Health Teams

IainB

IainB

Member
Relationship to Diabetes
Type 1
Hi All,
I have lived here in Greater Manchester for the last 13 years and during that time I never seen a consultant and only seen the diabetic specialist nurses on 3 occasions.
They have just started taking an interest in me though ( not sure why now as I have been a type 1 for 64 years) I have had a free style libre 2 for 2 months and I’m upgrading that to a Dexcom 1+ next week.
My question is, is this normal for all diabetics?
I ask because I was chatting to someone who lives near St Helens and whose wife is type 1 and she has regular appointments with medical and nursing specialists, has had CGM and a pump for ages.
Is our care just a post code lottery despite NICE recommendations?
Thanks
Iain
 
IainB said:
My question is, is this normal for all diabetics?
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Varies. Where I am it's usual for adults in reasonable control to be treated by GP, though always with the possibility of referral to the hospital team if we want. In other places it's usual for all people with Type 1 to be seen regularly by the hospital team. (Even when I saw the hospital team I saw DSNs rather than consultants.)
 
IainB said:
I ask because I was chatting to someone who lives near St Helens and whose wife is type 1 and she has regular appointments with medical and nursing specialists, has had CGM and a pump for ages.
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If it’s something you want you have to ask generally. So if you wanted a CGM earlier it would have been available to you earlier than 2 months ago if you’d asked, same if you want a referral to the hospital to see a consultant and to ask about pumps, you’d have to ask if you wanted that.
 
In my experience yes it is a postcode lottery, and I also think we do need to fight for our care in some places. It’s not fair.

At our old house under Warrington my care was awful. Hospital team not much use, long waiting lists and treated me like I was at fault rather than as a patient. You could self refer and be seen for a course of appointments, about 3 across 18 months. I couldn’t get on the libre despite meeting the NICE criteria. GP annual appointments only. No care at all. Just the basic yearly box ticking. So for years I had this self referral, and then poor care when I asked for it. For example I was on a basically no longer her background insulin that wasn’t effective but I no idea as nobody had ever thought about it, and I was on 8mm needles again for years because nobody had ever thought I should be on smaller ones. Most of what I learnt about diabetes before I moved was self taught, on here and books etc, no actual medical knowledge from the NHS.

As soon as we moved under Tameside I had the libre within a few weeks, I didn’t even ask, my new GP surgery provided it first appointment with them, they asked me and that was it I was on it, I was with just the surgery for a while but with the libre I kept noticing things and they couldn’t really help me with it, their diabetes nurse did her best and they did try and help me. Anyway I asked if I could be referred to the hospital consultant team and they have been great. I have had the best care in my whole diabetic life. I have a DSN team I can contact as needed, regular appointments with them and twice a year appointments with the consultant. There’s also a diabetic dietitian who is very helpful and again you can be referred too.
I’m not sure which bit of Manchester you fall into, and I did have to ask to be under them but as soon I did I now get proactive care, they helped with my sterilisation referral and i asked if I could have a pump and now I go, and the training and support with that has been great.

If you fall under Tameside I know the care I have had is great. I have also realised that you can just ask what support there is and I recommend doing that.
I know other side of the border (peoole in the same town) can be with one of the Cheshire NHS Trusts or derby but I have only heard good about the Cheshire one (not Warrington but I can’t remember which).
Not sure what area you are under but I have heard good things from others local to me including Manchester.
 
PhoebeC said:
In my experience yes it is a postcode lottery, and I also think we do need to fight for our care in some places. It’s not fair.

At our old house under Warrington my care was awful. Hospital team not much use, long waiting lists and treated me like I was at fault rather than as a patient. You could self refer and be seen for a course of appointments, about 3 across 18 months. I couldn’t get on the libre despite meeting the NICE criteria. GP annual appointments only. No care at all. Just the basic yearly box ticking. So for years I had this self referral, and then poor care when I asked for it. For example I was on a basically no longer her background insulin that wasn’t effective but I no idea as nobody had ever thought about it, and I was on 8mm needles again for years because nobody had ever thought I should be on smaller ones. Most of what I learnt about diabetes before I moved was self taught, on here and books etc, no actual medical knowledge from the NHS.

As soon as we moved under Tameside I had the libre within a few weeks, I didn’t even ask, my new GP surgery provided it first appointment with them, they asked me and that was it I was on it, I was with just the surgery for a while but with the libre I kept noticing things and they couldn’t really help me with it, their diabetes nurse did her best and they did try and help me. Anyway I asked if I could be referred to the hospital consultant team and they have been great. I have had the best care in my whole diabetic life. I have a DSN team I can contact as needed, regular appointments with them and twice a year appointments with the consultant. There’s also a diabetic dietitian who is very helpful and again you can be referred too.
I’m not sure which bit of Manchester you fall into, and I did have to ask to be under them but as soon I did I now get proactive care, they helped with my sterilisation referral and i asked if I could have a pump and now I go, and the training and support with that has been great.

If you fall under Tameside I know the care I have had is great. I have also realised that you can just ask what support there is and I recommend doing that.
I know other side of the border (peoole in the same town) can be with one of the Cheshire NHS Trusts or derby but I have only heard good about the Cheshire one (not Warrington but I can’t remember which).
Not sure what area you are under but I have heard good things from others local to me including Manchester.
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I come under Wigan. I was under my GP for quite a few years but they seemed to be not that interested in diabetes, they don’t have a specialist diabetic nurse like some and said they were unable to issue any CGM and that had to be done by the hospital team.
At my last visit to the diabetic nurse at the hospital I asked about a consultant referral but to my surprise (I am a retired nurse manager) they said they were not able to and all referrals had to be doctor to doctor so had to come from my GP
 
IainB said:
I come under Wigan. I was under my GP for quite a few years but they seemed to be not that interested in diabetes, they don’t have a specialist diabetic nurse like some and said they were unable to issue any CGM and that had to be done by the hospital team.
At my last visit to the diabetic nurse at the hospital I asked about a consultant referral but to my surprise (I am a retired nurse manager) they said they were not able to and all referrals had to be doctor to doctor so had to come from my GP
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I would mention to your GP next time you speak with them, or even make this a reason to speak to them.

Nothing wrong with asking for more help, and when I have done it recently it has worked.

I don't think there is a normal. I think our care is improving overall, there's some great reports and data a that show the type 1 population is healthier than we have ever been, we are living longer, with less complications, and the tech helps and so does the research but most of us do find we have to fight for things and it is worth doing. Good luck getting the support you should have!
 
I have yearly meeting with the consultant but am pretty independant. My gp doesn't really have any input into my diabtes other than stopping all my insulins etc on a yearly basis for review, but i tend to have a bit in stock...i have a box of lancets so that should keep me going aboy 10 years!
 
I second/third/forth the theory that it is a postcode lottery.
My diabetes care is under the diabetes clinic at the local hospital.
I have had a pump for 8 years and Libre since Libre 1 was available.

My "annual" appointments are with the endocrinologist, DSN and dietician (who never says anything) every 14 to 15 months.
I also have an annual review with the DSN at my local GP surgery but based on the questions she has asked me, she knows a lot more about type 2 and can barely spell "Type 1" (after 20 years with the condition, she asked if I had ever had a hypo). But I get blood tests done for it and I find it useful to get an HBA1c check every 6 months and cholesterol, liver, kidneys, etc. checked annually.
 
helli said:
I also have an annual review with the DSN at my local GP surgery but based on the questions she has asked me, she knows a lot more about type 2 and can barely spell "Type 1" (after 20 years with the condition, she asked if I had ever had a hypo).
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The GPs I see for my review are a bit better than that! But mostly in that while they'll offer fairly (to us) obvious advice, they'll refer me on if necessary. (And referral is pretty easy: the hospital team has a clinic in the local hospital which is easy to walk to, and one of the DSNs visits the GP surgery once a month.)
 
Yes, you do have to push for what you need in some places more than others and keep pushing until you get what you need.

I have a 10min telephone appointment with the consultant about once a year. I don't have any other appointments with the clinic ie no DSN appointents but I do have at least an annual appointment with the "diabetes nurse" at the GP surgery. She is not a DSN and I would doubt that any GP practices have a DSN, just a practice nurse who has had some "in house" training by a DSN and that DSN from the clinic may visit the practice one day a month to help and support that nurse with more complex cases and ongoing training/mentoring.
My practice diabetes nurse is lovely but she knows that I know more about my diabetes than she does, so much as she is keen to learn she doesn't offer practical advice because I don't need it. She can prescribe though and I eventually managed to get blood ketone strips earlier this year from her, after trying for several years with the consultant, even though he insisted I had a dual BG/ketone meter at my first appointment with him, but then never prescribed the ketone strips for it, despite me asking annually after that.
I also had to push for Libre and self funded for about 6 months before I got it on prescription. That said, I have a very good rapport with my GP practice nurse and consultant but thanks to this forum and Libre I now have everything I need to self manage and apart from getting blood tests done, I don't particularly feel that I need those 2 appointments but they get my prescription items reauthorized, which I understand needs to be done annually.
 
Seen a "locum" consultant once since diagnosis (2+yrs ago) - DSN once a year and annual check with my GP surgery (practice nurse, to do bloods, BP, height, weight, check for lipos, foot check etc.) - that said, my GP is excellent (I asked her to upgrade my Libre 2 sensor to a Libre 2+ one and she did it straight away, and swapped me onto reusable smart pens once there was a shortage of disposables due to the Wegovy etc. explosion) - I'm next in line for HCL but my Hb1AC is 56 so not quite within the parameters - But yes - it is an absolute postcode lottery it would seem
 
My GP refuses to any diabetes related prescription just says I have to take it up with DNS. Yesterday I had a text saying I had a diabetic review at surgery, this was always with practice nurse but I see it has now changed to nursing assistant
It seems to me it is all aimed at money saving, not patients.
 
I get my blood taken and weight and BP with the nursing assistant and I think she may have also done the toe tickle last time, but then when the results come through from the blood tests, I get a review with the diabetes trained practice nurse sometimes referred to as the Diabetes Nurse or DN who can prescribe and refer me to other services like podiatry or dietician and put me forward for courses like DAFNE or refer me to the clinic if I wasn't already on their books. She does encourage me to contact them (the clinic) if there is anything that I think I can't manage myself. She knows I am very confident of managing my own diabetes but she has a pretty good understanding of managing diabetes with insulin herself and how Libre works and interpreting it and in my opinion she would be a valuable support if I wasn't so clued up by this forum myself. I am sure this is pretty rare at GP practice, but the previous diabetes nurse was quite well informed too and I wonder if this is a situation which is fostered and encouraged by the consultant at the hospital to help ease the clinic workload. I suspect that my consultant does encourage the practice nurses to contact the clinic for advice if they have unusual cases present to them at diagnosis, as this is how my Type 1 was picked up relatively quickly after an initial Type 2 diagnosis.
 
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