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What would be your ideal care model for the NHS with your Type 1 Diabetes?

Discussion in 'Type 1 Diabetes' started by tim2000s, Nov 11, 2015.

  1. tim2000s

    tim2000s Type 1 · Expert
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    Given the conversation I had with Partha Kar at #DPC2015 today, we have a huge concentration of T1 diabetics in this forum. Let's work out what the model of care we would like to see is and get it across to the NHS, and let them work out how to implement it. This is the thread to do so!
     
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  2. TorqPenderloin

    TorqPenderloin Type 1 · Well-Known Member

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    I live in the USA, but I'd be happy to try to add value to the the thread by sharing how things compare here vs. in the UK.
     
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  3. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    I think the main thing is for medical professionals to listen to us and not to think we are clueless with no or little understanding of what we are doing and how an individual diabetics body works, because what works for me wont work for someone else with type 1. I am not a number or a hello. blah, blah, blah, good bye.................... next please.
     
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  4. Jaylee

    Jaylee Type 1 · Expert
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    Out of office hours & even weekend clinic appointments would be a good start...
     
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  5. TorqPenderloin

    TorqPenderloin Type 1 · Well-Known Member

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    Forgive my ignorance, but do you guys have an "Online Portal" to speak directly with your healthcare team?

    That's one thing I find very valuable that is relatively new technology here in the US.

    Its basically a private and secure website for patients to access their health data, prescription info, etc. It also allows me to send secure messages to my healthcare team (healthcare laws in the US don't allow doctors to email private info).

    I used it this morning, for example, to ask my doctor to switch my prescription from a 30-day supply to a 90-day supply (the result of my insurance being difficult).

    Long story short, it's been an awesome tool to review my health data history and get quick responses from my doctors. I can see exactly what my blood test results were from particular dates, track my vitals over time, etc.

    Hopefully, you guys already have something very similar. If you do, forgive the lengthy post.
     
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  6. Jaylee

    Jaylee Type 1 · Expert
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    Yep, I do.. It's called "system online". I can make requests for prescriptions appointments & such like.. Any response comes back as a "cell phone" mobile text.

    But it would be nice to not have to duck out of work for the face to face stuff..
     
  7. tim2000s

    tim2000s Type 1 · Expert
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    How about with regard to involvement in your care, feedback to you regarding your conditions, advice, expert information, etc? As Partha mentioned, many use Google to find out more in the areas that they are not experts. Are you okay with this? How do you filter and trust information? Is there something that could help with this?

    What about the extension of these on-line communities to the real world? We meet up regualrly (thanks @ewelina). Could the clinics use us to assist newly diagnosed people? Is there a level of disintermediation that could take place using expert patients? Questions, questions...
     
  8. pinewood

    pinewood Type 1 · Well-Known Member

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    I don't think there is a one-size-fits-all with regards to involvement and advice etc. Some people will naturally need more hand-holding whilst others will be more independent and inquisitive and better able to work things out for themselves. I trust a lot of online content (if from reputable sources, e.g. WebMD etc.) more than I trust the advice of a GP. I'd rather ask questions on this forum and get advice from a cross-section of independent experts who have lived with T1 for years and years than from my GP who is not a specialist and often has no idea about what I'm asking.

    The "online portal" concept is a great idea. My GP practice uses the portal on "patient.co.uk" whereby I can make appointments, order prescriptions and see a (very censored version) of my medical record. This is a good start, but it would be great if this could be extended to be more comprehensive and to include a detailed breakdown of past A1c/cholesterol test results etc. so that everything was in one place and easily accessible for review. Even better if this could link with Diasend etc. and somehow keep a nice record/graphs of CGM results.

    I think it's a real shame that the UK is so far behind in respect of CGM and believe the NHS could do so much more to help us. In my opinion CGM is absolutely invaluable to gaining tight control and I can't even imagine living with T1 without it. I think it's very disappointing that - for those of us who spend our own money on CGM - the cash the NHS is saving on (a) not having to prescribe us additional test strips; and (b) not having to treat complications or deal with hypo/DKA hospital admissions which are avoided thanks to CGM, can't be distributed by way of a rebate/CGM contribution fund. I think it's also a shame we are missing out on other treatments too, such as Symlin and Afrezza.
     
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  9. AndyS

    AndyS Type 1 · Well-Known Member

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    A few things that I mull over now and the but then dismiss on the grounds that "they would never go for that"

    - Patient mentors: As many of us on here are well aware there are some people that have immense amounts of knowledge and are more than happy to share it along with their experience. I often think that if the specialist could essentially build up a network of Patient Mentors that have completed some formal training they are happy with and have had some kind of validation and sign off by the Dr's then that could save them a LOT of time with new T1's that really are still feeling their way. I don't suggest that Mentors would replace the HCP's but augment them in the community since I think having someone that knows where you are coming from would be very beneficial to many folks. Obviously there would need to be some kind of agreed communications channels so that the mentor could quickly and easily engage the HCPs and keep them in the loop.

    - Longer period prescriptions or Self Signing authority: A sticky one I am sure but I for one am sick of how much time I end up wasting chasing prescriptions each month. I have asked about 90 day prescriptions and been given a resounding no. We are always going to need the insulin and associated supplies so why the hell they couldn't loosen things up there a little is annoying and it would sure as hell give a little time back to the Drs, even though with electronic slips they are a tad faster for them now.

    - Full access to all of our tests results: And I mean like they enjoy in the US in some places. It is not beyond the realms of technology to offer this up in a "Simple" and "Expert" mode. So for people that don't really get what the numbers mean a traffic light system they can see with certain things like A1c graphed over time so they can see how they are doing long term. Expert mode offering the actual numbers under the hood, I know I often want to refer back to some things and have to dig through dozens of photocopies that come in several different formats.

    - CGM: I too believe that this is a major blind spot with the NHS though I also believe that it should be looked at as part of an integrated system so that the data syncs to your core records so that the HCP's do actually have a much more complete picture of things. I am not suggesting that they will always look at them but if the data is there then it opens things up for them having Machine Learning algorithms being able to spot trends that could be of concern and alerting your team so that they can potentially help you sooner rather than later.

    - Community interaction: I get that the Nurses and Dr's are all pretty busy though I think if they could be encouraged to get involved in communities like this, even if they are just reading what the mood and hot topics are, I think they would learn a hell of a lot and be able to offer a better service to patients. This sort of thing would require a mind shift from managers to actively support them taking the time to read up on these sorts of places.

    - Openness to patient anecdotal evidence: We have all been there. HCP telling you that you should be doing things one way but you KNOW it works better for you another. They need to have a frameworks that would allow them to better collect and asses patient experience such that they don't end up just dismissing it out of hand. It would almost certainly accelerate how quickly they can respond to trends and tailor treatment regimens, or identify things that outright don't work so that they can work out why and then have solid facts when they need to persuade us otherwise :)

    But like I said, this is all stuff I mull over from time to time but I seriously doubt the will and drive for the NHS to implement any of them will exist, certainly not while I am still kicking about. Some of them would send them running for the hills scared silly that it is allowing patients to make medical decisions, them not realising that we HAVE to do that multiple times every single day just to live.

    That's my thoughts there anyway.

    /A
     
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  10. jodysd6

    jodysd6 · Well-Known Member

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    I agree with things like a more detailed online access system so we can review our records and test results easier, my clinic does use Diasend and so that is a a step in the right direction but it's frustrating the red tape required to review your own records.

    I also think that the lack of CGM funding is also somewhat short sighted, I self fund libre but think that a dexcom could also help further, but to even be considered for one it seems you have to be in dire straits and surely having earlier access may avoid you getting to that point, I understand not everyone wants or would he trhe most out of a CGM so maybe like in the US you would need to show you are using it properly and acting on it. I can jut about afford libre but dexcom would cost almost 1/4 of my annual income and that is just not attainable for a lot of people.
     
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  11. DunePlodder

    DunePlodder Type 1 · Well-Known Member

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    I'd echo the thoughts about CGM. As jodysd6 says the attitude is very short sighted. I feel that by self funding I am saving the NHS a lot of money. If full funding is out of the question, perhaps it's time that the NHS looked at shared patient/NHS funding.
     
  12. ann34+

    ann34+ Type 1 · Well-Known Member

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    My GP also uses patient.co.uk. Re your blood test numbers many hospitals are bringing in PatientView and renal depts in some teaching hospitals already use it - patients can access all their numbers online , many diabetes depts are i think already signed in to this, mine is not yet but will be.
     
  13. lizdeluz

    lizdeluz Type 1 · Well-Known Member

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    This would be good because it often seems that our systems are more than poles apart. I'd like for you to tell us otherwise.
     
  14. lizdeluz

    lizdeluz Type 1 · Well-Known Member

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    Great idea @tim2000s. You've said what I've always wanted to say. Now where am I going to start? Might take a few hours after a busy day.:)
     
  15. lizdeluz

    lizdeluz Type 1 · Well-Known Member

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    No, I'm not ok with googling, though I do it constantly for things diabetes-related. Obviously I won't automatically trust the info given, I have to have faith in the author through his/her credentials gleaned elsewhere. Tbh, I'm ashamed to admit even on this forum the extent of my ignorance about diabetes. Like many other PWD of my generation, I've had to adapt radically from the care and advice given when I was diagnosed. Much of that I've done on my own, while science leaves many of the DSNs and consultants lagging behind. I try to make good by researching, reading the forum avidly and constantly, googling, using recommended websites, contacting Accu-chek, things like that, trying to get through to my clinic - that never seems to work: we used to have a kind of drop-in centre which was brilliant but I feel it has gone the way of all things..... or maybe I've reached a cut-off age, where response is not prioritised any more? Despite my feeling ignorant, I feel I do have a lot of experience I could share with newly-diagnosed or any other PWD, but I don't perceive this as welcome in the diabetes clinics at the present time. It's a wasted resource, if this forum is anything to go by.
     
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  16. mrspuddleduck

    mrspuddleduck · Guest

    I would like to see 'care partnerships' instead of care plans, models, programmes, packages etc. I am sick of the culture where health professionals do things 'to' me instead of 'with' me because they appear to think I should be pitied or treated as a nuicance or stupid just because I don't have a perfectly working body!!
     
  17. Lozj82

    Lozj82 Type 1 · Well-Known Member

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    I lived in the UK till last year when i moved to Italy for my husbands work and there are a couple of things that they do here which i find really good.

    The prescriptions - i do have to go and see your GP everytime i want them (its the way its done here but you dont make an appointment, you just turn up) and i can tell him how much of stuff i want, i get 6 boxes of 50 strips at a time and i can go back for more when needed, there is no 'its not time for your next lot'.

    Blood tests - i can go for my my blood test in the morning and the results will be ready in the afternoon, i can choose to go and pick them up to give to my dr or log on at home and print them off to give to my dr, it has all the results on there from cholesterol to liver function etc

    Dr - i feel like my diabetic dr actually has time for me here (i guess it depends on where you live in England/what dr you have as to how you feel about this). I have just been given a dexcom for 2 weeks so we can see what is happening and try and make some adjustments and if i say this works for me she is like 'ok different things work for different people'

    I'm unsure of how funding goes for dexcoms etc here but like other people i feel the UK is very much ebhind times, i have only had the dexcom just over a week and feel i am really going to miss it when it goes back, its so hand to just keep checking without having to prick myself every half hour.

    Since here i have managed to get my levels down from 8.9% to 7.1%, it might be a number of things and not just down the the things mentioned above (i do have more time on my hands to actually look after myself i feel)
     
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  18. donnellysdogs

    donnellysdogs Type 1 · Master

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  19. donnellysdogs

    donnellysdogs Type 1 · Master

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    @AndyS

    Full results etc are available at some GPs Lready if you are an online patient.

    Ie tonight I looked up my documents ref my recent op and the letter from the consultant to my GP was already there for me to read.

    This has to be done by all GPs by April 2016 in England and like mine-already available.

    Its up to the patients to register online.

    Wven my childhood vaccinations and illnesses and problems and gp consultations are listed...
     
  20. donnellysdogs

    donnellysdogs Type 1 · Master

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    @pinewood

    You will get full access to records in England by Apr 2016 in England. The records available for patient to read are excellent. I already have all access to mine. Our GP uses patient access and our practice has this already.
     
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