comes in… how easy is sharing of information between the two? I’m more than happy for my results to be share and discussed if it means that I’m not having my veins poked and prodded more than it is necessary. This goes for any test that I need. One thing I will say is that having all of my tests done consistently in one area would be a benefit to me. I find that although I have my blood taken at the hospital I am then required to have my other health care essentials completed at the GP surgery, sometimes going home with urine bottles to bring back at a later date (which I admit to forgetting about), then going off to have my eyes tested at a later date. With all of my other appointments and commitments I would prefer to get everything done and out of the way in one go.  

Up to date info

This isn’t as much of a big deal to me at the moment as I am quite proactive in knowing who does what and when they do it when it comes to my care, but it is important for those times when I need to quickly find a phone number, or check the day of a certain clinic. I know which nurse assists in running which clinic and I know which consultant has a special interest in __________ (fill in the blank) aspect of diabetes, however if I wasn’t so nosey I could find clear and up to date information available on my hospital’s website. This, I imagine, is very useful for people who have been newly diagnosed or have just moved to the area.

Willingness to try new ideas

In a way this ties in with respect but I find my team are more than happy for me to try different technology or methods to manage my diabetes. An example is when the Freestyle Libre came onto the market – I was amongst a group of 6 patients in the UK to be the first to use it and my consultant was more than happy to assist me with this in order to get the best outcomes from the technology. This included me emailing him data (at his request, I must add) for him to review before I met him. A year or so later I was asked to trial the new MiniMed 640G insulin pump which required him to assist me should I need help. He was more than happy to learn about this new insulin pump, as was my DSN, in order to see how it could benefit me. When it comes to my diet I do tend to intermittently try low carb and I’m aware that not many HCPs advocate this to their patients. He talked me through the pros and cons and accepted that it was something I would like to try after helping me to make an informed decision; he then supported me with following that decision through. It leaves me feeling like I can have open and honest conversations with him about my diabetes whilst helping me to feel more in control of the decisions I make. This is valuable as it builds my confidence but also maintains a good relationship between the two of us.

Partnership and team work

Last but by no means least, my consultant, DSN, dietician and I are able to work together as a team to improve our outcomes. I say “our outcomes” as I am very aware that my results equal their results. We each have targets that we want to reach or maintain and I feel that this is very much a team effort. In all honesty I wouldn’t want to take on diabetes with anyone other than my consultant but there have been times when barriers have gotten in the way. The biggest barrier being myself. There have been periods of struggles when I’ve become frustrated with my diabetes, with my management and results, and there have been times when I have let this become an obstacle between us. However, those times are thankfully rare and I overcome them because I have such a supportive team alongside me. Not behind me or in front, but alongside me. Everything that I have mentioned in this blog is in place for the benefit of patients and whilst it may also make the jobs of our HCPs easier, ultimately they have made changes for their patients. 


Ninjabetic x 
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