Stop Me (If you've heard it all before)

Stop Me (If you've heard it all before) This is a re-edit and repeat of a post I did back in March, but the growing frustration felt by me and others, both patients and healthcare professionals, about the postcode lottery of access to flash glucose monitoring leads me to repeat myself. My habit of finding a song title for all posts led me to a lesser known song from 1976 by a somewhat under-rated artist, in my opinion one of the finest and most expressively soulful voices - Billy Ocean. Just listen to the song by clicking the link if you're already bored, or listen and read on...

Yes, you have heard it all before, but I and many others won't shut up until fairness and common sense prevail.

Diabetes is a condition, not a disease. Type One may one day be “cured”, but not in the foreseeable future in a manner which is likely to be available to people my age and considerably younger. Those of us already living with Type One Diabetes should accept that we are likely to see out our days with our unwanted friend T1D; a cure is a desirable and achievable aim, but for those yet to be diagnosed in my view.

The best hope for those of us living with it is therefore to have access to the best possible assistance in living with it, and for that to happen, technology must increasingly be seen as an essential, rather than some kind of desirable add-on. 

A condition not a disease: most diseases require drugs, either to reverse and cure them, or to make them bearable and prolong life. However, a condition which, if well managed, is not degenerative requires assistance with self-care to ensure that those living with it can do all that they would do without the condition, and not become a burden on an overstretched healthcare system.

In this sense (and I know that to say so is controversial) Type One Diabetes is perhaps a disability as much as a disease, and people with other disabilities, however minor, benefit from an increasing range of technological solutions to make their lives liveable and as normal as possible. Some examples are so common that they are overlooked: those with less than perfect vision wear glasses; those with tooth damage or decay get fillings and crowns; those with hearing loss use hearing aids; those with minor heart problems use a pacemaker; those who have lost limbs use prosthetics or wheelchairs. The list is endless.

So why the apparent unwillingness to use technology to help those with Type One Diabetes? There is at present great frustration in the Type One community at the postcode lottery of access to FreeStyleLibre flash glucose monitoring, a high-tech but relatively low-cost innovation which allows people with diabetes to carry out the all-important monitoring of their blood sugar levels in a manner which is convenient, non-invasive and infinitely more informative than finger-prick testing. There is suspicion and even hostility towards it from some, even within the healthcare profession, yet people with diabetes and many of those who care for them are overwhelmingly convinced of its short and long term benefits. The CCGs who are resisting accepting it to their approved listings for NHS availability, or who are paying lip service but imposing prohibitive criteria, cite its cost yet appear focused on just the headline up-front cost of around £70 per month. This despite the fact that it is already widely accepted that this cost is broadly comparable to that of an adequate supply of finger prick tests, without even considering the longer-term cost benefits of improved control.

However more significantly, I was struck by the views of a diabetes consultant who spoke at the Rise of the Machines event in February. He pointed out that there are many drugs in very widespread use whose cost is far greater. For example some treatments for Type Two Diabetes (a far more common condition) such as GLP-1 Agonists cost £68 -78 per month. This is a minor cost when compared with other drugs such as Infliximab which is used to treat auto-immune conditions such as Arthritis & Crohn's. Patients typically receive infusions every 8 weeks, costing £1500-2000 dependant on dose.

The consultant who spoke argued that FreeStyleLibre sensors at £70 per patient per month would have been accepted readily and with minimal dissent if it were a drug. The suspicion and even hostility comes from the fact of it being a piece of high-tech kit and as such points to the need for a change of mind-set.

I for one very much hope that we are on the cusp of just such a change. Technology is everywhere, and devices of a level of sophistication that would have been unimaginable even twenty years ago are now part of all that we do. Smartphones and satnavs for example, have taken over how we communicate and travel, yet would have appeared to be expensive luxuries in the recent past.

Those who regulate the access to therapies for people with Type One Diabetes need to realise that for most of us, we need gadgets as well as drugs. The “drug” for Type One is well-established, fully effective and aside from minor potential developments such as smart insulin, what we use today is fine. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive yet threatens our day-to-day well-being 24 hours a day, every day. And we are required to self-administer and regulate the effects of this potentially lethal drug without medical supervision for 99% of our time. We survive and flourish best when helped by machines which can help us to monitor and react to the insulin which keeps us alive.

With the help of technology and machines, accessible to the many and not just the few, there is every reason for me to believe not only that with Diabetes I Will Survive, but that I and my many friends with Type One will live long and prosper. And we'll cost the NHS a whole lot less in the long run.

Deal??

Ride My SeeSaw

There's no shortage of metaphors to describe life with Type One diabetes, so no shortage of song titles for my diabetes-related posts. It's all about balance, so let's say this one is all about trying to Ride my Seesaw, and the Moody Blues had a song for that. Click on the above title, for one of those "so uncool it's cool" videos.

I sometimes think it has all been said already about Flash Glucose monitoring, but I hope that this post might just help those working in CCGs around the UK in their deliberations on whether to approve access to FreeStyleLibre sensors on the NHS for people living with Type One Diabetes.

In personal terms, I live in an area where a policy is “under review” and I am cautiously more optimistic of a positive outcome having had the opportunity to put the case to the CCG at a public meeting a few weeks ago.

But in less selfish terms, I was dismayed last week when a good friend of mine from the diabetes community (living in West London) told me that she had been informed by her GP that she would no longer be prescribed FreeStyleLibre sensors, because they are “too expensive”. The woman concerned is herself a Type One who cares for her 5 year old daughter who is also Type One, and she had initially been prescribed sensors for herself and her daughter.

In other areas of the UK, she and her daughter would both be eligible for sensors on the NHS and would be benefiting from more frequent, non-invasive testing, more detailed information about the direction of travel of blood sugar levels and graphical data enabling her better to manage her and her child's sugar levels, thereby reducing the risk of serious and costly complications in the future. And equally importantly in my view, doing so with less mental and emotional strain. All at a cost to the NHS which is very modest compared to that used for many commonly prescribed drugs and treatments for other medical conditions.

So why does this matter? Are we being treated unfairly or are we, as a BBC journalist who interviewed me recently put it “just after the latest gizmo”?

Well, I have been a self-funding FreeStyleLibre user for over three years, and this past week, a little bit of Libre-assisted self-management on my part brought the issue into focus for me, making me realise how hugely beneficial even this relatively unsophisticated piece of kit can be.  It enables us to keep blood sugar levels close to the desirable range and more importantly to prevent longer term average levels from creeping upwards, causing the sort of insidious damage which can and does lead to serious complications.

Let me explain: I had a very busy two months in May and June, returning to my former place of work for a stint as an exam invigilator along with a number of one-off events including a five day visit to France leading a twin town delegation (driving there and back) and a two day filming assignment in London for a forthcoming appearance on BBC TV's “Pointless”. During this time, I must confess that my diabetes management reverted somewhat to the strategy that I used throughout most of the first sixteen years of living with the condition: I allowed my BG levels to err on the high side, aware that this would minimise the risk of inconvenient, embarrassing or even dangerous hypos.

This is a perfectly reasonable strategy given that I was appearing in a primetime TV quiz show, driving a 1000 mile round trip and invigilating public examinations at various times, but it is frightening how quickly a bit of neglect of tight control pushes averages up. Without FreestyleLibre and its detailed feedback, the upwards creep of averages would probably have gone unnoticed until an HbA1c result at a clinic review. And of course subtle damage is already under way whenever blood sugars are out of range for any length of time.

But for those like me who can use it wisely without becoming over-obsessed with every twist and turn of blood sugar, the FreestyleLibre is an invaluable source of information, a sort of Dia-Jiminy Cricket who can act as a conscience if things are going astray. A week or so ago, I looked at my average BG and noted that it had crept up to 8.9, having typically been around 7 since I started on FreeStyle Libre 3 years ago.

So last week, which was significantly less busy than the previous few, I resolved to improve things. I decided just to keep a closer eye on my blood glucose, to check levels a little more frequently and to react to them with correction bolus doses or snacks. Nothing clever, no elaborate calculations: just a common-sense response to some easily interpreted data presented on my phone screen.

And guess what, in just one week, things got better. Look at these screen shots, firstly this one showing the 90 day average, with the tell-tale orange bars reflecting those higher-than-desirable levels of recent busy weeks:

And secondly this one showing the results of my week of more intensive checking and reacting, with the green bars showing a significant improvement and the average at 6.7, down from 8.4:

Could this have been achieved with conventional finger prick testing? Theoretically yes, but in practice no. The ease of frequent testing, the instantly available average data, the trend arrow to enable safe and effective reactions to impending highs and lows are just not possible without a FreestyleLibre.  And yes, the inner child who is never far from the surface in this 60-year-old me, rather enjoys the reward of seeing those green bars, like getting merit stickers from a teacher. I'm easily pleased and amused.

But perhaps most significantly, it’s the fact that it helps me to self-manage my short and long-term well-being. And if it’s cost that is causing some CCGs to either refuse to prescribe, or to impose ridiculously narrow criteria, then they should perhaps consider that helping and encouraging people with Type One diabetes to self-manage their condition with the help of a relatively cheap piece of technology is a very sound cost-saving investment.