This morning's clinic appointment...

[tim2000s]

The statement we regularly see about the NHS being underfunded annoys me. If you look at the below chart, in the U.K. individuals contribute far less of their own money for their health care, even compared to Spain and Italy, our largest close spend comparators in Europe.

I don't think underfunding per se is the problem. I think money source and spending are the real issues!

 

[AndBreathe]

Firstly, I'm T2, diet controlled, and provided I can manage to keep a handle on things, I am extremely unlikely to be referred into the hospital service. I am a massive supporter of the NHS, as we live for a proportion of the year overseas where I witness every day the impact of little or no public healthcare. Our NHS is underfunded and has massive issues in some areas, but it is there when the chips are down. Can anyone imagine how it must feel to receive a catastrophic diagnosis (having saved to see a doctor and have tests), and have absolutely no clue how you will pay for the necessary treatment? This happens every day in other countries.

I do empathise with UK GPs who are being spread incredibly thinly these days, dealing with one "epidemic" or another, whether it be diabetes, stress, back pain, obesity, lipids or whatever. Keeping an in-depth knowledge of all those subjects must be a nightmare and nigh on impossible for someone who also wants to have a life. But, I have less sympathy at the Speciality Registrar or Consultant level. Those people have chosen to work in this specialism, unlike GPs who might have been lumbered with the role practise title of "specialist diabetic doctor", without specialist training or even interest.

In my view, if I am referred for a specialist opinion, or to a specialist clinic, I expect advanced knowledge in that area.

Like Tim, I treat all my appointments like business meetings, and go with my objectives clear in my mind and my preparation done. To find someone apparently disinterested in my issues would really concern me. Yes, I would be annoyed for me, but even more deeply concerned for those less able to do their prep or make their cases so robustly. How do they ever move towards a better life?

I don't know how @tim2000s feels about the chances of SR he saw yesterday making a positive and robust case for his pump request, but I have to say, based upon what he wrote, my hopes wouldn't be buoyed. Tim, I really do hope I'm wrong there.

 

[pinewood]

Tim, sorry you went through this. I had been lucky enough to see the same consultant each time on my 6-monthly visits, except for on my last visit where I entered the room and only his assistant DSN was there ... I was told he "doesn't need to see me" because my A1c was "normal". Never mind if I wanted to see him! So I just showed her my Libre graphs and explained my daily routine. Most of it went over her head, especially sugar surfing, and she completely misunderstood the Libre print outs and thought I was hypo-ing all the time. Complete waste of my time. I'd be tempted to skip the next one, but I know that if I start having any problems later down the line it won't look good if I haven't been showing up for the check-ups.

On the topic of pumps, I was asked at my very first consultant appointment after diagnosis if I wanted one as he could easily put me forward. I said not now, but maybe in the future and asked how difficult it might be to get one later down the line. I was told in no uncertain words that it would not be a problem, as (and I quote) "there is always a way of ticking the boxes". I'm under St. Bart's, btw.

Whilst I appreciate the NHS in this country, it's a shame there isn't a "top-up" or other way of enhancing our health care. Private medical insurance just doesn't work for long-term conditions like T1D. I'm always very jealous when I read about people in the US who are receiving world-class care at, for example, the Joslin Centre, and who have incredible technology and support included within their employer-provided insurance package.

 

[iHs]

Tim you've gone about this latest clinic appt in exactly the same way I think as you did the last.
Stop the pump for 3 months before the next clinic visit and go back to injections again
Test bg levels every 2-3hrs and relax the low carbing a bit and the sugar surfing.

Show the consultant exactly what is going on for you every day so that they can use the data and what you have said, to make a case to request a CCG to fund you a pump. Have a few lows and some highs, it won't hurt for 3 months that's for sure.

 

[LucySW]

But I don't want to go to my consultant as a suppliant and gratefully accept a solution from on high. I want to basically run my self-care, and go to my consultant for support and partnership in that self-care. They are two different approaches. Informed, systematic self-care will always be better for general, everyday management.

 

[pinewood]

Tim you've gone about this latest clinic appt in exactly the same way I think as you did the last.
Stop the pump for 3 months before the next clinic visit and go back to injections again
Test bg levels every 2-3hrs and relax the low carbing a bit and the sugar surfing.

Show the consultant exactly what is going on for you every day so that they can use the data and what you have said, to make a case to request a CCG to fund you a pump. Have a few lows and some highs, it won't hurt for 3 months that's for sure.

It'd be a real shame if one had to sacrifice self-care simply to prove a point.

 

[tim2000s]

Tim you've gone about this latest clinic appt in exactly the same way I think as you did the last.
Stop the pump for 3 months before the next clinic visit and go back to injections again
Test bg levels every 2-3hrs and relax the low carbing a bit and the sugar surfing.

Show the consultant exactly what is going on for you every day so that they can use the data and what you have said, to make a case to request a CCG to fund you a pump. Have a few lows and some highs, it won't hurt for 3 months that's for sure.

So this is the point for me @iHs. I was showing the registrar what goes on for me every day. He had data containing all the carbs, blood tests, spot checks, exercise and CGM. It was in front of him on the table. He took one look at it and said I don't understand. I want to see individual readings in Diasend. That is not acceptable behaviour.

I don't think it is acceptable to have to deal with a system where, in order to game it, I have to feel worse and put my own health on the line to achieve an outcome. I'd reverted back to MDI before the appointment, but the reality is that the in clinic bloods with mostly MDI came out with the same results.

My frustration stems from the fact that for most of the conversation I spoke to someone who didn't want to consider the data he was being given because it didn't fit his model. I've found this a common problem with registrars.

 

[tim2000s]

And just to be clear, I've found the consultants I've met from St Thomas's to be extremely good. I just keep getting given registrars and they aren't.

 

[Shar67]

Very frustrating at least you get to a clinic, haven't yet been to one despite my GP referring me every 8 weeks since 2014.

 

[tim2000s]

Very frustrating at least you get to a clinic, haven't yet been to one despite my GP referring me every 8 weeks since 2014.

That's pretty dreadful. What have you done to escalate this?

 

[iHs]

So this is the point for me @iHs. I was showing the registrar what goes on for me every day. He had data containing all the carbs, blood tests, spot checks, exercise and CGM. It was in front of him on the table. He took one look at it and said I don't understand. I want to see individual readings in Diasend. That is not acceptable behaviour.

I don't think it is acceptable to have to deal with a system where, in order to game it, I have to feel worse and put my own health on the line to achieve an outcome. I'd reverted back to MDI before the appointment, but the reality is that the in clinic bloods with mostly MDI came out with the same results.

My frustration stems from the fact that for most of the conversation I spoke to someone who didn't want to consider the data he was being given because it didn't fit his model. I've found this a common problem with registrars.

Why couldn't the register see yr bg tests done on a bg meter on Diasend? Does the Libre handset not upload the bg data onto Diasend? If not, why didn't you use an alternative bg meter which could be uploaded to Diasend. Although fgm and cgm are available, it's not law that everyone should use one. I use cgm when I can afford to but I also bg test about 6-8 times a day as well and then compare the cgm data with the bg meter data to see just how good or bad cgm is. My hospital uploads my bg meter data and my pump all onto Diasend including cgm but I already have a pump whereas officially, you don't.

 

[Shar67]

I have been to pals, I have spoken to diabetes consultants secretaries who say the haven't received referral though I've sat beside GP when he has done it, I have emailed MP who contacted PALS, yesterday I got an appointment for retinal eye test 1st one so hopefully the clinic isn't far behind.

 

[tim2000s]

Why couldn't the register see yr bg tests done on a bg meter on Diasend? Does the Libre handset not upload the bg data onto Diasend? If not, why didn't you use an alternative bg meter which could be uploaded to Diasend. Although fgm and cgm are available, it's not law that everyone should use one. I use cgm when I can afford to but I also bg test about 6-8 times a day as well and then compare the cgm data with the bg meter data to see just how good or bad cgm is. My hospital uploads my bg meter data and my pump all onto Diasend including cgm but I already have a pump whereas officially, you don't.

He tried to upload the data to Diasend. And failed. The Libre is Diasend compatible. I had to show him my Diasend which had both finger prick and FGM data. This is the finger prick data. Again, it doesn't show massive issues because I manage them out, rather than allow them to get in the way.

Granted there's not 12 weeks of it, only a couple, as I tend to finger prick more when I've not got a good sensor in place.

No it's not law that everyone should use FGM and CGM, but shouldn't a specialist in a specialist clinic be able to read them? Especially when it was being provided in Diasend as well...

 

[Dave...]

A Friend of mine (who is a GP and has taken a keen interest in T1 after I was diagnosed) 'suggested' that I 'could' stop thinking about self funding CGM, low carb diet, aiming for fine targets and instead simply go off the rails for a short while - around 6-8 weeks before the next visit to the NHS - as this is one if the ways to get a pump... As is the case with most things in this country - if you have integrity and look after yourself well (I understand that some people can't), then help isn't forthcoming when you really need it...

 

[tim2000s]

A Friend of mine (who is a GP and has taken a keen interest in T1 after I was diagnosed) 'suggested' that I 'could' stop thinking about self funding CGM, low carb diet, aiming for fine targets and instead simply go off the rails for a short while - around 6-8 weeks before the next visit to the NHS - as this is one if the ways to get a pump... As is the case with most things in this country - if you have integrity and look after yourself well (I understand that some people can't), then help isn't forthcoming when you really need it...

I have considers this, but it relates to an earlier point in the topic about acceptability.

 

[RuthW]

A Friend of mine (who is a GP and has taken a keen interest in T1 after I was diagnosed) 'suggested' that I 'could' stop thinking about self funding CGM, low carb diet, aiming for fine targets and instead simply go off the rails for a short while - around 6-8 weeks before the next visit to the NHS - as this is one if the ways to get a pump... As is the case with most things in this country - if you have integrity and look after yourself well (I understand that some people can't), then help isn't forthcoming when you really need it...

That never worked for me. As I've said earlier, I left the country, went private and got my pump. Yes it's about fifteen years out of date compared with what you get in the UK, but it's better than MDI for me. And, by the way, even the Turkish health system funds pumps. I didn't use the system, as I wasn't working at the time (except for the Other Half) but I may start claiming once my new work permit comes through.
My sister was diagnosed in France - straight onto a pump, no questions asked, and also funded through the state health system because her partner was working. They weren't even married at the time.

I think it's time to stop excusing the poor diddums NHS and the poor diddums overworked doctors. When a developing country like Turkey is knocking your provision out of the ballpark, it's time for diabetics to get angry. Having a lot of patients is no excuse. If they kill us all off, they'll have fewer. Is that the idea?

 

[donnellysdogs]

I have been to pals, I have spoken to diabetes consultants secretaries who say the haven't received referral though I've sat beside GP when he has done it, I have emailed MP who contacted PALS, yesterday I got an appointment for retinal eye test 1st one so hopefully the clinic isn't far behind.

Please approach the nhs patient advocacy group for your area.. They will help you formulate a complaint that will be listened to and you will get an appointment...

If you have seen GP send the request then you are quite entitled to approach the advocacy group to help you log a comaint with your hospital for not actioning your GP request..

 

[tim2000s]

This morning I am sending a letter over to the Lead Clinicians at the clinic and will let them respond in due course.

As a foot note to this, I realised that one of the things I could never say about my interactions with Diabetes Clinics over the past 20 years is that I've ever had a relationship with the consultants at the clinics. My consultant:registrar ratio is something like 1:3 or 4.

That probably says a lot about the way clinics operate and how pushy I've not been.

 

[tim2000s]

Well then, here's the update. I have an appointment on 14th March with the Pump Clinic.

I didn't send the letter yesterday. I got to the post office and turned around, deciding to give them enough time to see if everything went well. It seems to have.

I still think there were a number of aspects of the appointment that need to be addressed, so I will review and reword what I had written as I feel that a fair amount of it still stands.

 

[LucySW]

This having T1 lark is nothing if not educational, isn't it!