As you may have gathered from some of my previous posts, I would really like to join Team Pump. So,… I’m really pumped to announce (sorry couldn’t resist the pun :D) that I will be starting insulin pump therapy soon… Mmm, OK, soon-ish (but I’ll get to that). I’ve been dreaming of starting this series of posts (almost since T0), so when I received some positive news at the weekend, it was time to start writing! In this first post, I thought I’d give a bit of background to the pump scene in my area and why I’ve been nagging my team to be put forward for an insulin pump.
I live in Scotland, where the situation seems a little different from the rest of the UK when it comes to the NHS health care system. This is particularly so when thinking of insulin pumps, as the Scottish Government announced in October 2011 that it would make extra funds available to the NHS and its health boards to improve the provision of insulin pump therapy and remove some of the post code lottery aspects (Thank you, Diabetes UK, for excellent campaigning!). The health boards were given notice of this, together with more specific targets in what is the infamous Chief Executive Letter CEL2012/04. In summary, the health boards were expected to increase insulin pump therapy provision to 25% of under-18s with Type 1 Diabetes by March 2013, and triple the number of all patients by March 2015.
For anyone who has been following the discussions in the Public Petitions Committee (Again thank you, Diabetes UK Scotland for so actively campaigning on this! ), you will also know that many health boards are really struggling to meet these targets. This is in part because the funding which came with the CEL2012/04 only provided pumps and their consumables, but no money to finance the additional staff costs which would also be needed. More recently though, the Scottish Government announced in May 2013 that more money will be provided for equipment, and that a dedicated support team would be available for those health boards needing additional support.
My health board is one of those missing the targets: the combination of only a small pump service at the outset and staffing shortages meant that quite soon after the announcements, they had to give in to a 12 month delay in meeting the CEL2012/04 targets. As a patient, I’ve always known that the team was under pressure to deliver these targets, but from my personal perspective it was also at times frustrating to know there is a “cupboard of pumps” just up the road, but no one to hand them out (OK, that cupboard is possibly a myth, but just as a figure of speech ;)). Luckily, the clinic is now finding its feet: new staff hired, plans drawn up, and priority waiting list made.
I asked to be put forward for an insulin pump by my team, for a few reasons. Although clinically for my team, the main reason is reducing the number of hypoglycaemic events, for me, the other two main reasons, which are more quality of life related, are just as important. I love to exercise: playing competitive sport, long distance bike rides and hiking in the Scottish hills. Exercise is actually one of the biggest triggers for my hypos: either because I don’t have the ability to make the fine-scale adjustments needed at short notice, or because of after-effects which can be hard to take into account. Most of the time, this all requires a lot of planning, and over the past “summer-season” (summer isn’t really a season as such where I live), I’ve split my basal injection to allow for greater flexibility of how/when to do these things (without then the need for shoveling glucose tabs at a never-ending pace to avoid lows). I am also quite sensitive to insulin, meaning that over summer I was on average injecting less than 4 units each time (yes, even for my basal). It also means that even the effects of half a unit more or less can be quite significant (and either way generally unpleasant). An insulin pump would really give me the chance to make small doses when needed with probably greater ease and accuracy of delivery!
So even though I didn’t strictly meet the criteria (all that NICE/SIGN, HbA1C, etc), I started asking about insulin pump therapy. First at my regular clinic appointments, and eventually I had an appointment with the consultant in charge of pump therapy at my clinic. After some discussions (and maybe some uhm’ing and ah’ing), he agreed my case could be considered by the pump panel. That panel finally had its meeting recently (I imagine some more uhm’ing and ah’ing), and made a priority waiting list, and I made it on there! The only negative in their letter was in the Post Script, which can be paraphrased as: “PS We expect to start you some time in December to March”. So, now I just need to find the patience to wait 3 to 6 months for the big day to come. I’m sure it will fly by, but I’m impatient by nature…
Finally, when I was growing up, my granddad had a saying at Sunday lunch: “what you don’t ask for, you don’t get!” He used it because he would often have other things still on the hob or hidden in his kitchen pantry, so if you wanted something which wasn’t on the table like extra veg or some gravy, you had to ask for it (or you wouldn’t get it!). The process of being considered for an insulin pump almost feels the same. In the run-up to this, I’ve had many discussions with other people who would like an insulin pump, but don’t strictly meet all the tick-box criteria. Most of them said they have never mentioned it at their clinic appointments because they know they wouldn’t be considered. I would say that there is no definitive way of knowing, and that asking won’t hurt. The scary thing is that some health boards in Scotland are saying they can’t meet the CEL2012/04 targets because of a lack of interest, so if we, patients, don’t express our interest, this opportunity could just pass us by. So my best advice: if you would like an insulin pump, ask for one! Mention to your team that you think you could benefit, and together agree on a list of reasons why an insulin pump would be an improvement for you and how you manage life with diabetes! Remember, what you don’t ask for, you don’t get!
Until next time,
The … Diabetic