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Next clinic appointment - topics for discussion with the Consultant and DSN

tim2000s

tim2000s

Expert
Retired Moderator
Messages
8,936
Location
London
Type of diabetes
Type 1
Treatment type
Other
I've a little under a month till my next appointment. So far on the list of discussion topics are:

Sugar Surfing
Injection Ports
Symlin and the glucagon metabolism
What the Libre has taught me and many others about insulin timing and bg spiking, leading to split bolusing
My results (although I'm in line for a slightly higher Hba1C thanks to fewer hypos, driven by the Libre)
MDI management and use of basal and bolus
A pump (please)

I think this could become a very interesting conversation....
 
Hey Tim,
Please add this one more question: Where is my cure?
Look forward to hearing all the answers.
 
Well... That was what I'd describe as frustrating and underwhelming. I'm pretty sure the guy I saw was a registrar, because if he was a consultant he was very underwhelming.

After being given a 9.40 appointment and being told to arrive early to get bloods and urine samples analysed, I arrived at 9.30. The nurse saw me for bloods at 9.50 and I finally saw the chap at 10.40. Only an hour late then. Nothing like managing your clinic properly... Made sure I have the first appointment next time.

Onto the questions I had:

Dynamic Diabetes Management (Sugar Surfing) - Nope, never heard of it. Followed by a brief explanation of what it is and how CGM enables it.

Injection Ports - No, never heard of them. Show off the one I'm wearing and explain about the price, that there are two types and how they are useful when sugar surfing as they reduce subcutaneous damage. Express that it would be good to get this stuff on the NHS.

Symlin and the glucagon metabolism- No, never heard of Symlin. Brief discussion of Amylin and Beta cell loss, and research about how glucagon plays a role in increasing blood glucose, why suppressing it would be a good idea, and a bit about the Krebs cycle.

So, you are starting to get the picture on what happens when I asked questions about stuff that anyone involved in a research hospital and endocrinology should at least have some idea about. Or so you would think.

What the Libre has taught me and many others about insulin timing and bg spiking, leading to split bolusing - I asked him when he thought someone should inject their Novorapid, Humalog or Apidra. His answer was at the meal or up to ten minutes before. When i told him he was wrong, and asked him to guess how long it took to take action, he was shocked. "As long as Actrapid?" he said. "No," I said, "Less time than Actrapid." I told him that the hospital needed to work with all their patients using CGMs and MDI to really understand the profiles of these insulins, and that relying on the manufacturers claims was not good practice or effective. Basically, they never bother to confirm the claims of the makers.

He also hadn't heard about Afrezza but understood the idea of getting insulin directly into the blood ahead so that the Liver can be used to do the heavy lifting in relation to glucose.

My results (although I'm in line for a slightly higher Hba1C thanks to fewer hypos, driven by the Libre)/MDI management and use of basal and bolus - Very happy with the lower SD/Average calculation and that the Hba1C on the day was the same as two weeks ago. Went into a detailed discussion about the "basal profiles" I have concocted and why, and further discussion about why CGM really helps with this stuff. he admitted that were it up to him he'd give all T1s CGM.

A pump (please) - Didn't get the opportunity to discuss this. Got kicked out as he felt we had used too much time. Something I will raise with the DSN, and to be honest, if I can get a new job that pays me more, I'll pay for it myself, like I seem to do with everything else related to managing my diabetes more effectively.

With all of the things on the list he hadn't a clue about, he said he'd speak to the senior consultant and try and get answer from them, then call me and let me know. I'll have to see if that happens.

All in all a very odd appointment, where I felt that I spent 45 mins educating someone who really should know about this kind of stuff. It's fine when you speak to the senior consultants and specialist registrars who are actually involved in the research and can provide useful feedback, but the more junior guys who are there to just take your details and make sure everything is okay really are a waste of time to an educated patient who wants to know more. I'm already kicking up a fuss to make sure I see someone who knows about T1 properly next time.
 
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How very frustrating. Do you not get told the name of the consultant you will see when the appointment is first made? Or was it just that you had to unexpectedly see somebody else on this occasion? When I received an appointment letter with somebody I hadn't heard of I called and changed it to the consultant I've been seeing since diagnosis. Given the complexities of T1 I feel very strongly that (where possible) we should have consistent care and be able to see the same person at each appointment. Only then can they truly get a picture of what's happening with our control over time and give informed and useful advice.

I'm surprised he hadn't even heard of Symlin; it's something I've read a lot about and I am very interested in it. It puzzles me why it's never mentioned in the UK but appears to have a wide uptake in the US. On that thread, we may well have the NHS in the UK (which, don't get me wrong, is excellent in principle) but the care and treatments that T1s with decent medical coverage in the US receive is, from my reading and discussions, literally miles ahead of the care we receive in the UK. It's very disappointing.
 
Basically, I didn't understand the way the system works at this clinic. The letter says "under the care of" and mentions a name. This is the senior consultant and not who you will see. Your file is put into one of the present doctors pigeon holes and that's who you see.
You then find out when they call you in. At arrival you can request who you see, so I will do this next time. As I was diagnosed a long time ago, in a galaxy far, far away, and care has changed a lot in that time, I'm getting to grips with the way this clinic works.

On the topic of available solutions in the UK, this is also what drives me nuts. Most of the more interesting developments in D care are made available in the U.S. And other EU countries precisely because they have medical insurance and this stuff is, in reality, quite expensive. I think the model in the UK should be that the NHS provides free at the point of use care, e.g. you can get the base insulins required, MDI, maybe pumps, etc, but there should be "top up insurance" that allows access to the more advanced and expensive treatments, CGM, Afrezza, Symlin, etc.
I know loads of people hate this idea, but I think it works and would allow non-essential other medical procedures to be undertaken not at the taxpayers expense.
 
tim2000s said:
On the topic of available solutions in the UK, this is also what drives me nuts. Most of the more interesting developments in D care are made available in the U.S. And other EU countries precisely because they have medical insurance and this stuff is, in reality, quite expensive. I think the model in the UK should be that the NHS provides free at the point of use care, e.g. you can get the base insulins required, MDI, maybe pumps, etc, but there should be "top up insurance" that allows access to the more advanced and expensive treatments, CGM, Afrezza, Symlin, etc.
I know loads of people hate this idea, but I think it works and would allow non-essential other medical procedures to be undertaken not at the taxpayers expense.
Click to expand...
I couldn't agree more. It's a no-brainer when you consider that, in most cases, the gap between the "top up payment" and the actual cost will be smaller than the amount the NHS will save long-term on treating complications etc.

It's frustrating that there is no sign of Symlin on the horizon in the UK. Presumably it's entirely down to cost. The research studies I have seen show truly excellent results, especially in relation to reducing people's postprandial levels.
 
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tim2000s said:
Basically, I didn't understand the way the system works at this clinic. The letter says "under the care of" and mentions a name. This is the senior consultant and not who you will see. Your file is put into one of the present doctors pigeon holes and that's who you see.
You then find out when they call you in. At arrival you can request who you see, so I will do this next time. As I was diagnosed a long time ago, in a galaxy far, far away, and care has changed a lot in that time, I'm getting to grips with the way this clinic works.

On the topic of available solutions in the UK, this is also what drives me nuts. Most of the more interesting developments in D care are made available in the U.S. And other EU countries precisely because they have medical insurance and this stuff is, in reality, quite expensive. I think the model in the UK should be that the NHS provides free at the point of use care, e.g. you can get the base insulins required, MDI, maybe pumps, etc, but there should be "top up insurance" that allows access to the more advanced and expensive treatments, CGM, Afrezza, Symlin, etc.
I know loads of people hate this idea, but I think it works and would allow non-essential other medical procedures to be undertaken not at the taxpayers expense.
Click to expand...
 

Hi, Tim2000s,i do not agree at all, the NHS has limited money and has to ration - there are many diabetics with very severe complications who need care - who knows how things will pan out for any of us, or what care we may need - things happen, unexpected things, other diseases which impact on diabetes can appear, Type ones can also get a whole range of other autoimmune diseases - these may complicate things a lot, any one of us may need unexpected help.......There are private hospitals - one at London Bridge - you may have said in another post you went to a hospital nearby? though i don't think you will get more than a 45 mins appointment! you may even find that one of the consultants in your hospital is over there as well and maybe that could be a top up system, in a way - i do not know if patients can combine both? My NHS appointments are usually fairly short - the consultants are essentially there to look at blood tests, to find out about problems and to solve them as best as possible, often with drugs. It would be nice to have longer but there is a queue of people with other problems waiting. Ann
 
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There is always a queue of people waiting Ann, but if it is a teaching and research hospital, those working there should be involved. If there are methods of helping reduce long term complications and therefore cost of care, should there not be a business case to use them? As @pinewood says, the empirical evidence from the U.S. Shows huge benefits in control of bg variance with Symlin so why wouldn't we want access to it. What is wrong with the idea of top up insurance if things are going to be unavailable on the NHS? It gives greater access to those with lower incomes than simply saying self fund.
 
tim2000s said:
There is always a queue of people waiting Ann, but if it is a teaching and research hospital, those working there should be involved. If there are methods of helping reduce long term complications and therefore cost of care, should there not be a business case to use them? As @pinewood says, the empirical evidence from the U.S. Shows huge benefits in control of bg variance with Symlin so why wouldn't we want access to it. What is wrong with the idea of top up insurance if things are going to be unavailable on the NHS? It gives greater access to those with lower incomes than simply saying self fund.
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I would have loved to have had discussions, and learnt more from hospitals years ago, but the problem then was time, and consultants are much more time limited now than they were 35 years ago - to offer any new treatment might possibly lead to savings down the line, but the savings would have to be so clear that the extra time and monitoring to bring them in would have to be justified. There just are not enough diabetologists, as far as i can see. A patient may be able to buy some of the consultants time at a private hospital, but i cant see how there could be a two tier system in an NHS hospital, with patient A buying extra time than patient B. I think we just differ in our views! Re Symlin, years ago, when the news came out that most Types ones were lacking in amylin, and C-peptide, and maybe other things, i asked my consultant and was told that they had done research and had not found it what had been hoped. I do not know the situation now, I think i read of ongoing safety issues for some re lows? I think the NHS is rather careful re what new developments come in. For instance, pumps virtually stopped in the UK for some years, as far as i recall, due to trials that found there were significant dangers, and they did not get started properly until later than a lot of other countries
 
I can't believe you're not able to book an appointment with a specific Endo that gets to know you and that you're comfortable with, is this 2015 or 1915?
 
@ann34+ I think one of the side effects of the NHS is that new treatments take a lot longer to be made available. In countries where it is down to health insurance to pay, new treatments are typically accessible relatively quickly after approval. In the UK there has to be a clinical study that demonstrates that in a significantly representative percentage of the users a benefit is seen. Even then, if existing treatments are being used successfully, the new ones will not be made available without a massive fight on behalf of the end user.

Likewise, as a government entity (no matter how you look at it) the safety of a solution is given additional scrutiny as the ultimate payout of a class action for lack of safety is the government and they have far too large a wallet to aim at.

As a result we are left with a system that works fine in the case where Mr and Mrs normal go and see a doctor and need dealing with according to standard guidelines however, if we want to take advantage of treatments that have demonstrated benefits in other countries, we are hamstrung by the red tape and unable to do anything unless it is entirely out of our own pocket. We cannot use any kind of insurance or part payment scheme to assist with that.

It's not about access to the doctors themselves, it's about access to the new ways of dealing with out condition as a T1 in which I find my frustration.
 
tim2000s said:
@ann34+ I think one of the side effects of the NHS is that new treatments take a lot longer to be made available. In countries where it is down to health insurance to pay, new treatments are typically accessible relatively quickly after approval. In the UK there has to be a clinical study that demonstrates that in a significantly representative percentage of the users a benefit is seen. Even then, if existing treatments are being used successfully, the new ones will not be made available without a massive fight on behalf of the end user.

Likewise, as a government entity (no matter how you look at it) the safety of a solution is given additional scrutiny as the ultimate payout of a class action for lack of safety is the government and they have far too large a wallet to aim at.

As a result we are left with a system that works fine in the case where Mr and Mrs normal go and see a doctor and need dealing with according to standard guidelines however, if we want to take advantage of treatments that have demonstrated benefits in other countries, we are hamstrung by the red tape and unable to do anything unless it is entirely out of our own pocket. We cannot use any kind of insurance or part payment scheme to assist with that.

It's not about access to the doctors themselves, it's about access to the new ways of dealing with out condition as a T1 in which I find my frustration.
Click to expand...
I agree with a much of the above - the uk is, or has been, slow to bring in new ideas, especially re diabetes, even when it has been involved in the initial research. Also, at least in the past, any benefit had to be justified in financial terms - a big improvement in quality of life alone did not seem to be taken into account much. But i do think this is a lot about shortage of time/money/ doctors- implementing different treatment takes more patient supervision, money etc.
P.S. re the injection ports, i am curious , and did not know they existed. Do you/others prefer these to injections? for years i had 8 plus injections every day (on BBC radio one of the most eminent uk diabetologists had, in the early 1980's, urged diabetics to 'learn to love the needle'.) the problem then was not the injections, but the lack of testing strips - i was lucky to get 4 a day, a lot of people still had only urine strips. I would love to try CCM but it has never been offered.
 
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@ann34+, I'm effectively in the position of topping up my NHS care out of my own pocket. The Abbott Libre is CGM lite, and the reason I signed up was the low cost of entry unlike the Dexcom, which I first looked at a couple of years ago.

The injection ports are also something I pay for. They reduce the number of skin penetrations by a factor of 30-50, much like a pump does, meaning injection/infusion sites should remain good for longer.

My experience with both these items has been limited promotion or no knowledge within the NHS simply because there is no NICE approval for either. As a result, those less tenacious in their desire and ability to research better treatment options just don't know about them. Do I like the injection ports? Yes, very much so.
 
tim2000s said:
@ann34+, I'm effectively in the position of topping up my NHS care out of my own pocket. The Abbott Libre is CGM lite, and the reason I signed up was the low cost of entry unlike the Dexcom, which I first looked at a couple of years ago.

The injection ports are also something I pay for. They reduce the number of skin penetrations by a factor of 30-50, much like a pump does, meaning injection/infusion sites should remain good for longer.

My experience with both these items has been limited promotion or no knowledge within the NHS simply because there is no NICE approval for either. As a result, those less tenacious in their desire and ability to research better treatment options just don't know about them. Do I like the injection ports? Yes, very much so.
Click to expand...

Thanks for the info, Tim2000s, I have just had a look at the pictures of the injection ports on your blogspot, which do look a lot like pump sets. I can see some might prefer them , but they would not have been for me - i would rather do 15 injections than put in one infusion set, even though, due to necessity, i am fairly ok with the steel pump sets. I noticed there is also info on the CGM on the blogspot, will look at later, thanks.
 
I received the letter from the clinic detailing our conversation, and the chap did raise a couple of topics with the consultant.

The one I'd say was most interesting is Symlin. The reason that we don't see it in use in the UK is that it isn't licensed here.
 
tim2000s said:
The one I'd say was most interesting is Symlin. The reason that we don't see it in use in the UK is that it isn't licensed here.
Click to expand...
Not particularly helpful unless they explained why? I was talking to an American T1 on a flight a while ago and she had been taking Symlin for 6 months. She said her postprandial levels are never above 8 on Symlin and that she eats a particularly unhealthy diet. There are countless over stories across the net.
 
Oh I know.... I have suspicions as to why. I expect it is expensive and isn't widely known about by the UK diabetic population.

I also suspect that not very many endos properly understand the glucagon metabolism and thus haven't recognised the requirement to control this too.

My next step is to directly approach the consultant I didn't see and ask more questions.
 
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