The questions you didn’t like to ask (or pumps tubes and all that)


‘This is my insulin pump’ I say, whipping it out of my cleavage when people see it neatly tucked in my bra front (perhaps I wear tops that are too low??).   I try to explain what it does but often I see some unasked questions lurking as curiosity behind peoples eyes, such as ‘Where does that tube actually go?’ and ‘Is there a needle inside you?’ or ‘Does that go into your blood stream?’.  Sometimes I explain but much of the time, to be honest, I can’t be bothered.

I’ve had an insulin pump now for 3 years (or there about).  So my blog this week is about the mechanics of pump use and an attempt to answer some of those questions I can see people want to ask but probably think its too rude to!

I, of course, use a particular brand of pump and ‘giving set’ (that’s the tubing and bit that goes into me) but I think most pumps are similar, at least in principle.

I will also share with you the mechanics of my continuous glucose monitor – just in case you didn’t like to ask.  I intend to blog properly about this later when the results are in as I’m still mid way through that experience.

So insulin pumps are essentially little pumps that push a regulated amount of insulin through a tube and into subcutaneous tissue.  Subcutaneous means beneath the skin and refers to the connective tissues and adipose tissues that are between the outer layer of skin and above the muscles

They are similar to other types of syringe drivers found in hospitals but are much smaller as they are attached to the person 24 hours everyday and insulin is administered in very small quantities

My pump has a reservoir of insulin of 3 mls, which clips into the pump.

This then has a tube connected to it like this:

The end of the tube has a tiny plastic tube that is inserted into the subcutaneous tissue.  It is introduced with a special inserter device and a needle which is shown here:

Inserter device

The needle is withdrawn once the tubing is in place.

The inserter needle removed from the inserter!

Et Voila!

The tubing is around 60 cm long and allows the pump to lie next to me in bed at night.  How I coped with the pump in bed was one of my biggest worries before I got the pump but I soon settled into moving it around with me in bed; I rarely get tangled up.

You can remove the pump and tubing to shower and bathe (and other times as necessary 😉 ).  You leave the little cap, with the plastic tube attached and reattach the tubing and pump once you are done.

This is one I have had in place for around 3 days and removed.  You have to change the giving set every 3 days.

Removed cannula (sorry its a bit fuzzy – iPhone :))

There are many different types of cannula and tube – this just happens to be the one I use.  A cannula is a hollow tube with a sharp, retractable inner core that can be inserted into a vein, an artery, or another body cavity, or in this case subcutaneous tissue.

Sometimes the little bit of tubing gets kinked and this can interrupt the delivery of the insulin and you might see me bemoaning a kinked cannula on Twitter as its a real pain when this happens, although for me its been a rare event.

A continuous glucose monitor, sometimes called a CGM, in my case refers to a small electric sensor that is inserted into subcutaneous tissue.  Here is the last one I removed – its slightly bent but still worked fine, although bending is not a ‘good’ thing!

It is attached to a small transmitter – here is a picture of the transmitter attached to me. 

The CGM in place – coovered in opsite dressing!

The transmitter wirelessly send the measurement of glucose in the interstitial fluid – the fluid in and around your body’s cells – to my pump which then can give a picture of my glucose levels continuously over the day and night.  This is not the same as blood glucose which we measure with our meters but is less invasive than connecting something into the venous system.  The readings are calibrated with blood sugar readings taken by a usual finger prick measurement.

Here is a picture of the measurement showing on my pump.

I hope that explanation and the picture answered some questions 🙂

There are different types of pumps and CGMs and the products are improving all the time – it will be interesting to see the development of patch pumps or pods, which seem to be the emerging next generation.  Everyone with Type 1 diabetes is likely to be watching these developments with some degree of interest. 

I am still very grateful for my pump.  It transformed my life and made me feel so much more ‘well’, its hard to explain.  For my treatment and care, including my pump, I remain eternally gratefully to the NHS and the people who work in it.

To whom it may concern (or A Year of Care)


To whom it may concern

Dear sir/madam

I’ve been thinking about writing to you for a while but not really had the confidence. You see I am really grateful; I do understand that my staying well (indeed alive) really depends on the NHS but I just thought it might be time to share with you my thoughts about how we could meet both our needs; meeting my wishes for positive living, good health, and independence and for you being more efficient (I know we are all short of cash).

You see I don’t really want to come to hospital or clinic to see you, it wastes my time and yours and let’s face it time is money for both of us. I know I need to come sometimes but more often than not I really don’t need to and surely I could discuss that with you in an email? I can send you some results if you like; they are all programmed in my pump and the internet means I can send you the whole lot. You would just need to log-on. Please don’t say that Information Governance won’t let you. Just send Mr or Mrs IG to me and I’ll be sure to tell them it’s my information and I can send it to whom I like – I’ll even sign something if they need more paperwork.

If you need to check my feet surely I can pop into Boots when I pick up my insulin? I’m sure they could be trained to do it, that way its only one trip. I’m thinking that coming to the hospital just for someone to test my feet with a filament is a bit of overkill. They will need a ‘feet check’ area in Boots though; I refuse to take my tights off near the Clarins counter, what if I hadn’t had my pedicure?

Talking of prescriptions, well that’s a bit of a sore point, but why can’t I just order them online and the pharmacist can monitor my use and give me advice? It’s not like I’ve got a bad track record of compliance, I just don’t seem to get any concessions for good behaviour. Recently you reduced the medicines I get from two months supply to one. That’s 6 more trips a year, and all the paperwork that goes with that. Going to the pharmacist is the one physical thing I have to do, collecting medication, so I need to try to get the best out of the trip, hence the foot check suggestion.

Now blood tests, HbA1c, I’m sure I’ve read somewhere that you can do this by finger-prick test and send the test in the mail. If this is true it would save me a lot of time and you wouldn’t need to have those nice phlebotomists taking blood from my arm. At the moment I have to go to the hospital to have this done as it’s more convenient that waiting weeks for a sample to be taken at the GP. I just sort of thought it might save some money, it would certainly save my petrol and car parking charges (that’s if I can find a space). If these tests are not as accurate and are expensive perhaps it might be worth trying to resolve this – wouldn’t it save money (and petrol) in the long run?

I would also (I’m quaking as I suggest this) would like to have a slightly better balanced relationship with you all. After all (I’m touching wood now) I’ve always tried to be a good person with diabetes and have managed to stay out of hospital for 33 years. The suggestion that I need a ‘care plan’ is sort of helpful but a bit patronising too. I suspect it’s a language thing but sometimes my goal might be ‘more of the same’ or ‘I’m Ok as I am, thank you’ but the word ‘goal’ somehow implies I need to do better…… better than what?

A better HbA1c? Now it’s not all about this. I know that’s how you measure things but you see I just don’t want to go hypo at work, or at night, or pretty much anytime really. So sometimes I feel the pressure is on to keep my blood glucose low. I try, I really do, but it’s not always that easy. Have you ever gone hypo when presenting to 30 nurses – my mouth sort of doesn’t do the right thing, I lose the power of coherent speech – I do try to stop this happening even if it means going a bit higher than I would ideally like. If I’m really tired and have a severe hypo at night I don’t wake up and then fit. It hasn’t happened for years now but I really would like it never to happen again if there is any way to avoid it, so low is not always great.

I accept that I need to see you sometimes but I also think I know what to do and can ask for help remotely when I need it. I also know I might need more help one day; if I do can I not come for fewer appointments now, while I’m well, and save them up for later, when I might need them?

Finally, this is a special request, this Continuous Glucose Monitor I have on loan is marvellous. Could I borrow one maybe one week each year? If it’s too expensive I’m happy to pay a modest contribution, especially if that helps some people who can’t do that themselves. A good understanding of what’s happening is really helping, now this might help with the HbA1c stuff too (I really do understand this is important).

So, I hope you read my letter in the spirit it is intended. I do respect and like you very much but I could do with not seeing quite so much of you, in the nicest possible way. I’m sorry for any inconvenience I may cause.

Yours faithfully

anniecoops

Person with type 1 diabetes for 33 years

This letter is written slightly tongue in cheek and I recognise that I may not want the same as many other people. The point I’m trying to make is that care of people with diabetes is cited as being approximately 10% of the healthcare spend in the UK (Diabetes UK State of the Nation Report 2012 http://www.diabetes.org.uk/Documents/Reports/State-of-the-Nation-2012.pdf) although the report doesn’t separate out Type 1 and Type 2 diabetes. Any efficiencies we can make surely will help? At the moment I have such limited choices – clinic visit or nothing much really. The payment system is also perverse, apparently if my Diabetes Nurse phones me for a consultation they don’t get any payment; which is surely wrong, perhaps it should be less than a standard clinic visit but she is offering a service, a highly efficient one at that.

I remain, however, an optimist. The Year of Care Programme is designed to do what I’m describing but seems to be taking such a long time to come into my life. I first heard of this in around 2004 and the final report was issued last year, 2011. Meanwhile I’m still using expensive unnecessary clinic visits. I do have an issue with some of the language in the report, as I said in my letter, ‘care planning’ or more ‘goals’ for me is a pejorative term but I can live with that if it improves things. I hope the options list, however, is more creative than the list in the report; surely people with diabetes will have their own ideas about what will help them. If it’s still a list of fixed services and people with diabetes can’t influence what they are, we are no further forward. I haven’t been particulalrly creative in the way I describe what I would like – I’m sure that there are more ways to do this!

Nevertheless, I recommend the report to you all. It’s about system change at scale. It will demand new ways of working and new relationships – the sooner we get on with it the better.

The full report can be found here: http://www.diabetes.nhs.uk/year_of_care/year_of_care_resources/

10 reasons to get involved in an online patient community


This week I’m back to being a patient.  I warned you that I have a habit of jumping about a bit!

This week I’ve been thinking about this online patient community I have suddenly become part of and why I think it might have happened.

Firstly I need to go back in time.  In 1979 when I was diagnosed as having diabetes I used to go off to clinic and look around and it seemed full of ‘old people’ (I was 16).  I had nothing in common with anyone, or so I thought.

I remember one day I met a young person!  I must have been about 22.  She genuinely was the first person I had ever met who was a similar age to me who had T1 diabetes.  We met in clinic and made pledges to meet up and set up a group.  But of course we never did.  It was more difficult then.  How did you find people?  Posters? Letters? To whom? Ask the consultant?  I guess I had no idea.  The British Diabetic Association (now Diabetes UK) only communicated by post – that’s all there was.  There was a stall outside the clinic where they sold recipe leaflets that warned you never to eat anything sweet and to eat the blandest food.  I wish I still had some,  I would be interested to see if my memories are right.  The people who sold the recipes were very old in my memory!

So, at the end of all of this I coped on my own.  I have never been one for talking about stuff like my health.  If you read my earlier blog on stoicism you might see why.  So up to 6 months ago I still didn’t communicate with anyone else with diabetes.  They run days for pump users where I have my care but they are always in the working day and somehow I’m always too busy.  Interestingly I’m not sure I am too busy…….. not when I really ask myself and am honest, but whatever the reason I don’t go.

I came into social media because I was intrigued, interested and curious.  I started out as a nurse here, and I am still that.  But suddenly I found these people who were talking about diabetes.  I lurked, listened, watched……  at the end of the day I decided I wanted to be part of it and now feel that I am part of a community. I now participate and communicate with these people everyday!  What a difference from the past.

So what are the 10 reasons that I see to get involved in online patient communities:

1     No one in the community judges my decisions, choices and ‘cock-ups’!

2    There is someone there all the time, even if the UK is closed for business friends across the world in #CANDOC and #NZDOC are often around.

3     They encourage me to do well.  In good ways.  Not in HbA1C ways.  Its not always about numbers.

4     They make me feel good about helping others; using my experience to contribute to the community.

5     They stimulate my interest in my diabetes and the new advances in care.  I’m getting the new CGM fitted next week (see earlier blog!).

6     There is always someone who has the answer. The community includes HCPs and for me and they are equally generous here and like the rest of the community share resources as well as offering personal support.

7     I found more people ‘like me’ that I would ever have imagined.  I can honestly say I have NEVER had a conversation about diabetes and hormones until the recent chat on @theGBDOC.

8     They make me laugh – a lot.

9     They know how to solve real day to day problems.  Who else would spend an hour chatting about the best place for an insulin pump when wearing shorts and strappy t-shirt?

10    And finally I want to win the #GBBingo.  If you don’t know what that is you are welcome to join a @theGBDOC chat but take care to stay to the end to find out!

Find out more here: http://www.gbdoc.co.uk/Welcome.html : Chat day is Wednesday at 9pm – make a note in your diary – be there or be square 🙂

The nurse in me can’t help adding a bit of reflection…..  I read a paper by Trish Greenhalgh (see reference below – I’m sorry but I think the full text is paywalled).  The paper points to groups of patients operating as ‘communities of practice’ and what resonated with me was the difference between ‘knowing-what’ i.e. the factual context of the disease and ‘knowing-how’; the practical skills needed to live life with diabetes. Diabetes education gives good help with the know-what but the online community can deal with the know-how.

Please leave any comments – I would love to hear your views!

Greenhalgh et al (2011) ‘Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population.’ Journal of Health Service Research Policy Jan;16(1):37-43. Epub 2010 Sep 6

I’ve only ever cried once about my Diabetes


I sometimes feel a little bit vulnerable.  I know this is a bit silly but there was a programme on the BBC in the 1970’s called ‘Survivors’.  All I can remember about it is that the people survived some sort of terrible disaster and had to solve all sorts of problems to live.  I absolutely know this sounds dramatic but I occasionally think about what would happen if that happened for real.  I know the answer – I would die because I need my insulin to live.  When I think this I get a bit scared and uncomfortable even though I know it’s silly.  I was clearly very impressionable as a child/young person and maybe should have been banned from some TV programmes!

This blog is all about my prescriptions – the way I get insulin to live.  They are, and always have been, a real issue for me.  I have worked since I was 16 with no break except around 4 months off when I had my son.  I have never had a job that was less than 10 miles away from where I live, more often than not its been more and therefore not close to my GP.  I depend on my insulin to survive and yet over the years the trouble I have to go to to get my prescriptions makes me sad and frustrated.  I don’t want to take time off work to go and pick up my prescription or even drop off the request and yet sometimes it appears there is no other option at all, at least at my practice. The practice staff don’t seem to understand that whilst I need prescriptions to live I’m not really ill and go to work and can’t just ‘pop down after 10’.  I do understand too that there are procedures to follow but I really feel that they just don’t ‘get’ what this is all about for patients, a view that was reinforced recently when someone on Twitter was equally upset when someone refused her a prescription for her insulin.

And before you all start saying its about ‘planning’ and being ‘responsible’ thats fine, but sometimes life sort of gets in the way.  I’ve been on the same medication for years.  I try really hard not to waste anything at all.  I understand medicines and test strips are expensive; I’m very grateful I truly am and I try hard to remember and plan.

So what has this got to do with my crying?  Well I have never cried over anything to do with my diabetes except one time when I was close to running out of insulin and I had to ring the doctors to request an urgent prescription.  And before anyone starts to judge I’ve only ever run out of insulin once in 33 years – I’m not a serial offender!  I’m human like anyone else and I could have sworn there was a vial in the fridge – it turns out I was mistaken.  When I rang the doctors I virtually had to beg.  I was so upset when I came off the phone I burst into tears with frustration and anger.  You see, insulin really matters!

Over the last 33 years I must have had hundreds of prescriptions and for a long time it went like this: every 6-8 weeks, Sunday evening walk down to docs and drop repeat request slip in, wait the designated 3 days and then try to arrange for someone to pick it up, if I couldn’t do it myself.  Take to the pharmacy and hope they have restocked from last time.  They usually have some of my insulin but will probably need to order more, so I would have to go back again to collect the second lot.  Can you imagine how much time this all takes?

The best thing that ever happened was when I let my pharmacist take more control over my prescriptions and so on.  It was like a weight had been lifted from my shoulders.  They are just so efficient and helpful and stand between me and the practice and negoitiate on my behalf.  When I recently told them how grateful I was they just said they had to provide a good service as if they didn’t I would go somewhere else; they are right but I don’t because they are amazing.

I know some people think that online access to appointments and prescriptions is a ‘fad’ and perhaps is a ‘nice to have’ but I just can’t express how important it is to me.  If I could request my repeat remotely while I am working and indicate where I would like to pick it up I can’t tell you how amazing that would be.

Living with diabetes is complex.  Its a crazy mix of clinical skill, lifestyle choices and, well it affects nearly everything.  But of all of the things over 33 years that have made me cry with frustration it’s repeat prescriptions.  I can’t wait for my practice to go electronic! 

My blog this week feels a bit negative – theres a challenge; a positive blog next week then! Lets hope its the next part of the CGM story!

Its really very complicated!


I got ‘O’level Maths at school; at least I have the certificate to say so. It was 1979 and yes I am that old; I got a grade A too.  I got my sciences as well – good grades. I’m also a nurse; one who is supposed to be a lead for informatics but don’t be misled – I’m no nurse geek.  That leads me to believe, at least on paper, I’m reasonably competent in that sort of ‘mathy-sciencey’ sort of way.

More recently I wasn’t so sure as my story, this time, is about how very complicated it is to manage diabetes. 

A few months ago I decided it was time to be brave and take the plunge; I asked my Diabetes Specialist Nurse (DSN) if I could borrow a Continuous Glucose Monitor (CGM).  A significant step, as it allows you to see what your glucose levels are 24 hours a day and helps you to assess whether the basal (base amount) of insulin you are getting via your pump is about right – so far so good.  My DSN is a real star; we don’t have CGMs where I get my care so she had to ask for a favour from the rep for me to loan a CGM.  I think, (unfortunately – you will see why) she was using me as a ‘test’ patient.  I suspect she thought ‘lets see how anniecoops gets on with this’.

In my case the CGM is a small electrical sensor that is inserted into tissues and wirelessly transmits glucose readings to my insulin pump – with me so far?  Here is a picture of the exact one and my pump:

I’ve learnt to use the pump well over the last three years and have gradually adopted most of the things it will do and added them in to the management of my diabetes.  The pump ‘stuff’ (tubes etc) gets changed around every 3 days and the sensor lasts 6 – still OK?   The results from the CGM via the pump can be seen on a computer programme that shows your readings over the period of time that they were taken.  In this way you can see what’s been happening over time.  A bit of a miracle for me who was brought up with urine testing tablets (but that’s another story).

Ok, so off I go; I have to say having taken the plunge I was vaguely excited!  I had an appointment with my DSN and the CGM lady to get going.  The transmitter is small but it is VERY dependent on the correct insertion of the sensor.  The sensor even has a special ‘insertion device’ like this:

 

It looks harmless and useful doesn’t it – don’t be fooled! The technique for inserting the device is 16 steps long (I’ve just counted from the manual they gave me).  I could go on……. but I feel too traumatised.

What happened over the next two weeks was upsetting as I couldn’t manage to do the inserting myself and being of stoic  nature (see my previous blog) I was so determined to go alone and in doing so have wasted 3-4 sensors.  Physically inserting the device is really hard as there are so many rules about where it goes and how to do it but essentially I needed to put it somewhere where I could see it to remove the attached transmitter for showers etc.  In my experience with my pump your tummy is the best area but my boobs were a major barrier for me to see anything!

The upshot of it all is that I am now waiting for some more sensors and this time I am clear that I can’t do this on my own.  Maybe I can over time but I’m going slowly for now.

Hopefully it doesn’t stop here as once I have the results perhaps then I can use my ‘mathy-sciency’ sort of skills, as we will have to interpret the results; make sense of patterns, ratios, timings and hormones.  There is also the dreaded ‘dawn phenomenon’ (don’t ask). Perhaps then I will impress the DSN with my skills…..

So, if anyone ever tells you managing diabetes is a piece of cake then punch them on the nose for me.  I struggled with the technology and we still have the maths to face, although I really do think I’ll be OK with that…….

If we are going to use all of the devices that are available to help people help themselves then we really do need to think about skills and what sort of help is available.  When I couldn’t get the sensor to transmit the most helpful people were the CGM helpline team who were calm and unflappable.  My DSN was nearly as under confident as I was – bless her (I guess I was her test patient).  If we are going to use all this technology stuff we need to think carefully about how we help patients to understand and be self sufficient, if that’s what they want; I certainly do – it really is very complicated you know!