If you could change 1 thing about your health care...

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Stefan Diabetes UK

Stefan Diabetes UK

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Relationship to Diabetes
If you could change one thing about your health care, what would it be?

This is the second weekly question in our Future of Diabetes online conversation. We got loads of really interesting responses to last week's question so looking forward to hearing what you think on this one 🙂

If you haven't heard about the Future of Diabetes project yet, there's a bit more information about it here on our website. But in short we want to hear your thoughts on living with diabetes for a new report called the 'Future of Diabetes' which will be published this autumn, and used to help us work towards a world where diabetes can do no harm.

Any and all comments welcome!
 
Well, I would like pump therapy but, at the moment at least, my team have said no and just quote me the NICE guidelines, which frankly don't mean much to me. I've looked at INPUT website and nearest pump friendly hospital to me is too far away. I will keep on at them in the hope they will relent.
I know pump therapy is very costly, but if it helps people to have better control, thus reducing the complications that come with high bgs and their subsequent (costly) treatments, then surely it is worth it.
I guess what I'm trying to say is there should be the ability for the individual to choose, rather than be told.
 
More information on diagnosis, all I was given was a prescription and a piece of paper that basically said nothing. I think a pack that is put together with the help of diabetics would be good idea and a link to this site given.
 
I'd like more courses of more types eg for active people with type 1 diabetes, courses such as Animas Sports at Loughborough, plus Leeds Beckett University (from Sept 2017) are excellent, but demand exceeds supply, even at relatively high cost - I'd have been happy to camp, instead of staying in a very comfortable conference hotel at Loughborough.
For me, promoting an interesting life, after diagnosis with T1D in young adulthood is vital. I've never been able to attend a DAFNE course, but I'm not sure I'd find it much use, having survived, thrived even, 21 years with T1D.
 
I wish some nurses who know nowt about me. would stop saying I'm a bad diabetic just because I'm on insulin.
 
I'd like to be continued to been seen or at least have a telephone call with DSN on regular basis (even just every 6 months). I was signed off by them after 6 weeks, and am about to be signed off by consultant after only 2 appts in 13 months i.e.since DX. None of the 7 GP at my practice has knowledge of diabetes and the supposed diabetes nurse there knows less than I do.
Consequently, if I have a question, I come to this forum as I know I'll get good, quick advice and not have to wait a) for GP appt to be referred back to DSN or consultant and b) then wait heaven knows how long to see them.
It could just be a fairly quick query about ratios, basal etc but not being able to just quickly have a call with them isn't great and they then do not know what I am doing.
So, my request for change in care - sorry about the little rant 🙂 - is that you can still speak to an expert in your medical team for quick queries, and you have a call or appt every 6 months or so if you want one, so that everyone knows and is comfortable about what they are doing.
Basically, not to just be forgotten, unless you want to be!
 
Good grief GG - I'd absolutely hate it if my 'safety net' was whipped out from under me! I was given the choice about a year ago and I said I was happy to only be seen every 12 months and anything more urgent have the facility I already have anyway, to email or ring the DSN. However - they haven't changed it to that yet and I see both the organ grinder and the DSN (she ain't a monkey by any means LOL) every 6 months.

What would I change? I'd like them all to have each others tests and consultation notes at hand and for them all to sing from the same hymnsheet. I have absolutely no idea who tells who, what. Years ago, we all used to get a copy letter from any consultant, telling our GP what was discussed and what was decided. Now we hear absolutely zilch. Do they actually communicate anything to our GP even?

My GP always asks 'What did the hospital say?' about anything and everything - why doesn't he know?
 
To be seen by diabetes specialist straight away rather than a gp.
 
I would have liked the doc to concentrate on the D diagnosis instead of lumping it in with whatever else I was there for that day. I didn't take it in. I would have liked to be given a meter and as many strips/lancets as I need. If I'd have taken a meter home that day it might have sunk in. It still feels unreal to me. Nobody since has said anything about it. I'm invisible apart from blood tests every so often and I don't see anybody even then, no results given or anything. I just get letters, go for bloods for this or that, and I go and then zilch...I hear nothing. The only thing I had that was 'D' was the tests at Specsavers and having to give my number in. I think that's what finally brought it home to me that I was D with my eyes being blurry too. I telephoned not long ago and asked for strips and was told I didn't need to measure.
 
For type 2's on insulin to be able to get a pump on nhs. I've self funded dexcom cgm's for over 6yrs but can't afford to self fund a pump as well for integrated pump and cgm. I would like type 1's to have increased access to pumps as well.
 
Maintain access to Specialist care for T1s. As I am on a pump I am still seen by consultant and DSN and also have access to DSN by phone and email as necessary for any urgent help. Others on MDI have been transferred back to GP and have no access to anyone with knowledge about changing ratios etc.
 
I would like CGMs and pumps to be available to anyone on insulin who needs them - anyone who's insulin-sensitive, or who has poor hypo-awareness, or who is struggling with swinging bgls, or who is lacking a pancreas! I'd like it to be automatic, not something we have to fight for, and I'd like it to be permanent, or at least long-term, not short-term loan.
 
Outreach clinics for pump users. Where I live, I am a ferry ride and 2 hour drive from the pump clinic in Paisley. That's the supply, all the education and support from the consultant. I can't give up the time. It can't be done by hospital transport, and I can't afford repeated £250 taxi rides. If the consultant and his team, once a month, could come up to the highlands, either to Oban or Fortwilliam hospitals it would save thousands on hospital transport for the likes of me, and a pump would become a practical proposition. I don't doubt this applies in regions of Wales, and in the far south east of England.
 
Improved and consistent access to both DSNs and consultants where needed. It took me 5 months to get my basal insulin switched and had to suffer through it as I had no other option! At the moment to talk to a DSN I have to call the advice line (before 12:30 or they don't call you back), leave a voicemail, and wait for them to call back. Around 80% of the time you never hear back from them! It is clearly a system designed to repel patients.
 
I would like to see people from here employed as D Nurses because they know the situation from the inside, along with the shocking fact that the "one size fits all" template is a hindrance not a help.
 
mikeyB said:
Outreach clinics for pump users. Where I live, I am a ferry ride and 2 hour drive from the pump clinic in Paisley. That's the supply, all the education and support from the consultant. I can't give up the time. It can't be done by hospital transport, and I can't afford repeated £250 taxi rides. If the consultant and his team, once a month, could come up to the highlands, either to Oban or Fortwilliam hospitals it would save thousands on hospital transport for the likes of me, and a pump would become a practical proposition. I don't doubt this applies in regions of Wales, and in the far south east of England.
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Outreach clinics would also be great for people who can't access hospitals for other reasons, as well as distance. People who are seriously ill with conditions other than diabetes are often invisible so far as anything like this is concerned, just because getting to a hospital is too big an effort for us. I have my eye photos done in a mobile unit in my local surgery car park, which is fantastic - so why not do the same with a pump clinic, a CGM fitting, an annual check-up with a DSN? I realise they wouldn't be able to do this at every surgery in every town and village, but travelling to a mobile unit in the next town would be a heck of a lot easier for me than hanging around for a couple of hours in a hospital struggling to breathe, and then taking 6 weeks to recover.
 
To be treated as a potential Late onset T1 by my GP rather than being assumed to be a T2 due to my age of 60. My diagnosis was simply guessed by him and wrong. I expected more from a diabetes expert GP.
 
I would like to be given more advice and support with my diagnosis and what happens next, Rather then here is your perscription do this and we will see how we go.
 
My care has on the whole been fine. My issue is with non-specialist HCP's who don't seem to understand as younger T1's we eventually get older. As I'm now, ahem, in middle age 😱 I've had a couple of instances in recent years of both a GP and nurse at the practice not even looking at my records and just assuming I must be T2 because of my age. I swapped meters a couple of years ago but noticed the test strips was changed to 50 so I asked the GP about it and she said they 'weren't allowed' to give more than 50 out per prescription. It was sorted in the end via the DN at the surgery and there is now a large 'Type 1 diabetic' at the top of my medical records. I'm not asking them for an in-depth knowledge of it because that's not their job but I just would like non-specialists to be aware that not everyone over 40 with diabetes has T2, either because they were diagnosed with T1 at an older age or like me from simply just getting older.
 
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