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What could the NHS do to improve type 1 care ?

Juicyj

Juicyj

Expert
Retired Moderator
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9,269
Location
Worcestershire
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
I was thinking about this question this morning when writing an email to my DSN..

On the whole I think the NHS do ok at supporting type 1, but fundamentally I think they could do alot better (if cost wasn't an issue of course).

My thoughts are:

- Operate a buddy system for all type 1 diabetics, so patients could opt in and choose a buddy to pair with, so someone of a similar age, treatment plan etc to communicate with and help each other (consent required from both parties of course). This would be great for kids as they wouldn't feel alone or different, but good for adults too as support is so vital in managing well.

- More diabetic nurses, mine is fabulous but appears to be over worked and sadly it's difficult sometimes to make contact as either busy or away.

What's your thoughts ?
 
Agree on the clinic staff being overstretched @Juicyj, sadly this isn't likely to improve in the near future.

Isn't there already a buddy system in place, sure I've read something on Diabetes UK about the buddy system taking place in some regions.
 
noblehead said:
Agree on the clinic staff being overstretched @Juicyj, sadly this isn't likely to improve in the near future.

Isn't there already a buddy system in place, sure I've read something on Diabetes UK about the buddy system taking place in some regions.
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Hey Noble - I haven't come across a buddy system in my trust, so is this just limited to certain trusts ? It would be so much easier if each trust was the same as then the uniform approach would mean a more open, transparent platform and less people getting disappointed as expectations would be the same for each area.
 
Juicyj said:
Hey Noble - I haven't come across a buddy system in my trust, so is this just limited to certain trusts ?
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Not sure tbh but a Google search may say, but I'm sure donnellsdogs has mentioned the buddy system before on the forum.
 
tim2000s said:
Have you read this topic @Juicyj ? http://www.diabetes.co.uk/forum/thr...-for-the-nhs-with-your-type-1-diabetes.87456/

It asked much the same thing. Peer to peer support is talked about a lot in the NHS Diabetes world. Some hospitals have peer support groups, others don't. Hampshire has a charitable group called "Sugar Buddies" set up.

It has been quite a hot topic for some time.
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Sorry Tim I hadn't seen this thread, I once asked my DSN about a buddy system but was told in our Trust they don't like to share other type 1's information so dismissed it then, but as time goes on it feels it would have so much benefit to help those feeling isolated or dismissive of their condition, even if it's a friendly chat every few months would be so valuable.
 
mahola said:
Thankfully, my DSN is fabulous and makes me feel comfortable asking anything.

But when I was discharged from hospital after suffering from DKA, the nurse on the ward discharged me and said if I need any other information to "have a Google"

Google scares me.
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Google scares me too - can look up one thing and come away thinking you have something completely different, very haphazard way of searching for information.
 
Great thread Juicyj, thank you.

I would like the NHS medical staff, to actually know of Type 1.

Diabetes Specialists, Nurses, DSN's to treat us as individual's with different needs, as it's the 'one size doesn't fit all' syndrome and to listen to us as mature patients.

Offer a group meeting, within the hospital for Type 1's to get together, the problem being the time of day, many work in daylight hours and I don't drive, so getting there at night could be a problem.
Type 1 can be a very frustrating, worrying at times and rather complex too. Having a face to face chat with like minded people over a tea or coffee sounds good.
 
I believe my trust has a buddy system of some kind as when I started on my pump, I had a buddy briefly..

For me, the one thing they could do to improve care is to go back to teaching carb counting on diagnosis and giving out a basic booklet. It always shocks me how many people seem to be sent off and told to take a certain dose of insulin before meals and 'eat normally'
 
I have a brilliant team looking after me,but,they are under so much pressure to try to keep up and I can't see it getting any easier for them!
 
Hi. I'm not sure a buddy system is needed or would work well for adults. We are all so different you may be buddied with someone who has different needs. I believe encouraging people to look at this and/or the other UK site is best. We need far more trained DNs and this isn't going to happen. My previous surgery DN was an expert and my new one is good but newly trained and still learning.
 
What would be good is if the NHS ran a forum, local Diabetes clinics each run and manage their own forum section, could you imagine posting on your local forum about something, someone else also saying about the issue and then a consultant (you actually remember seeing 12 months ago) picking this up and doing something with it.

How many times have we seen posts on here about an issue - and the general response is contact your clinic, and they're waiting to hear back from the clinic - the clinic is the forum so to speak.
 
slip said:
What would be good is if the NHS ran a forum, local Diabetes clinics each run and manage their own forum section, could you imagine posting on your local forum about something, someone else also saying about the issue and then a consultant (you actually remember seeing 12 months ago) picking this up and doing something with it.

How many times have we seen posts on here about an issue - and the general response is contact your clinic, and they're waiting to hear back from the clinic - the clinic is the forum so to speak.
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An over stretched and an over worked NHS.
 
My experience in this space is limited, but I have experienced the offline community and it operates very differently. The difficulty is that those people participating in the online community, in whatever form that it is, have predominantly made the decision to take responsibility for their condition and are well on the way to accept it. What they need and use is therefore very different.

In the focus groups I've done with the offline community (which is, let's face it, 90% of UK T1s) the below describes the experiences of people in general:

"I recently met a number of other type 1s, few of whom really use the internet in relation to their condition or pay any attention to the Diabetes Online Community. The rate of blood testing was incredibly low and more disturbingly, the use of insulin in some cases was based on "Do I feel high?", with one person occasionally not taking insulin because they didn't feel they needed it. We see all the stuff about the National Diabetes Audit, but the reality is so far from what many of us in the DOC live."

So while we might consider forums and the internet as a great resource and available to many, the reality is that most don't look for information on the internet and the only brand they trust is the NHS and their trusted HCPs. Some agreed that experienced T1s would be beneficial to have on hand, and that needs to be brought into the care model more, but they need to be contextually correct. In addition, the use of role models is very lacking. Those of us who have had successful T1 lives, whether in business, sport or music, are not shown to the newly diagnosed. We are everyday "heroes" and the NHS and charities should work with us to show both kids and adult newly diagnosed that, actually, diabetes isn't life.

This whole structure is really difficult to address, as many are in a head in the sand position and getting over this is very hard!

Some discussion of it is here: http://crick-tech-munch.blogspot.co.uk/2016/03/engaging-and-disengaging-with.html
 
@tim2000s but if the NHS ran the forum, and plugged it to the newly diagnosed as THE source for info then maybe the percentage you mention can be turned on it's head?
 
I have been type one for 50yrs and still just get basics from nhs. insuling and a blood test meter which i think is the cheapest around. There is new technology out there why can't I have some. As many do...
I have just bought a Libre which is fantastic. Stopped me going hypo several times already. whats the point in giving pumps etc to young people if us older tax payers get little.
No point in developing anything new, if there was a cure i would not be offered it, even though i pay into the system.
 
slip said:
@tim2000s but if the NHS ran the forum, and plugged it to the newly diagnosed as THE source for info then maybe the percentage you mention can be turned on it's head?
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If that were the case you'd expect a much greater participation in trusted sources like charities.

I'm afraid much of the feedback was essentially I don't want to look for information about diabetes online. I'll do everything else though. It's less about the tools and more about the psychological aspects of accepting the position and deciding to do something about it.
 
I think having people in surgery who know about diabetes would be a great first step. At our place it's the practise nurse that does the appointments and she's probably been on just one or two courses (nor her fault just not her primary area of expertise). As a result I've asked to be referred to the local clinic which probably costs 4 times as much..
 
I would like to see a large scale trial for the libre, its annoying when new stuff comes out your almost certain it will improve your condition but its all about the cost, I know its everyone's personal responsibility to care for themselves best they can, if diabetics nurses dont really fully grasp that one set of information does not fit all, giving cheap meters out, restricting test strips, then have a carrot dangled in front of you, but its out your price range, I can see why some diabetics dont take it as seriously as they should do
 
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