One of the reasons I started my blog was to provide the kind of information I felt was missing, and information on how to get an insulin pump in the UK is definitely an area where I feel information is lacking online. There are some great websites, such as INPUT, but I also wanted to write about my own experience of getting an insulin pump. Also, before I started my Omnipod on 19 February 2018, I had been trying to get a pump for over a year, so hopefully some of the lessons I’ve learned will make this an easier process for someone reading this blog post/labour of love/mammoth 4800 word undertaking.
Part One: An introduction to insulin pumps in the UK
The first NHS funded-pumps were approved in 2003, so in the grand scheme of things, fifteen years isn’t a terribly long time. A lot of people I speak to on social media seem to think that the UK is really lagging behind the times in terms of pumps, and that’s certainly true to an extent, but it’s also true that the representation of technology for type ones on social media is skewed – if you can afford a smartphone to blog about your experience of type one, you’re obviously in a privileged position. It might seem like every Tom, Dick, and Harry has a pump and a CGM, but the real numbers are much smaller. In the UK, about 15.3% of type one diabetics use an insulin pump. The figure for CGMs is likely much smaller, and because most CGM users self-fund, the data is neither available or reliable. That is to say that not everyone who has a pump also has a CGM – in fact, the majority of my friends who use CGMs or Flash are on MDIs.
Who do I talk to about getting a pump?
A pump can only be started in a specialist diabetes clinic, so whilst you can talk to your GP about a pump (if they even know what one is!), you will need to be referred to a diabetes unit at a hospital. Some clinics are what are informally known as pro-pump – these are clinics that actively encourage type one patients to move to pump therapy if they think that the patient will benefit, and the patient is willing to put in the extra effort – don’t kid yourself into thinking that because a pump only has to be changed every three-five days, it’s less hassle, because it isn’t. However the extra effort should give you greater control.
How do I know if my clinic is pro-pump?
Essentially, you will probably already know if your clinic is pro-pump if they have offered you a pump in the past and you have, for whatever reason, chosen not to accept it. If you’re new to your clinic or you just aren’t sure, call or email and ask what their criteria for pump funding are. You should be able to gauge their stance pretty easily.
What if my clinic won’t give me a pump?
If your current clinic doesn’t approve you for a pump for whatever reason, you are entitled to be referred to a different clinic through your GP. If you know that your clinic isn’t willing to give you a pump from previous experience, it might still be worth making you case again, as staff change so do attitudes. It might be a case of being understaffed at the time you first enquired about a pump, or it might be that a particular consultant didn’t see the merits of pump therapy and they have left. It may take moving clinics to find a clinic willing to give you a pump, so be prepared for this.
How do I qualify for funding?
In order to get a pump in the UK you will likely have to meet the NICE criteria for pump funding. This is what the most up to date (reviewed but not changed in 2011) NICE guidance recommends; the key word here being ‘recommend’ – there is no onus on the NHS to provide pump therapy even if you meet the below criteria:
‘Continuous subcutaneous insulin infusion (CSII or ‘insulin pump’) therapy is recommended as a treatment option for adults and children 12 years and older with type 1 diabetes mellitus provided that:
- attempts to achieve target haemoglobin A1c (HbA1c) levels with multiple daily injections (MDIs) result in the person experiencing disabling hypoglycaemia. For the purpose of this guidance, disabling hypoglycaemia is defined as the repeated and unpredictable occurrence of hypoglycaemia that results in persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life
- HbA1c levels have remained high (that is, at 8.5% [69 mmol/mol] or above) on MDI therapy (including, if appropriate, the use of long-acting insulin analogues) despite a high level of care.’
So, essentially you need to demonstrate that despite your best efforts to control your diabetes, you are experiencing unpreventable, frequent hypos, OR an elevated a1c. However, there are additional criteria which may qualify for a pump such as pregnancy, but these are determined on a clinic by clinic basis, so you will need to ask your clinic about these extra criteria.
What about carb counting courses?
In addition to meeting one of these requirements, you will also need to attend or have attended a carb-counting course such as DAFNE. Whilst this isn’t legally essential in order to start a pump, I haven’t heard of anyone who hasn’t had to fulfil this pre-requisite. Ultimately, it makes sense for your clinic to ensure that your carb counting skills are up to standard because pump therapy requires that you know things like your carb to insulin ratios. Without this knowledge, you will get very little out of a pump. There is no maximum waiting time for a carb counting course, but most clinics offer at least two per year, so a six month wait is common. Also, if you’ve already done a carb counting course, that will count. I personally know someone who had done one carb counting course almost ten years before she starting pumping, and that was still considered acceptable.
Part Two: Which pumps are available in the UK?
Different clinics offer different pumps – some offer all of the pumps listed below, others offer just one. You will need to consider whether you would be happy with any insulin pump, or if there is only one pump you would be happy with. Most clinics offer the Medtronic 640G, so that is likely to be the one offered to you. You can make a case for a certain pump, but there is no guarantee that you will be offered it.
As far as I’m aware, in the UK there are seven pumps available on the NHS, though not every clinic offers every pump. Apart from the Omnipod, which I will talk about in greater detail later in this post, I have summarised what the USPs of each pump are, and included some mini reviews from pump users.
Of my UK friends using pumps in or the process of getting a pump, this the breakdown of pumps:
- Omnipod: 4 (including me with a further 2 waiting on a start date, and 2 waiting on approval)
- Medtronic 640G: 8
- Accu-Chek Insight: 1
- I don’t know anyone using Cellnovo or Dana. I do know a few people using Animas, but as you read on you’ll realise why I haven’t included any reviews.
Oftentimes a pump is introduced to a clinic when one patient makes an Individual Funding Request (IFR) for a particular pump for a particular reason – for example, I was told by one clinic that Omnipod is only offered to patients who compete in extreme sports. Sometimes, this then means that getting said pump becomes much easier for future patients as a DSN is already trained in said pump, and because of that investment of time and money, it becomes financially sensible to offer more of said pump. Obviously in this scenario, the initial patient needs to have a particularly good reason to require a patch pump, but this might be worth the effort if you have a reason. N.B. The argument that you need your pump to be waterproof will likely not work because Medtronic is waterproof.
Medtronic 640G. This is the most commonly used insulin pump in the UK, and is offered by most clinics. It has a variety of compatible infusion sets, so if one doesn’t work for you, there are several to try. Additionally, it has one clear advantage over other pumps, but only if you pay for or receive NHS funding (notoriously difficult to get) for its compatible CGM – Enlite. It uses a feature called SmartGuard to automatically suspend your insulin when you’re going low (you can currently only do this manually on other pumps).
Medtronic user reviews
Medtronic user Taylor* is 28 and lives in the Midlands. She was diagnosed in 2003. She has been using a Medtronic 640G insulin pump since October 2016.
Why did you choose Medtronic? I was offered both the 640G and the Accu-Chek pump, but I wasn’t able to input my CGM data into the Accu-chek pump, so I went with the Medtronic.
Would you choose a different pump next time, and why? Nope, I’m very happy with this model.
How easy was it to get a pump at your clinic? Really easy. I actually refused to even consider a pump on two separate meetings with my DSN. I did not like the idea of something being attached to me.
Medtronic user Becky is 23 and lives in London. She was diagnosed in 2005. She has been using a Medtronic 640G insulin pump since July 2017. Follow Becky on Instagram. She’s currently in need of used/spare Medtronic tubing for her degree project, so please do get in touch with her if you have any to send.
Why did you choose Medtronic? I chose this pump as I didn’t really know much about pumps when I decided to go onto one and my DSN suggested the 640G as that’s what they offered at [my diabetes unit].
Would you choose a different pump next time, and why? I don’t think so. I’m happy with this one so far. I would have liked to try Omnipod but it wasn’t on offer to me.
How easy was it to get a pump at your clinic? Surprisingly easy. I asked about potentially going on one in April 2017 and had one by July 2017.
Medtronic user Kitty* is 27 and lives in North-East England. She was diagnosed in 1993. She has been using an insulin pump since April 2017 alongside NHS-funded Enlite sensors. She has since stopped using the Enlite sensors, but continued with the pump.
Why did you choose Medtronic? I chose my pump because of the SmartGuard Enlite CGM that only works with the 640G but [the CGM] turned out to be a huge disappointment.
Would you choose a different pump next time, and why? It’s a tricky a question but I’m quite happy with the pump I have now.
How easy was it to get a pump at your clinic? It was a complete nightmare getting a pump.
Medtronic user Mia is 20 and was approved for a pump in Surrey, but now receives her pump care in Cambridge (which she considers to be very good) where she is studying Medicine. She was diagnosed in 2007. She started pumping since 2008. She has been using Medtronic for 5.5 years, with 4 years on the 722. Before that she used the Animas Vibe for 4 years. Follow Mia on Instagram, and head over to her Youtube channel for vlogs on living with type one, and being an all-round sporty diabadass.
Why did you choose Medtronic? My reasons were similar to Kitty’s. I was also keen on having a waterproof pump as my first Medtronic 722 broke from sweat at a dance rehearsal (lol)!
Would you choose a different pump next time, and why? Just because I’ve had so many issues with the 640G clip not being strong enough when I’m spinning [she ice-skates] or leaping around. Maybe I’d go for Omnipod but I’m not sure – I like my 640G and I liked my Animas Vibe too!
How easy was it to get a pump at your clinic? It was easy for me because I got my first one when I was 10, when funding for pumps really became a “thing”! Before that, my parents had considered self-funding. It’s much easier to get funding when you’re under 18.
Roche Accu-chek Combo and Insight. The Insight is the newer pump, so you’re more likely to encounter this option. It uses pre-filled cartridges – they don’t require filling the pump with insulin from a vial with a syringe (unlike with the Combo). The Insight also has a remote which looks like and functions as a BG meter (almost identical to the Accu-chek Expert meter if you’re familiar with it). Therefore it’s a good option in-between a patch pump and a tubed pump as you don’t have to handle the pump itself in order to bolus, although you are still attached to tubing.
Roche user Lucy is 24 and was approved for a pump in Birmingham where she teaches music. She was diagnosed in 2006. She started pumping since 2013 with the Accu-Chek Aviva Combo, and moved to the Insight in 2015. She started pumping because she was experiencing constant hypos, which left her unable to exercise and achieve an ideal a1c. Follow Lucy on Instagram, and check out her blog!
Why did you choose Roche? There were a number of different factors that led to me choosing Roche. One of the main reasons was the ability to deliver a bolus via a separate bluetooth handset to the pump, which meant I wouldn’t have to get my pump out every time I needed to bolus. In my opinion, it was the discreetest pump available at my clinic and discretion was a big concern of mine at the time (though I don’t care anymore!) The Insight also has this feature. Other reasons were as follows: Roche has a 24 hour care line should there be a pump failure; I preferred pumps with tubing because I could choose where I put the pump from day to day (pocket, clipped on waistbands, bras etc); the therapy options seemed ideal for my needs because I can have 5 different basal profiles and I can micro-bolus to 0.05 units; my clinic seemed most confident with Roche and they had a very good relationship with the local rep – so much so that I still attend regular ‘pump evenings’ (an evening of food, socialising and talks from professionals and patients on T1D), organised and paid for by Roche; and the pump software package makes data reading and adjustments much easier.
Would you choose a different pump next time, and why? After five years, I can honestly say that I have never had a bad experience with Roche as a company, they’ve been faultless. If I could wish for any additions to the insight, they would be: the ability to manually input BG readings, allowing for bolus data to be calculated from FGM/CGM readings; I’d make it waterproof (I’ve not been swimming regularly since moving to pump therapy for this reason, as I can’t have it off for over 1 hour and I’m a bit of a faffer…); and I’d make the handset faster!
How easy was it to get a pump at your clinic? My experience of getting a pump was certainly different to many others’. I was living away from home during my undergrad at the time but I’d kept my care at home. I mentioned the troubles I was having to my DSN during a routine appointment at my clinic and I told her that I had been looking into pump therapy and that I wanted to give it a try. During the summer break, I trialled and began pump therapy. It was a very quick turn around! This was helped by me already being a DAFNE graduate and meeting the NICE criteria. My clinic certainly leans towards being pro-pump, too.
Animas Vibe. This is an odd one because although the parent company (Johnson and Johnson) discontinued production in 2017, the supplies aren’t being discontinued until 2020. So, if a clinic has an unopened Animas pump in their cupboard, they could still technically start a patient on it, but only give them a three year contract. The Animas is the pump that works with the Dexcom G4 sensor integrated system, which might indicate that the G4 will be discontinued around 2020.
Cellnovo. This is the other patch pump available in the UK. I don’t personally know anybody who uses it.
Dana Diabecare R. I had never heard of this one until searching online for pumps available in the UK. Again, I don’t know anyone using this pump.
If you would like me to add your review, please message me here or on Instagram. Anonymous reviews are very welcome.
Once you have been approved for a pump, your clinic will write to your CCG for funding. If your consultant applies for funding, it is highly likely that you will be approved (if not, please seek advice from INPUT as this is a more complex situation). Once the funding has been approved, your clinic will arrange a start date. This date can be anything from six weeks to six months after you’re approved, though more likely somewhere in-between. This date is dependent on the availability of at least two people: a DSN trained in the particular pump, a rep from the pump company, and likely a few other patients who will be in the same training session.
Part three: My pump experience
I first decided that I wanted an insulin pump, specifically the Omnipod, when watching this video made by the dauphine of diabetes that is Jen Grieves. I think this was before Christmas 2016, and I didn’t start pumping until February 2018, so it was about a year long slog to get a pump. It didn’t help that I moved three times in 2017, but the bigger obstacle was a particularly untrustworthy clinic that promised me a pump and then delayed the start date multiple times. By the time I had a proper start date (on my birthday nonetheless), I knew that I would have moved, so I mentioned this. For the first time, they replied to my email within a week – with a dismissal from their clinic. I was absolutely gutted.
As soon as I had moved, I found a GP surgery with plenty of doctors (in case the first one didn’t feel like referring me to the diabetes unit at the hospital – this has happened before). Luckily, the first GP I saw knew a little bit about diabetes, so he understood how dire my situation was (frequent, severe hypos requiring either ambulance call-outs or hospitalisation) and called the diabetic unit there and then. I think I had to wait less than a fortnight before being seen by one of the DSNs at the clinic. I made my case for a pump, and she was really receptive. I wasn’t able to see a consultant for another six weeks but I felt really positive about my meeting.
When I saw the consultant, I expected the appointment to be more of a formality, but instead it was a total disaster. He was concerned about my hypo unawareness but made some bizarre suggestions: that I aim for a BG of 10/180 at all times, and I bring my a1c up from 6.6 to 8. I was totally unconvinced by these ideas, and I made this very clear to him. I asked him whether he would approve me for a pump and he told me in no uncertain terms that he didn’t think a pump would be beneficial for me. It was a pretty horrible appointment and I left deflated and in tears.
Undeterred, I called the unit a few days later and asked to see one of the DSNs. I explained what he’d told me, and I’ll skip a few details here, but I moved consultants. This time, I was incredibly lucky. I saw my new consultant expecting to make a case for the Omnipod (future Dexcom compatibility and clumsiness), which she let me make, then we had a good chuckle when she realised that I’d already been approved for funding. I would say that I was very lucky to have such a wonderful and supportive DSN, but I think the take home message here is to persist. If I had given up after the first consultant said no, I would have no pump, and if I’d really listened, pretty poor control too. Instead, I started pumping about three months later, and it was absolutely worth the wait.
What do I like about Omnipod?
- No tubing to get caught. I’m comically clumsy, so this is a real bonus.
- Pods can be easily recycled – my sharps bin has never been emptier.
- The PDM, although not the prettiest device in the world, is surprisingly light.
- Changing a pod only takes a few minutes, and creates a minimal amount of waste.
- The built in meter uses tiny test strips (I hate how much waste diabetes creates) and only requires a very small sample of blood. Also, I am yet to have a single error message, which makes a nice change from the error-message-ridden Accu-Chek Expert meter I had before.
What do I dislike about the Omnipod?
- I am certain my technique is crappo, but I detest trying to get air bubbles out of the crappy syringes Omnipod supplies.
- Current PDM (see below for an update on the PDM) is a bit fiddly to use, especially when adjusting basal rates.
- The pods have varying rates of absorption – I find the absorption in my thighs to be counterintuitively slow, so much so that I get a massive spike even with a pre-bolus.
- Giving a large bolus takes a couple of minutes. Although you don’t need to keep the PDM in range (more on that in the next point) it makes pre-bolusing a little harder.
- I didn’t rate the rep who trained my group start. I felt that he missed out pertinent information, such as that you don’t need to keep your PDM in range after you’ve started to deliver a bolus.
A further review from veteran Omnipod user Alice
Omnipod user Alice is 28 and lives in West Sussex. She was diagnosed in 2000. She has been using an insulin pump since 2011 – she started on Omnipod in July 2014 and has stuck with it ever since. Follow Alice on Instagram, and check out her new blog.
Why did you choose Omnipod? It’s tubeless, robust, small, and discreet.
Would you choose a different pump next time, and why? I’ve chosen to stay with it for another year at least – I love it! I personally can’t see any negatives to the Omnipod for those living in the UK. The only downside is that you can’t remove unused insulin or keep it on for more than three days (which is again really only an issue if you’re paying for your insulin). I also love how there’s a massive community of podders who personalise or decorate their pods – it’s great for the younger T1Ds, or big kids like myself!
How easy was it to get a pump at your clinic? I was asked if I wanted one, and bizarrely given free range with choices. [Tilly: don’t get your hopes up – this rarely happens!] My consultant chose me to be given a pump in an initial round of pump funding at my clinic in 2007, but in an annoying NHS mix-up, I got lost in their system. So when it came to an appointment in 2013, he was shocked that I still didn’t gave a pump, and offered me a start date within 8 weeks, but as I due to get married, I postponed my start date until after my wedding.
An alternative route: self-funding
No data exists for the number of pump users self-funding, but I personally know one person who has gone this route having felt that her/his quality of life was not good enough on MDIs, and having exhausted trying to get a pump on the NHS. Beware that self-funding a pump isn’t as simple as buying one – you will need to see a private consultant and buy your pump through a private medical practice. One such practice offers the Omnipod for £3180 per year, not including the cost of appointments. N.B. This is not to say that this is how much the Omnipod costs the NHS.
*Some names have been changed for privacy reasons, but biographical details remain unchanged.
Part four: Omnipod news from ATTD 2018
What’s new from Omnipod?
From July, Insulet (the current US distributor of Omnipod) will be taking over the running of Omnipod from Ypsomed in Europe. This also means that Omnipod will be coming to more European countries than ever before. The move won’t affect existing podders except for a change in contact details when ordering supplies, and said supplies will come in blue Insulet boxes rather than green Ypsomed ones.
A new PDM
The next generation pump from Insulet will be the Omnipod Dash although no release date has been set, I got the impression at ATTD that this it will be coming out in 2018/19. The Omnipod Dash will feature a much-needed upgrade of the PDM device – no more gameboy vibes! It will be an Android touchscreen device which will be much more user friendly especially when adjusting basal rates and other things that are fiddly on the current PDM. I also asked the Omnipod reps at ATTD how the new system will affect current podders who, in the UK at least, are standardly tied in to a four year contract. I was told that existing podders will be upgraded to the new system, but don’t take this as confirmation of that move, as this was an informal conversation!
Furthermore, the PDM will no longer include a built-in meter, which addresses the move from finger stick testing on the PDM to users inputting data from their CGMs and Flash monitors. Instead Insulet will be partnering with Ascensia to offer their Contour Next One BG meter to use alongside the Omnipod Dash. Personally, I’m not thrilled about this move as I don’t love the Contour Next One meter because I’ve had two that broke within a few months. Also, I like being able to check my BGs against Dexcom if my readings don’t match my symptoms, which will be made more inconvenient by having to carry an extra piece of kit. I can see the advantage of a lighter PDM, especially for those who exclusively rely on CGM or Flash data, but I think it’s unlikely that many users will even bother to carry the extra BG meter.
The PDM will also have an app so that users can see some of their PDM data on their phones. The PDM will still be necessary in order to give a bolus, but it will mean that users can check their phone to see what’s going on in terms of IOB or when an temporary basal rate is due to finish, rather than having to take out the separate PDM. I would imagine the move towards a phone app with the ability to bolus is on the cards, but considering the current US system whereby Dexcom requires the purchase of the separate receiver in order to meet FDA approval, I wouldn’t hold my breath.
A new pod?
Despite misrepresentative photos, the pod itself will remain the same. Whilst the PDM hasn’t been upgraded since 2009 (when it moved to a colour PDM), the pod was upgraded/made smaller back in 2013. So, if you trial an Omnipod demo pod, this is the pod Omnipod will be using for the foreseeable future.
A closed loop system
Also on the horizon (LOL) is the Omnipod Horizon closed-loop system, which has already proven successful in initial clinical trials – with participants achieving 85% time in range. The device will work with a Dexcom CGM via bluetooth, alongside the new PDM, to provide Omnipod’s first closed loop pump. No date on when this is due to be released, but Diatribe are speculating on the date of 2020.
Data from the Omnipod Symposium at ATTD 2018 showed promising results especially in a reduction in nocturnal hypoglycaemia: ‘no subject had hypoglycaemia <3.9 mmol/L during either of the 2 study nights with moderate intensity exercise performed in the afternoon.’
Thank you if you’ve read this far – you deserve a medal! This post has been quite the labour of love, but I would like to say an extra big, extra special thank you to all of the girls in my UK pump group chat without whom this post would be much less informative. Also, thank you to Dexcom for taking me to ATTD so that I could hear about Omnipod’s news!