After what has been a week of a new experience, I felt it was time to add some conversation about Insulin Pumping in the UK.
In order to get a pump in the UK, NICE guidelines are everything and there are many hoops to jump through. The DAFNE (Dose Adjustment for Normal Eating) course must be completed so that you can be seen to have done some structured education, regardless of whether you have been carb counting for years and it being a waste of time and money for both you and the NHS. In addition, you are expected to see multiple people about suitability, the psychology of it and a whole bunch of other things.
Now, I know this is done with good cause, but it is just another (all be it very expensive) delivery mechanism. The issue, of course, about pump suitability, is that in the UK, if you get the funding, the NHS (local CCG if we are being pedantic) is committing to four years of paying a pump company for supplies. It is committing, on your behalf, to a spend of some £8,000-£10,000 and therefore wants to know that you are committed to using the pump for this duration.
Why, you may ask? Can’t they simply get a pump back and then give it to someone else if a user stops with that pump? It appears that this isn’t the case. If a pump goes back to the NHS, they appear not to be reconditioned or passed out to other users, just in case there is something wrong or some damage done.
As a result, (and this is very dependent on where you live in the UK and your local clinic), it can be fairly difficult to get a pump via the NHS route, especially if you are well, don’t particularly have complications, have a good Hba1C and manage things like dawn phenomenon well due to the way your day works. In fact, as someone who takes good care of your condition, and for whom a pump would probably make it easier, there is positive discrimination against use of a pump and you have to push pretty hard to get one. It can then take a fairly long time.
The UK has only 6% of all T1 adults using pumps (according to the UK Pump Audit 2013 by Diabetes UK, the JDRF and the ABCD) and this is believed to be an overestimate. This compares with >15% in the Netherlands and Germany and around 40% in the USA.
The conclusions drawn from the audit were:
- There was a remarkable level of engagement from clinical teams.
- Approximately 6% of adult patient with type 1 DM are treated with CSII.
- Approximately 19% of paediatric patients with type 1 DM are treated with CSII.
- The majority of centres have no issues with funding for CSII for patients who fulfil the NICE TA 151 criteria.
- The UK continues to lag behind other European countries in the numbers of type 1 DM patients treated with CSII.
- This may, in part, be due to a lack of training capacity for professional staff and a lack of whole time equivalent diabetes nurse specialists with CSII expertise.
It is estimated that were all NICE qualifying patients treated with CSII (pumps) then there would be a coverage of 15%-20% of T1Ds in the UK with pumps. But the NICE criteria are fairly limiting – essentially a large number of hypos and an inability to get the Hba1C below 8% – leaving a lot of us who would benefit from pumps due to variability of insulin requirements, lots of exercise and many injections per day, having to fight for funding.
Now let’s not pretend that pumping is a panacea. It is a form of intensive insulin therapy and as a result, requires involvement from the patient. Actually, it requires quite a lot of involvement from the patient, especially when getting it set up and working.
A lot of testing is needed and the mantra of test, record, review, adjust is critically important when getting everything going. During this period, CGM would be an absolute godsend as monitoring what is going on constantly really requires this level of detail. Sadly, the NHS typically doesn’t fund this when people get going on a pump. A different failing.
Once a pump is in place though, then what? How much support does a patient need? It depends on the patient. Some need a lot more than others. If you have been dynamically managing your diabetes to any great extent then you are unlikely to need very much at all.
If you are moving from classic, static MDI control, then it is likely that you will find it much harder. No wonder the NHS wants you to have a psychological assessment before ascertaining that you should get pump therapy. Can you stick with all of this?
So let’s go back to those numbers. If >40% of US T1s are using pumps, then the majority (if they were in the UK) wouldn’t be those that the NICE guidelines applies to. Why is the number so high? The funding model. They are all on insurance. There isn’t anything like this to find the therapy in the UK.
As a result, the UK ends up as the poor man of the developed world with regard to the options available to those who have T1D. You either fall into the NICE criteria, or you don’t, and then you have a fight on your hands, especially if you are well controlled. The ABCD (Association of British Clinical Diabetologists – yes it does exist!) has a set of criteria that they recommend a pump for, but these, unlike the NICE guidelines, have less sway.
Ultimately, the NICE guidelines are a last resort and the UK is still, even with the update in 2015, stuck in a world where the over-arching group responsible for setting the direction that patient care takes considers pumping a last resort. It should be considered to be far from this and a freedom-giver.
If you refer back to a Journal of Diabetes Nursing paper from 2008, the conclusion at the end of this states:
The overwhelming factor that is contributing to the difference in numbers between the UK, and the US and the rest of Europe seems to be the way in which the insulin pumps and consumables are funded. In the US and the Netherlands, there are no restrictions as the insulin pumps and consumables are fully reimbursed through the individuals’ medical insurance. This is not the case in the UK. Unfortunately, the use of CSII therapy has been seen by NICE as a last resort when every other method of insulin administration has failed. Perhaps if it was more readily available in the UK, we could report better clinical outcomes.
Little seems to have changed.
Your alternative is to put your own cash on the line and self fund, with the caveat that you can’t get your hands on the hardware without the support of a healthcare professional in spite of your ability to use such a device. If you can programme a VCR (old school) or use IFTTT on a smartphone then an insulin pump is really a very simple device.
So, if you want a pump, where you are is important. And so is your condition.
Why there is no ability for the NHS to consider a partial funding model, or for pump reuse to be the norm are two very large questions that are sitting there begging to be answered, and no-one seems to want to do so!
The NHS is now encouraged to give patients choice and to involve them in decision making and yet, within this, there is very little choice. Plus ca change…