# A Type 1 diabetic first, a Doctor second.



## DrVoles (Mar 28, 2012)

Hello All.

I'm brand new here. Looks like a nice friendly and helpful forum.

A little bit about myself. I am a type one diabetic. I have had this condition for 24 years.
I have never allowed it to prevent me from doing anything.
I do my best to look after myself. However, like most of us, I would say I have good days and bad days.

I am also a hospital Dr. I work for the NHS and am specialising in Anaesthetics. (i.e. not a consultant yet)

I like to think that these two facets allow me a fairly unique insight into both sides of diabetic care. I have been part of the professional side of care, and still am. I have also had many years as a patient.

I am keen for peoples opinions on the quality of care they receive. I have received both brilliant, and exceptinonally poor care at different points in my life.
I am debating......although not yet committed to the idea.......of seeing if there is something I/we can do to improve the quality of care delivered in the U.K.

Does anybody have any ideas or know anyone it might be worth my getting in contact with?

Hope you are all doing well.

Dr Voles


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## Northerner (Mar 28, 2012)

Hi Doctor Voles, welcome to the forum  I think if you browse many of the threads here you will find that the quality of care can vary considerably, even sometimes depending on which GP or consultant you see in the same practice or clinic  The main areas of concern appear to be:

1) Teenagers transitioning to adult care

2) Lack of support for people diagnosed with Type 2, often centred on a refusal to prescribe test strips and provide education so that motivated people can learn to manage their diabetes well

3) Many long-term diagnosed people being 'forgotten' by the system and not kept up to date with the latest treatments and research which might benefit them.

Much of media focus is on preventing diabetes and almost all the messages being put across are that it is avoidable and a result purely of being fat and lazy, leading to guilt, depression and often a belief that a swift decline towards complications is inevitable for those who are diagnosed.

The NHS needs to see that education and the right sort of care, whilst introducing short term costs, can result in huge savings down the line, and much improved quality of life for people with diabetes. The message needs to be positive and HCPs could play an invaluable role in motivating people to learn how to control their diabetes well.

Just my thoughts, I'm sure you will hear more from others! 

What sort of insulin regime are you on?


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## DrVoles (Mar 28, 2012)

Excellent.

Many thanks for your reply.

I can certainly agree with you on all three areas mentioned.

Are type 2s still having difficulty with the number of strips being issued? I thought something was supposed to be being done about that.

I have personal experience of being lost in the system far too many times. (as my job takes me from one hospital to another almost annually)
Most recently I was informed that I was unable to have a hospital diabetes appt because they were fully booked for the next 3 months.
I have regular review for my eyes, and was assigned to simple screening, instead of an appropriate appointment. 
Most recently of all, I have been informed that I can no longer receive prescriptions for my current glucometer. I have been informed that I MUST use the only one the PCT allows. The meter (Trueresult) is cheap, nasty, lacking in functionality, and despite claiming to be the worlds smallest meter, is actually ridiculously bulky, due to the test strip container and lancet device.
I have also not yet had a diabetic review at my new gp (signed on over 2 months ago) Nor have i had a blood pressure check.

I have at least been given a blood form. Well done them. 

Sorry about the above. If i'm honest it was one reason for signing on to this site. I feel that I may be in a good position to do something....even if its just a rep or something for diabetes uk, to try to encourage better care in the UK.
Perhaps it would simply be like hitting my head against a wall. But if I don't try, i'll never know. lol.

Luckily I had a good transition to adult care from adolescent care. In fact, the care i received until the age of 18 was exceptionally good. Truly good.
However I can appreciate this can be a big problem for people too. 
I'm looking forward to hearing peoples opinions.

hmmm bit of a long post here, apologies.
I'm on Novorapid and Lantus. HbA1C isn't great at present if i'm honest. A bit embarassed to publish the number here. Its not for want of trying.
Haven't quite ventured onto a pump yet.....very tempted but a little scared of the learning curve..... nor have i really been offerered one other than mentioned to me as a musing once.... 

Just for future reference, i'm rather good at rambling my answers across. Will try to keep them succinct. lol


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## Robster65 (Mar 28, 2012)

Hi DrVoles. Welcome. 

A brave step, joining our merry band when you could well be inundated with suggestions ! 

Hope to talk more later but duty calls.

Rob


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## Pumper_Sue (Mar 28, 2012)

Hi Doc,
one of our other members Abi, is a GP 

My views on diabetes care, well in my own experience all 47 years of it... resoundingly cr*p in most quarters safest option is to look after no 1 as no one else will.
One thing that really needs looking into is the care! provided once in hospital for any reason.
The fear that radiates from people at the thought of going into hospital is  Some of the care leaves a lot to be desired as well.

Simple things like a care plan before admission would be helpful and staff to stick to it as well. Plus correct storage place on or in lockers for access to patients own insulin and testing kits.


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## slipper (Mar 28, 2012)

Hi DrVoles, welcome to the forum. Always wondered if doctors mind being addressed as Doc. I expect its a personal thing.

I have had superb support from Podiatry, Eye peeps and my GP for non specialist care, but he  relies on the practice nurse for day to day support, and therein lies my problem, its non existent if I ask any questions about diet, BG readings etc., just get stock answers. 

Very  restricted strips for self management is also disgraceful.


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## Austin Mini (Mar 28, 2012)

Hi Doc, I have been type 1 for twenty-five years now. I have nothing to complain about whatsoever. The NHS care I received at Boscombe hospital in 1988 on onset was terrific. The care I now receive in Lincolnshire from my GPs practice is also first class. I think it may help diabetics if they had easier access to a dietitian. I do find my GP has not a lot of experience with diabetics. My diabetic nurse is the real expert.


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## Abi (Mar 28, 2012)

Hi Dr Voles
I'm a GP and on a pump
25 year diaversary last September

My care has been good  generally
Concerns I have generally are  test strip rationing or moving over to cheaper strips ( in itself ok  but as long as they are accurate
Lack of acceptance by health care professionals that patient generally knows their own body and obstructive behaviour when it comes to self care- both as an inpatient and in the community
Judgement when HbAc isn't perfect- or  laissez faire attitude to poor control- the right balance of encouragement and understanding when diabetes doesn't go to plan or life gets in the way
Access to secondary care- people not being referred to hospital clinics when GPs don't necessarily have the expertise- happening in some areas- also disruption to care when patient moves- as you have stated
Insisting that one regime suits all e.g lantus is the wonder drug , always lasts 24 hours, never needs to be given in a split dose, ditto levemir, or that levemir is an inferior product as it is more likely to need to be split
Recent article in BMJ stating little evidence to analog insulin( I know older products work fine for some people but concern that peoplewill be swapped over wholesale
Not taking other factors as well as HbA1c into account e.g. flexibilty and ability to integrate diabetes into one's daily life
General fears re NHS changes, limited resources and what it will mean  for us

Not medical but societal
Heavy handed approach of DVLA - I know the problem need policing and some people should't be driving due to hypos but stopping someone from driving for a whole year because they have a couple of severe  hypos rather than reassessing contorl in a couple of months is draconian

People thinking if you take your insulin and avoid sugar you will be fine- bullying behavious re peers, colleagues, bosses etc who think they have a right to police your food, whether and when/were you can inject and test or give you a hard time because you have to take a few milliseconds to treat a hypo or want something to eat with a few less carbs etc etc
DUK still advising ridiculously high carb intake which is detrimental to some people;s control

Also- why people witjh busy working lives can't get the right encouragement to get good control and do well professionally

Most of the above have not happened to me but they are problems I encounter from patients/ fora etc


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## DrVoles (Mar 28, 2012)

Thanks for the replies guys

Feeling very welcomed. 

Yes, I can certainly understand the concerns of being admitted to hospital. I think the majority of us are experts at our own condition and this is certainly something that may be overlooked by the staff on wards. A care plan would definitely be helpful. There are fairly strict guidelines in hospitals to how these admissions should be managed. I am not sure how strictly these are adhered to on the ward, since I am mostly theatre based.

I'm looking forward to all the input I can have..... I've developed a bit of a bee in my bonnet. I'm tempted to start talking with Diabetes UK to see if there is anything I can do with/through them....


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## DrVoles (Mar 28, 2012)

ooh blimey.
lots of posts... hang on


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## Mark T (Mar 28, 2012)

DrVoles said:


> ooh blimey.
> lots of posts... hang on


Yep, but don't feel you have to acknowledge every one of them, some of us are just say hello, like this 

Welcome to the forum DrVoles


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## DrVoles (Mar 28, 2012)

Haha, i don't mind what you want to call me, i'm not sensitive about being called Doc, or Doctor, Or Voles, or whatever. I'm sure i'll even start using my real name on here at some point. But until then, i'll respond to most things.

I'm pleased to hear good experiences from people too. I think it's possibly very variable nationally. I also think care for Diabetics is extremely complex. There is probably no one size fits all framework. It is possibly why I/some of us have had such variable experiences. I think limitation of resources also must come into play. Not just money, but more in availability of appropriately trained staff and so forth.

Nice to hear from you Abi - on the coal face as it were. I imagine its given you some great insight into commonly faced difficulties etc.

Thank you all so much for being so welcoming.


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## Catwoman76 (Mar 28, 2012)

DrVoles said:


> Hello All.
> 
> I'm brand new here. Looks like a nice friendly and helpful forum.
> 
> ...



Welcome DrVoles, you have beaten me by a year, type 1 for 23 years, ups and (many)downs, had my beloved daughter in my 40's, 11 years ago and still going strong  Sheena


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## HOBIE (Mar 28, 2012)

Hi doc voles !  My Gp is a T1 aswell.  I think NHS is very good in our area with some nice people !! Welcome


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## daisymoo84 (Mar 28, 2012)

Hi Dr Voles! Welcome to the forum.

I'm still fairly new to this diabetes-lark but so far the support I've had from my doctors has been excellent. It's been 6 months since dx and I've had 2 hbA1c tests, been given a monitor and perscribed strips, been on a DESMOND course and have my first eye test on Friday.


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## trophywench (Mar 28, 2012)

Gosh, not many diabetics in your area then Doc?  Or too many staff at the Diabetes Clinic? - 6 months round here !!!

Apparently, according to my GP, I like everyone else in Coventry who gets strips, am only supposed to have 100 strips a month according to the law as per the PCT.

Do I hell - our repeat scrip authorities are issued with a max of 6 repeats for each item (unless it's something where they want to see you more often obviously) so I just keep on ordering when I get down to 1 box and whoever signs the scrip just renews for another 6 months.  Will be interesting to see if that changes when the current load of NHS bollards takes place round these parts.  Oh, he reluctantly increased it to 3 boxes at a time.

However I rang today to order Levothyroxine and Losartan tablets, the last scrip was the 6th and they didn't tell me, and today's is the last Losartan I can have too, without seeing a doctor.  No appts tomorrow, I'm in London all day Friday, I go on hols on Monday morning for nearly a fortnight .....

Yes I will run out whilst I'm away,  Obviously they don't care, do they! - so why should I.  Well I do care actually.  But they didn't tell me I needed to notice this, because they've always just renewed it again before automatically, I assumed they would again.  First time it's happened in 12 years with the practice.


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## Phil65 (Mar 29, 2012)

Welcome Dr Voles, I have been Type 1 for 16 years, MDI for 15 and pumping for a year (pumping is definitely the way ahead). Until I attended a carb-counting (type) course (a pre-requisite before consideration for a pump)I had not really come into contact with any other Type 1s, I was totally shocked at the lack of knowledge of the other 6 Type 1s on the course. None of them knew much about carb counting, one guy said I take 10,10 and 10 (units) regardless of what he ate (Type 1 for 36 years!) others didn't have a treat for fear of going high (thought they couldn't/shouldn't bolus in between meals) One guy had never had a pudding since dx 30 years previously!.....Truly eye-opening! For me carb counting is essential, I too wasn't told about it for years and a lot of my knowledge of diabetes is down to finding the information myself through reading/internet. I have to say that my diabetes team (hospital) are superb, my gp is ok but his diabetes knowledge is basic to say the least and I wouldn't go near the practice nurse (supposedly a diabetes nurse...but not diabetes trained!).


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## everydayupsanddowns (Mar 29, 2012)

Hi DrVoles

Welcome to the forum. Look forward to reading your posts on anything and everything over the coming months. 

Funnily enough I was approached recently by QiC (Quality in Care) and asked to write a few bits and pieces to give a 'patient's-eye-view' of cointact with HCPs when living with a long-term condition. QiC is trying to reward/acknowledge excellence in care and highlight really good, effective, forward-thinking initiatives and technologies being used to help people manage long term illness in the hope that these can then become more widespread. Don't know if you've heard of it, but it seems like it might be something trying to make similar positive changes to healthcare?

More info on our blog here: http://www.everydayupsanddowns.co.uk/search/label/QiC Awards


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## Twitchy (Mar 29, 2012)

Hello DrVoles, and welcome! 

I've been a type 1 since under 1 yr old, now in my thirties...spent nearly 2 decades on 2 jabs a day, then mdi for around another decade, now - YAY!! - on a pump & I can whole heartedly recommend them - takes a little getting used to but I'm sure you'd be fine in no time.

Very, very mixed bag care wise - fab endocrinologist now, had a wonderful diabetic specialist obstetrician & have come across some good DSNs, but care at GP surgery's etc has been far more patchy, mainly due to not seeing so many T1s I suspect.  Definite reluctance from some docs to allow for the possibility that patients are not idiots & allowing effective self management now might reduce likelihood of complications later.  Personally I think a massive issue is the media portrayal of diabetes as a 'getting what you deserve' condition - untrue, unfair & unhelpful.  I have been through the experience of needing loads of lasering & ultimately a vitrectomy for diabetic retinopathy worsened by pregnancies & the side effects from lasering...at one hospital it seemed like every time I was seen I got the judgemental & dismissive comment "Uh. Retinopathy? You MUST be badly controlled then."  Actually, my HbA1cs have been rather good for a long time, thank-you very much...

My thinking is that the major problems are lack of education for diabetics (ie like DAFNE, showing people the cause & effects of medication, exercise, food etc etc)...and not giving people (whatever 'type' of diabetic) the tools they need to live safe, full, well controlled lives, be that an insulin pump, test strips, access to dieticians, etc etc.

Anyway, enough ranting!  I understand that DUK now have some new ways of getting involved challenging policy, representing diabetics etc - might be worth a look on their website?  Diabetic voices is one of them I think?...

All the best!


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## Abi (Mar 29, 2012)

Again I will highlight the assumption that "one size fits all"-
On my DAFNE course which was 5 years ago there were some people with whom it clicked straight away- their knowledge had been quite basic. I had been carb counting before but my levels were still more labile than their's despite accurately counting and adjusting to the 9th degree and one patient actually p***d me off royally when she made a comment about my levels being 4 before bed and 13 on wakening- which was not unusual due to the vagueries of absorption of long acting insulin- could rarely get it right.


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## trophywench (Mar 29, 2012)

Abi - probably comes from the years of indoctrination that many of us got from the NHS, ie if it doesn't work like it says here is this book - then the only thing it can be is User Error.

For 'User' substitute own name .......


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## DrVoles (Mar 29, 2012)

Wow,

I feel very welcomed. Lovely to hear from all of you.

Interesting to hear everyones experiences.

I will definitely be looking into that part of Diabetes UK and checking out the ups and downs blog too.

How is your vision now Twitchy? My left eye has required some extensive laser treatment too (plus some avastin injections) - unfortunately a risk of the length of time with the condition i guess. My right eye however is not too bad. Just wondering what I may have to look forward to....

Carb counting is an interesting one.... there seem to be large numbers of diabetics who are very interested in their condition and take charge of it. But equally surprising are the numbers who haven't got to grips with carb counting etc. I was brought up on "exchanges" of carbohydrate, which isn't vastly different, just different terminology i guess.
I would love to get onto a DAPHNE course, but never made/found the time to do it. 
I am just starting the BDEC course (found from the links on this website) to see if i find it useful or not.

Lovely to hear from you all


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## Abi (Mar 29, 2012)

you will find the bdec course helpful I am sure if you are n't confident re carb ratios etc
If you find you still aren't where you want to be control wise then the book " using insulin" by John Walsh goes into even finer detail- It''s American but gives  blood gluose levels in mmol/L as well


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## Twitchy (Mar 29, 2012)

Hello again  My vision now nearly 2 months post op feels blooming brilliant!  I suspect that my night & peripheral vision are not what they were but am still fine to drive & was told the lasering was quite peripheral so actually the effects should be relatively minimal.  Having had 2 + years prior to the op of very frequent bleeds (lots of black blobs, sworls, 'oil mist' /vaseline smear effects that moved in the vision, I am really enjoying having drastically clearer vision now! The problem for me was scarring from the lasering had snagged a blood vessel & was  tearing it, so although the lasering had sorted out the retinopathy the bleeds continued. The eye clinic & eye casualty at my original hospital were always crazily busy & felt quite rushed & noone spotted the real problem ( they just assumed bleeding = active retinopathy so more laser!!!). Eventually i paid for a 2nd opinion at a different hospital where they found the problem & have now fixed it (hurrah!!!!) So things are good now - but the care at the two hospitals is poles apart! I've learnt a valuable lesson about doing your own research & not just accepting what you're told! I hope your experience with the eyes is a good one.


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## SimplesL (Mar 30, 2012)

Hi

Welcome to the forum. Personally the care I've had has been pretty good.

2 down points though:

I had to find out & book myself onto the local run education workshop which I found out by a google search. Would have helped if GP practise had mentioned they existed when I was diagnosed.

The other is the plain refusal (I was told not needed in second sentence after being told I was a type 2) to prescribe testing strips if you are not on insulin. 12 months later I bought my own & found out that although my HBA1c good at 6.5 I am very high first thing in the morning.

At the moment I'm taking part in a small aspirin study & once completed I'll be catching up with parctise nurse at GP clinic to discuss and work out a plan to improve early morning readings.

BUT IF I HADN'T BOUGHT MY OWN STRIPS I WOULDN'T HAVE KNOWN I HAVE THIS ISSUE. 

NHS want us to self-manage but put pressure on GP's not to prescribe strips. What are we supposed to do except where you can buy your own & keep a check yourself.

Probably not connected but since my old dad had his strips taken off prescription his control got worse & he is now on dialysis 3 days a week for end stage kidney failure. May have happened anyway but his health did get worse after he no longer had strips to use was a bit coincidental.


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## Dizzydi (Mar 31, 2012)

Just saying hello and welcome dr voles. 

Was interesting to read this whole thread. 

I have great care from gp and consultant. Have had right from the start of diagnosis


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## DrVoles (Apr 3, 2012)

Twitchy said:


> Hello again  My vision now nearly 2 months post op feels blooming brilliant!  I suspect that my night & peripheral vision are not what they were but am still fine to drive & was told the lasering was quite peripheral so actually the effects should be relatively minimal.  Having had 2 + years prior to the op of very frequent bleeds (lots of black blobs, sworls, 'oil mist' /vaseline smear effects that moved in the vision, I am really enjoying having drastically clearer vision now! The problem for me was scarring from the lasering had snagged a blood vessel & was  tearing it, so although the lasering had sorted out the retinopathy the bleeds continued. The eye clinic & eye casualty at my original hospital were always crazily busy & felt quite rushed & noone spotted the real problem ( they just assumed bleeding = active retinopathy so more laser!!!). Eventually i paid for a 2nd opinion at a different hospital where they found the problem & have now fixed it (hurrah!!!!) So things are good now - but the care at the two hospitals is poles apart! I've learnt a valuable lesson about doing your own research & not just accepting what you're told! I hope your experience with the eyes is a good one.



Well it sounds like you were taken down the long route to getting the treatment you seemed to need.
I'm glad things are much better for you now 

I had my diabetic clinic (hospital) appt today....at my a new clinic. I'm very impressed. Very thorough, well organised, friendly, clear and so forth. Furthermore i've been given the date of my next appointment already (a problem i've had in the past waiting fro appointments in the post that never came.)

Thanks Abi, i'll check out that book too. Its not that i don't know what to do, and so forth, its just a matter of being able to get my dosing right, and it just seems to have become more difficult lately.

Cheers guys


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## NatB (Apr 7, 2012)

Hi there dr, 
                  Really good to read all the threads on here. I started with diabetes when I was 30 and was brought on during pregnancy. The help and advice that has been given since has been brilliant and second to none especially at the hospital and the diabetic nurses are extremely helpful. 
After the birth of my son the diabetes went for six weeks then came back and my results came back at 28.1. I went back on insulin five times a day but struggled with highs and lows most of the time. 
Enrolled on dafne and then went on an insulin pump in 2010. Hb1ac was 10.1. Now down to 7.9. Do suffer with colds and regular bugs as work in a day nursery but find the pump so much better. Won't deny it still have good and bad days but wouldn't go back. 
I do however have problems with getting testing strips.  When I am doing lots of fasting periods and exercise I use quite a lot of them and when I try to get more the receptionist are reluctant to get them for me. I am using the optium Xceed.
Great to have a dr on here! 
Natb


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## AndyS (Apr 13, 2012)

Hi Dr Voles

Welcome to the forum 

I'm in West Yorkshire and the level of care is quite good.

The only problem I have come across relating to Diabetes \ metformin is I saw 5 GP's and 2 Dentist's with problems I was experiencing with sore mouth\gums.

It took 2 years and lots of tears, tantrums before B12 deficiency was diagnosed.  Apparently it's can be caused by Metformin, something about 'intrinsic factor'?  I have a B12 injection every 3 months, it lasts about 4 weeks then the symptoms come back.  My brother is with a different GP and has his once a month.  My Doctor says I shouldn't need it more than every 3 months.

That sounds more like a moan than a welcome, I don't mean to.

Best regards

Andy


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