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NHS vs NHS-Scotland: Who Treats T1s better?

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Mark&Phoebe

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Hello all,

I currently live in America, but am planning to return to the UK in a couple of years. The reason for my question is that I'm wondering which of the two is more willing to provide insulin pumps/cgms to a T1, and which seems more generally 'sensible' in how they treat us?

Right now, I'm fortunate to have very good insurance through work which pays 100% of my pump (Omnipod) costs, and 100% of my CGM (Dexcom) costs as well, but leaves me to pay about £300 per year for my insulin and test strips. I really want to hang onto the pump and CGM as I find them essential to my well-being.

I've looked up what I can, and it seems that, as long as the doctor I see agrees I need these, it shouldn't be too hard to get approval. But talking to actual users would be much more useful, I think.

I very much appreciate any insights you can share regarding your experiences, thank you.
 
I only have experience of England and would say it is a postcode lottery whether you get a pump or CGM and the odds of getting the CGM are low.
Some areas allow you to chose your pump. Others give you the choice of one pump or injections and the Omnipod is one of the more expensive pumps.

For me, I have an Animas pump. This was the only one on offer. Currently, it looks likely to be replaced by a Medtronic when the warranty expires. There is no other choice.
If I want a CGM or Libre, I have to fund it myself. The criteria for Libre are very tight (e.g two hospitalisation with DKA or two severe hypos requiring support ... which would result in a loss of driving license) and I do not qualify. The criteria for a more expensive CGM such as Dexcom are even tighter.

Insulin and test strips are covered by prescriptions which are paid for in England if you have type 1 diabetes.
 
It may be wise to refrain from setting anything in stone. If one is to believe the doom mongers we won't even have any insulin available after Brexit!

I don't know how things work in Scotland, but in England the local Care Comissioning Groups are issuing guidlines about who gets the new tech. Whilst a few areas are freely prescribing it, in others you have to have very poor control of your glucose levels to get it.

By the time you get here, the situation may have improved, but then again...........
 
What about just moving to Canada? They seem to like folks with diabetes there.
 
Hhm, @Mark&Phoebe , that's a difficult one!

I'm in Scotland, Edinburgh, where NHS Lothian has one of the most liberal policies anywhere in the UK if you want Libre - if you're T1, you'll get it, and we bling it up quite easily with blucon or miaomiao to make it comparable to dexcom.

I've no idea about pumps. I'm MDI, happy with that, but the last couple of six monthly consultations I've been to, the docs have said, fancy trying a pump, we're going to get you guys on closed loops in a few years time, so try getting used to it.

It's still a massive post code lottery here at at the moment on the cgm/pump front - don't expect to walk in from America and have the same choices as your insurers will provide, but you'll be getting your insulin and strips for free.

Here's a link to ECED, a collaboration of the Lothian hospitals doing diabetes stuff:

http://www.edinburghdiabetes.com

We also do some really good festivals!
 
I only know about England, but for me I was offered the omnipod fully funded but not cgms or even libres yet. If you want a cgm funded by the NHS then you have to fit a certain set of criteria eg no hypo awareness or play sport at national level. I think the dexcom is a much more widely avaliable system in the US, I don't know of anyone in the UK using it personally - but that's not to say you couldnt get it, but you would most likely have to self fund unfortunately. Test strips, insulin, and any other consumables, however, are fully covered by the nhs.
Hope that helped and good luck with your move over here!
 


Hi,

I'm under NHS Highland (in Scotland) and have been on an Omnipod for one year. As you'll know the control is hugely improved on it and the health service are right behind it. This week I'm going onto the Freestyle Libre, also funded by the health board. It might help from our point of view that we have had a leading diabetes professor, Sandra McRury, working out of Inverness for almost 30 years. She has been a real pioneer. I notice someone saying the Omnipod is a more expensive pump but over a year, the latest research says it comes in as one of the cheapest; looks like the initial layout appears prohibitive.

As others have said, it depends which health board you land up living under...

Good luck.
 
I get pip for having mythocondrial type 1 diabetes complications and complications through melas syndrome (rare genetic condition) anyway I had to go to Glasgow for a face to face when it was dla and it was a degrading process used by a private company to make people give up the dla process and basically call them liars, my point is it a long process. I go down to the genetic clinic in Newcastle as well
 
I think eventually the pump/cgm combos will be widely available but from my experience living in Surrey Downs (just outside London) I can get a tandem basal iq with Dexcom but have to apply for special funding to do so. My hospital services are Epsom/St Helier btw.
I am aware of a trial for pump/cgm s running out of Guildford too (that's a university hospital and its a very good centre). Kings' Hospital London is also a leader in best practices for type 1s I believe.
My point is that the NHS isn't a single entity in England as these decisions are made at CCG (clinical commissioning group level). So a national body can recommend an approach but the local entities may take a while to implement such things hence the variance between different areas in the same county sometimes.
Furthermore you will get registered with a GP and they will then assign your treatment depending on their perception of your need e.g. I get hospital treatment (consultant led team) because I've had diabetes complications. This gets me access to the tech! So when you register try and see the GP in person to argue that you need to see a consultant rather than just the practice nurse. Things like frequent hypos as well as prior complications will get you there too. Or you could just be straight forward and argue that you'd like continuity of care to maintain good control and therefore you'd like to see someone who can fund the pump.
At gp level currently you would only be offered insulin pens and a freestyle libre device on prescription.
No idea about the socialist fiefdom of Nicola Sturgeon!
 
NicoleC1971 said:
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Furthermore you will get registered with a GP and they will then assign your treatment depending on their perception of your need
Click to expand...

When you say the GP will “assign your treatment depending on their perception” what exactly does that mean? Say you’re already well-controlled on a certain regimen of MDI with certain types of insulin and a certain diet. Can they reassess that and force you somehow to make a change they think you should make? Or is the patient the decision-maker in a case like that?

In the U.S. you generally don’t have to worry about doctors making arbitrary decisions that you don’t agree with. You simply find another doctor who is more reasonable or shares your point of view. But I get the feeling that the NHS gives the GP or the consultant or whoever you’re dealing with way more power over treatment options than over here.
 
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To clarify, I meant the GP might decide whether you need to see a specialist not that they will force you into anything. They are gatekeepers to the next level services.
As far as I know they would take into account your bg control (hba1c) and frequency of hypos needing assistance from others plus known diabetic complications. They can prescribe your insulins, needles, pens, test strips, ketostix and/or Frestyle LIbre sensors (if they have got the memo about all type 1s being entitled to the latter!).
For example my friend who's had type 1 for 40 years has a good hba1c, no hypos and no complications so she is seen by a diabetic nurse in the surgery. I've had eye surgery for retinopathy so I get to go to see the consultant at the local hospital and get access to pump services which I needed a consultant to sign off on.
Some GPs have an interest in Diabetes but still fewer know much about type 1 and you will always know more about your type 1 which I am sure is the same as it is in the US?!
 
I lived in Wales for with diabetes for 21 years and am now living in Scotland for the past 21 years must say the nhs in Scotland is far better , can’t comment on pumps but have been on the Libre system for quite a few years now had no hoops to jump through to get it , I am a below knee amputee nd I know for a fact the prosthetic I have I would have never got if I was in wales I have nothing but good to say about treatment in Scotland
 

That's interesting. I thought all UK T1s could see a hospital consultant if they wanted to. They certainly did in my day, but I left in 1999 and was already a long term T1. I've never had a GP (in UK, Australia or NZ) who's been interested in my diabetes: they all reckoned I know more than they do.
 

Yes indeed, that’s probably also the story worldwide. Although, I will say it’s always nice when a doctor can add their in-depth endocrinological or other medical knowledge to your personal experience with Type 1. I have that with my endocrinologist/Primary Care doctor but that was not the case for me in hospital a few years ago (I started a thread on Type I hospital care).

My underlying concern about the doctor/nurse/consultant/patient relationship in the UK or anywhere else is, to put it bluntly, who’s got the power? If a GP sends you to a specialist who wants to do things you believe are not good for you, what options do you have? From what I’ve read, doctors and other healthcare people in the UK (including some bureaucrats) have great leverage over diabetics. For one thing, they can easily have your driver’s license revoked or suspended if they don’t feel, in their judgment, that you’re following their instructions adequately. At the very least, they can make life difficult for you. And the set rules don’t leave much room for maneuver either.

The whole issue of moving patient care from doctors to lesser-trained people like nurses and nurse practitioners also should be a concern, I’d say. It’s happening more and more in the U.S., particularly with lower-premium insurance plans. Doctors here generally hate it and they seem to be right about it compromising care. Diabetics in particular can’t afford to hand over responsibility for their care to anyone who isn’t up to it.
 

Way to go, Scotland! Something to be said for Scottish independence it seems, at least as far as diabetes care.
 
I believe that the GP gets some financial reward for having you on their books but I am deemed to complicated. My newly diagnosed t1 friends seem to get to see a specialist initially at least.
One thing I was able to do was to ask to go and see a different consultant from the one I was assigned to though it was out of area so that hospital had to accept my request (via my GP).
Other than getting access to a pump though I can't say I am finding my very infrequent Zoom calls with the 'specialist' of any benefit tbh!
 
I've always felt that the consultant care isn't that great beyond their power to allow me a pump/sensor!
A specialist nurse can be great re the practicalities of living with type 1 but in my area they just don't have a full team and many of those community nurses are dealing with the needs of type 2 people as well.
For example when I see my specialist he or she (and they never know me given the infrequency of visits nor have seen my sensor data) merely checks my hba1c, checks my insulin doses (self reported) , weight and lipid panel thus prompting a statin discussion. I find it stressful and unhelpful because they are dogmatic about statins (they get marked down if they don't get all of us onto statins).
What specialist knowledge have you encountered that was useful to you? Genuine question!
 
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