Libre Limbo

As of the beginning of April the new national NHS England criteria for obtaining Freestyle Libre on prescription came into effect. This is who it says should have access to Libre on the NHS:

1. People with Type 1 diabetes OR with any form of diabetes on hemodialysis and on insulin treatment who, in either of the above, are clinically indicated as requiring intensive monitoring >8 times daily, as demonstrated on a meter download/review over the past 3 months OR with diabetes associated with cystic fibrosis on insulin treatment
2. Pregnant women with Type 1 Diabetes -12 months in total inclusive of post-delivery period.
3. People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability who require carers to support glucose monitoring and insulin management. 
4. People with Type 1 diabetes for whom the specialist diabetes MDT determines have occupational (e.g. working in insufficiently hygienic conditions to safely facilitate finger-prick testing) or psychosocial circumstances that warrant a 6-month trial of Libre with appropriate adjunct support. 
5. Previous self-funders of Flash Glucose Monitors with Type 1 diabetes where those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since self-funding.
6. For those with Type 1 diabetes and recurrent severe hypoglycemia or impaired awareness of hypoglycemia, NICE suggests that Continuous Glucose Monitoring with an alarm is the standard. Other evidence-based alternatives with NICE guidance or NICE TA support are pump therapy, psychological support, structured education, islet transplantation and whole pancreas transplantation.However, if the person with diabetes and their clinician consider that a Flash Glucose Monitoring system would be more appropriate for the individual’s specific situation, then this can be considered.

Other requirements:

1. Education on Flash Glucose Monitoring has been provided (online or in person)
2. Agree to scan glucose levels no less than 8 times per day and use the sensor >70% of the time.
   
3. Agree to regular reviews with the local clinical team.
4. Previous attendance, or due consideration given to future attendance, at a Type 1 diabetes structured education programme (DAFNE or equivalent if available locally)

Well this all sounds very promising for my perforated fingers... but unfortunately I find myself somewhat in Libre limbo.

I had my annual toe-tickling / BP / weight check appointment at my GP surgery towards the end of March, and mentioned these new criteria and asked about Libre. The nurse who runs the diabetes reviews at my surgery is also one of the DSNs at the hospital pump clinic that I attend, and was able to tell me that all Libre requests in my area were going to be handled in 'secondary care' (that's 'at the hospital' for those that don't speak fluent Healthcare Professional). The suggestion made to me was that since there was not really time in people's regular clinic appointments to deal with all this stuff, that special extra sessions would be being arranged for anyone who was interested in Libre.

At some point fairly soon I'm pretty sure I'll be contacted for my annual* pump clinic appointment (last one was over a year ago). So now I don't know whether to wait and see whether I get an appointment and ask the same nurse I saw a few weeks back (but sat at a different desk) whether I can get another appointment at one of the Libre sessions. Or whether I should try to work my way through the labyrinthine appointment telephone system to try to speak to someone and ask a) if they've ever heard of these extra clinics and b) whether I can come. Then wait for that appointment to come through and see what they say.

* actual timings may vary

Frankly the very thought of it all is exhausting, and I am unable to even summon the energy to decide which of those options is the least teeth grinding, let alone make any of the necessary phone calls.

EDIT: The day after I posted this, I got the letter to book my appointment for pump clinic, so it looks like I'll be rolling with option 1. Next available appointment was mid July, so I've a little while to wait yet I think.

In other Libre news, as part of my position as one of the PWD representatives on the Diabetes Technology Network (DTN) I was involved in reviewing and contributing to a set of excellent video resources to help both people with diabetes and their families, along with nurses and clinicans get the most out of the Freestyle Libre. As part of the project I offered my own meandering thoughts on living with Libre, and took part in a live 'webcast' of the videos. If you missed it you can catch up with the videos and also a recording of the Q&A session on the Association of British Clinical Diabetologists website. The full set of videos and further webcasts will be added as the weeks go by and in all should provide an excellent source of information and guidance as more and more people get access to Freestyle Libre.

Disclaimer. DTN/ABCD paid my train fare to get to the initial meeting to discuss/review the course content, and then to the video recordings. They also gave me a thank-you card with an entirely unexpected voucher in it which was very lovely of them. I was not paid to take part or write this post, and all opinions shared are entirely my own. I mean... who else would want them?

Frestyle Libre available on prescription. Again.

It's with a certain sense of deja-vu that I mark World Diabetes Day this year with the news that Abbott's Freestyle Libre flash glucose monitor will become available to people with type 1 diabetes in the UK on prescription from April 2019. Cue inevitable Twitter meltdown.

Hang on... haven't we been here before?
Well yes. And no. You may remember me writing a post in September last year on this very subject.

Technically the Libre was made available on prescription on 1st November 2017, "subject to local healthcare economic approval". Prior to that 2017 announcement various Big Health and Diabetes Organisations (such as the Regional Medicines Optimisation Committee, NICE and a collaboration of Diabetes UK, ABCD, JDRF and INPUT) put together helpful documents, guidance and national position statements about what Libre was, who it might be useful for and the evidence to support its use.

What followed was an unholy scrabble of various different CCGs across the UK who either adopted Libre under RMOC criteria, published their own set of rules (which often had bizarre additional requirements that seemed to bear no relation to Libre and its use, such as blood pressure results) or denied access entirely saying that there wasn't enough evidence, or that they didn't like the colour of the packaging or any number of "Whatever we do, let's kick this can as far down the road as we can manage" strategies. And all the while those CCGs in the 'no' camp had meetings and re-reviewed the evidence that had already helpfully been reviewed for them, and invested time (and presumably money) into reinventing all the wheels they could see.

So what emerged was variously described as a 'postcode lottery', 'Libre lotto' and 'bloomin outrage' and across the country people living in the (at the last count) 51 CCGs to have said a big fat NO to prescribing Libre got together and organised themselves to petition, badger and generally make a fuss about it.

Meanwhile, in areas where Libre was more freely prescribed, the early results were overwhelmingly positive. HbA1c's tumbled, and importantly positive effects were seen at all starting points, with significant improvements being seen in those who hardly checked BG at all as well as those regularly checking 6-8 times every day.

And the results didn't begin to tail off after an initial positive surge either. As more data were added, the improvements were sustained and improved further.

Meanwhile the irrepressible, unstoppable force that is Dr Partha Kar was not for taking 'no' for an answer. If the evidence was sufficient for area A, why was it deemed insufficient for area B just down the road? Gentle pressure was applied with an NHS England behatted sledgehammer and a smile. Additionally everyone's second favourite Libre-prescribing-data-muncher Nick Cahm quickly became errant CCG's worst nightmare as he quietly and eloquently sifted through mountains of information to show how utterly nonsensical some of these local decisions were. And Diabetes UK weighed in to support and rally local people in their #fightforflash. The CCGs didn't stand a chance really.

And so today, the biggest of NHS bigwigs Simon Stevens joined in to announce that Libre will be available nationwide under RMOC guidance from April 2019:

“As the NHS prepares to put digital health and technology at the heart of our long term plan for the future, NHS England is taking important action so that regardless of where you live, if you’re a patient with Type 1 diabetes you can reap the benefits of this life improving technology.”

So who exactly will have access?
As far as I am aware this is the guidance (or something quite like it) that will be used to identify appropriate people with diabetes who will benefit from Freestyle Libre going forward:

It is recommended that Freestyle Libre® should only be used for people with Type 1 diabetes, aged four and above, attending specialist Type 1 care using multiple daily injections or insulin pump therapy, who have been assessed by the specialist clinician and deemed to meet one or more of the following:

1. Patients who undertake intensive monitoring >8 times daily
2. Those who meet the current NICE criteria for insulin pump therapy (HbA1c >8.5% (69.4mmol/mol) or disabling hypoglycemia as described in NICE TA151) where a successful trial of FreeStyle Libre® may avoid the need for pump therapy.
3. Those who have recently developed impaired awareness of hypoglycaemia. It is noted that for persistent hypoglycaemia unawareness, NICE recommend continuous glucose monitoring with alarms and Freestyle Libre does currently not have that function.
4. Frequent admissions (>2 per year) with DKA or hypoglycaemia.
5. Those who require third parties to carry out monitoring and where conventional blood testing is not possible. In addition, all patients (or carers) must be willing to undertake training in the use of Freestyle Libre® and commit to ongoing regular follow-up and monitoring (including remote follow-up where this is offered). Adjunct blood testing strips should be prescribed according to locally agreed best value guidelines with an expectation that demand/frequency of supply will be reduced.

It will be very interesting to see how this works in practice, and in particular whether this framework allows widespread adoption of Libre2 when that launches in the UK (at the same price as Libre1 apparently), which gives Libre users the option of alerts to prompt scanning when BG rises or falls to particular limits.

Roll on April!

Fight For Flash in Bristol - Diabetes UK

The last remaining island of 'NO!' in the South West

It was great to get together with 30 or so people with diabetes and DUK folks last night in Bristol to consider how to challenge the local behemoth BNSSG CCG (Bristol, North Somerset, South Gloucestershire) to rethink its current 'flat no' position on prescription of Freestyle Libre in the city and surrounds of Bristol.

The event was organised by local legend and all round good egg Sandra Tweddell, who works and campaigns tirelessly to improve the lives, opportunities and experiences of PWD. Sandra called on the wonderful folks from the South West office of Diabetes UK who set up and supported the event.

Bristol's expansive CCG extends to areas around the city, and depending on which of the maps I found online are the most up to date is either one of the last or absolutely the last CCG in the South West to approve Freestyle Libre for prescription. The CCG initially dismissed Libre despite strong support from local specialist diabetes Consultants and DSNs who submitted a very strong case document outlining the potential benefits and cost savings, and national position statements from RMOC, Diabetes UK and the Association of British Clinical Diabetologists.

It is slightly irritating that Bristol suggests 'lack of evidence' as one of their main reasons for denying access to Libre since it was only this year that Bristol finally stopped supplying homeopathic treatment on the NHS. One of the last areas in the country to stop funding a treatment for which there appears to be absolutely no robust scientific evidence at all. Their other, and cynically I might suggest more pressing reason, is a substantial budget deficit. An eyewatering £58 million black (or possibly red?) hole in their finances which is inevitably applying significant pressure on their committees to not pay for anything they absolutely don't have to. It is also striking that while Bristol has internationally recognised specialists and expertise in diabetes research, some of the outcomes for treatment leave a lot to be desired - our record for lower limb amputations ranks as one of the worst in the country, for example. 80% of the UK entire budget spent on diabetes goes on treating complications of living with diabetes. When it goes wrong, we are very expensive to treat.

Dividing into small groups to brainstorm.

The event attracted a wide variety of people, from those diagnosed 40+ years ago, to others with less than 12 months of pancreas impersonation under their belts. After a brief introduction by Diabetes UK's Stefan, we gathered in small groups to brainstorm ideas on 3 different questions: Why do we think the CCG is denying Freestyle Libre in the area? What could we do to convince the CCG to change their minds? and Who could help the campaign?

An absolute torrent of ideas followed. The CCG's position seems fairly entrenched at present and revolves around a perceived lack of evidence, very real financial constraints and perhaps a lack of understanding of the nature of diabetes and how a piece of monitoring technology genuinely can help. Encouragingly discussions inside the CCG are still ongoing (perhaps they are already feeling the pressure) and Diabetes UK is meeting with them later this month. We seem surrounded by people who can help to remove the postcode lottery - several of whom are in positions of significant influence. Everyone's second favourite NHS England Associate National Clinical Director for Diabetes, Partha Kar is making 'gloves off' murmerings where CCGs are resisting Libre and maintaining the postcode lottery, while Keith Vaz and the APPG are mustering Parliamentary support.

As Libre has rolled out across the country and clinicians have begun to share the transformation in quality of life and hard-data outcomes that Libre is bringing to their patients, there surely will come a point where these can no longer be dismissed as merely 'anecdotal'. We were keen to find out exactly what was 'lacking' about the evidence that the CCG had already reviewed, and specifically what sort of evidence they were looking for.

It was great to see the enthusiasm in the room. A real desire to challenge the decision, to clarify the potential benefits to the correct population of PWD (and the potential cost-savings that can result both in the short, medium and long terms). Added to which the annoucement of a CE mark for Abbott's shiny new Libre2 at EASD this week which offers the option of alerts and alarms that many Libre users have been wanting for so long. And the current news seems to be that Libre2 sensors and its reader will cost exactly the same as Libre1.

The meeting closed with commitments to keep up the pressure, write to MPs, involve the local press, liaise with local HCPs and specialists. There are plans to gather more information and case studies of the benefits & cost savings other areas are experiencing (particularly where these include substantial short-term savings eg for hypoglycaemia and DKA admissions). There was also a genuine desire to try to get in front of the CCG in person and/or as a group. I may have accidentally suggested going mob-handed to the CCG AGM or a similar public meeting dressed as Jelly Babies. A Flashmob, if you will.

Watch this space.

Libre available on NHS - big news and bigger caveats

Last night the rumour mill reached fever pitch as Non Disclosure Agreements were stretched to their very limits. And this morning the Twitterweb was a-buzz with the news that Abbott's Freestyle Libre flash glucose monitor is to become available on the NHS from 1st November*. JDRF issued this nifty press release and everyone's second-favourite cat-loving pyjama-wearing T1 ex-schoolteacher and all-round good egg, Adrian Long, was even glimpsed on Sky News in the early morning undertaking some top Libre punditry and sharing his love of 'Libs'.

* subject to local healthcare economic approval, CCG friendliness, moon in jupiter, blah blah blah.

Of course, no sooner had the long-awaited announcement been made than people began to get a bit sniffy about it, or unbelievably optimistic - depending on their frame of mind. Either Libres were about to be handed out to everyone immediately, whether they wanted them or not; or it was going to be a postcode lottery / the end of CGM funding / a complete disaster.

The official announcement from Abbott covers the whole of the UK, including Scotland, Wales and Northern Ireland. Freestyle Libre will be on the 'drug tariff'. Which means that it will be able to be prescribed, and reimbursed by the NHS.

BUT (and depending on your point of view this might be a small niggle, or a deal breaker), this is subject to local health economy approval.

It's an important step, but it might not be the end
I think I probably come down more on the side of 'wildly optimistic' about the announcement. But the 'local health economy' / local clinical commissioning group (CCG) approval thing is a bit of a worry. Even the JDRF announcement is rather cautious, stressing how important it is that the technology actually does end up reaching people. There may still be some work to do in your area to encourage the bean counters to play fair.

Balance of costs
The cost to the NHS of one Libre sensor is going to be £35. For people using intensive insulin therapy who might be using 8 or more finger stick test strips a day, the costs more or less balance out. Assuming an average-ish strip cost to the NHS of £14.50/pot it costs the NHS about £2.32 a day for 8 strips, versus £2.50/day for Libre sensors lasting 14 days where you can be checking 15, 20, 30 times a day or more. I am reminded of the real-world data that Abbott shared recently. In general, across all their users, the more people used Libre, the better their results. Fewer hypos, fewer highs, more time in range and a lower predicted HbA1c.

Even if you are not prepared to take on the heaving behemoth that is your local CCG and try to turn them around to the idea, I can certainly imagine myself having an interesting conversation with my GP (who, of course, runs their own business) about exchanging my strips for sensors for all the added benefits that gives me. It may be that as part of that negotiation I suggest paying for my own strips for DVLA and other occasional requirements. The cost analysis undertaken by NICE for T1 demonstrates that 8-10 strips a day can be cost effective (more BG information is associated with better BG outcomes and reduced complication risk). There may be niggling details and rules about 'local formulary', but it's certainly a conversation I'd be interested in having with my GP if the local CCG drag their heels (as they have been known to do in my area).

Getting your GP and/or hospital clinic on-side and banging the table for you is a good plan too. Speak to them and get them to apply pressure to the CCG to ensure readers and sensors are listed in the local formulary (which is located at Hogwarts just down the corridor from potions and defense against the dark arts).

But what about 'proper' CGM?
Some people have worried that all these funds getting diverted to Libre will spell the end of CGM funding. Personally I don't see that happening. CGM is currently only weakly recommended in national guidance for people who have significant problems with recurrent hypoglycaemia and have lost all or almost all of their hypo warning signs. The submissions to the NHS for approval were very clear that while Libre can really help some people reduce their exposure to hypoglycaemia with extra information, they are not a substitute for CGM alarms/sensor augmented pump for those with no awareness.

Diabetes UK have put together a position statement on Flash Glucose monitoring which I was pleased to be involved in, and which I think clarifies many of the issues about the Freestyle Libre. What it is good for and who can benefit from it. Thankfully it involves people with Type 1 and Type 2 diabetes - and actually I think should be applied to anyone with any of the many types of diabetes who are intensively using insulin. The recommendations on page 4 are very interesting.

Of course some people have been able to carefully negotiate the fiery hoops to secure full or partial NHS funding for CGM in their own particular case. I'm not sure I see the availability of Libre as affecting the clinical reasons which led to their funding being granted - unless they wanted to swap of course! Freestyle Libre is not a CGM, and does not issue alarms. If those alerts are important to you, then CGM is the better option. But for others the lack of 'alarm fatigue' is a positive benefit of Libre.

Onward and upward
I am really encouraged by this announcement. It's been a long time coming and a lot of work has been done behind the scenes to get to this point. Huge thanks to Lesley and Melissa at INPUT, the team at JDRF and Diabetes UK, and not forgetting Dr Partha Kar in getting us this far.

I am absolutely convinced that Freestyle Libre has a huge potential to help thousands of people who are quietly struggling with their diabetes management. Not in extreme enough need with frequent A&E visits to attract CGM funding, but just keeping going not knowing what they don't know about their BG fluctuations. I really hope the technology can be made available so that those quiet strugglers can go from doing OK to doing really well. Can reduce their long-term complication risk and improve their quality of life.

The Cost of a Chronic Illness - DBlog Week Day 2

Today is Day 2 of 2017's Diabetes Blog Week and today's topic is entitled The Cost of a Chronic Illness. For a wider perspective on this topic head over to the Day 2 link list.

I have read a lot of anguish, rage and despair from people living with diabetes in the US in recent months as insulin manufacturers increase prices again and again. The costs involved are simply eye watering - the latest 8% price hike by Eli Lilly earlier this month puts a single vial of Humalog at approximately £213. That's a 290% price increase over the last decade. I mean... really?!?.

Having read some powerful early posts from Aussie bloggers on today's topic (here, here and here) I know that diabetes can be an expensive business 'down under' too.

Not to mention the many, many parts of the world where access to insulin is even more difficult and costly. Where type 1 diabetes is still potentially a death sentence, rather than an irritating, but generally relatively manageable condition. I am so pleased that charities such as T1 International work so tirelessly to support people living with type 1 diabetes anywhere in the world where insulin and test strips are unaffordable, unavailable, or both.

I feel extraordinarily lucky to be living in the UK, where I can receive world-leading diabetes care free at the point of delivery.

Today's topic drew this famous National Health Service (NHS) quotation to mind:

“Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community”

Aneurin Bevan - founder of the NHS

What an amazing sentiment that is. How far removed from so much of what we see going on in the world today.

And it makes me realise why we in the UK are so proud of the NHS, and why we fight so hard to protect it, with all its frustrations, foibles and oddities.

There are a lot of people who are profoundly worried about the NHS in the UK at the moment. Funding is a real challenge, and has been squeezed and reduced in real terms for years. With an ageing population often with more and complex combinations of illness providing ever-increasing demand. Our current government (who look likely to be elected to a further term in a few weeks) seem perilously likely to be the sort of people who might change the NHS out of all recognition at any moment - breaking it up, selling parts of it off, introducing co-payment and/or insurance-based models under the guise of 'saving it'.

4 out of 5
My experience in helping to put together the NICE Guidelines for adults with type 1 diabetes in the UK gives me much food for thought here too. But unfortunately, not much in the way of answers of brilliant ideas. In the diabetes online community there is often frustration vented about the difficulties in accessing the latest shiny technology - which begins to sound like petulant toddler foot-stamping in comparison to the challenges faces in other places in the world. I am one of a relatively small number of people in the UK who self-fund continuous glucose sensors. I only manage to cover around half of the year, but it helps me enormously. My insulin pump, cannulas, test strips, insulin, appointments, blood tests, eye examinations, toe tickles and all the rest are fully funded by the NHS, either because they just are (imagine that!) or because I meet the NICE criteria which has demonstrated that they will be 'cost effective' for me. They will provide good use of NHS funds. The numbers have been crunched, the research examined, and the right ticks are in the right boxes.

This makes me feel simultaneously extremely lucky and, if I am honest, really quite guilty when I hear about the monetary investment you, dear reader, may be making somewhere else in the world. I know how much I wince when I buy a couple of sensors.

But these ongoing every-day 'maintenance' costs of living with Type 1 to the NHS are only the tip of the iceberg. A mere drop in the storming, swirling financial ocean.

One uncomfortable fact is that of the entire budget spent on diabetes in the UK fully 80% of it goes on the other stuff that we'd rather not think about. The costs of medication, appointments, pump and consumables only make up a trifling £1 out of every £5 the NHS spends on diabetes. The really, REALLY expensive stuff, is when diabetes nasties come knocking at the door. When people develop problems with eyes, nerves, kidneys, feet or heart. Admissions, surgery, follow-up care. And if the financial cost of those things were not bad enough - they also come with a huge human cost too.

And modern medicine is getting so good at treating type 1 diabetes these days that our life expectancy is closing on people with functioning pancreases. Giving us all the more time to potentially develop the long-term complications that cost so much.

So it is down to us, who live with long term condition like diabetes in the UK to honour the investment the NHS so freely makes in us. To do everything in our power to live well with diabetes and avoid complications if we possibly can. To take up the offered (FREE!) education courses to improve our self-management. To attend our annual screening appointments which cost us nothing but a few minutes of our time. To learn as much as we can, and to keep chipping away at our results to try to improve our numbers where we can. To aim to avoid complications if it is within our power to do so.

To live long, healthy lives alongside type 1 diabetes.

#talkt1 - Brainstorming a new model of care for T1 diabetes

Bright and early on Saturday morning I caught the train to sunny Southampton where I had been invited to attend '#talkt1', and event organised by everyone's second-favourite rabble-rousing diabetologist and all-round live wire Partha Kar. It was a real honour to have been invited and the attendees to the event were an extraordinary who's who of passionate, committed T1 specialists, consultants and paediatrics, commissioners, DSNs, plus various NHS big-wigs such as Jonathan Valabhji and Diabetes UK's CEO, Chris Askew.

The majority of the party had gathered the evening before, for some presentations, talk of Vanguards and 5 year forward and time to think and talk together. This was not some back-slapping jolly though. These amazing people had given up their weekends to take a tough look at how type 1 diabetes care is delivered in the UK and to see if they couldn't begin to rethink it. One chilling statistic from Pratik Choudhary's presentation was recounted on Saturday morning:

‘Current practice kills at least 30% more people by the age of 50 than best practice should achieve’

Saturday morning began with some patient stories. Kev Winchcombe gave a moving account of the diagnosis of his daughter, and the huge journey they have been on ever since (yes that's right, I'm using the 'J' word - deal with it). Laura (ninjabetic) spoke of her initial struggles, lack of education (100 units a day and no instruction about balancing that with carbs!) and how connecting with others on Social Media has made such a difference to her self-care. Jens Birkenheim spoke of his frustration with not being able to find the sort of care he needed - or even where to start looking - which led him to begin setting up DCareFinder, a website that allows you to search for diabetes services near where you live. It was then my turn to talk about my experiences as a lay member of the Guideline Development Group for the NICE T1 Guidelines, how I came to be involved and whether I thought they helped me as a patient.

It was interesting to hear the same themes coming out again and again in each of these patient stories. The need for education, right from the start and as an ongoing part of living with T1D. The variety of care experiences in the UK, sometimes exceptional, other times disastrous. The value of using technology, digital-connectivity and peer-interaction as tools in our daily dance with T1.

It was then time for some thoughts from the diabetes 'legends' - Professor Simon Heller and Dr Fiona Campbell who spoke about adult and paediatric care respectively. One quote from Prof Heller particularly stood out to me. He said, "We don't often tell our patients this, but there is no condition which demands more of the individual than type 1 diabetes".

There was a lot of tough talk. A genuine sense that these people felt they could do better - and wanted to make that happen.

In the afternoon the room split into 4 'teams' each given a scenario of a hospital trust/healthcare setting and pot of cash. They were then asked to see what they could come up with (in a matter of just a few hours) as a new model of care for type 1 diabetes. "If we were starting from scratch," Partha said as he introduced the game, "I think we can all be pretty sure that we wouldn't end up where we are". Us patient-types were free to roam around from table to table and stick out oar in. Giving feedback as to whether we liked the ideas being floated. After a break for lunch, there was just enough time to draw the ideas together before they were to be presented to a guest panel of 'judges', including two CCG Commissioners and Roz Davies as a patient representative.

I'm not quite sure what Partha expected to get out of this scrap-of-time-workshop, but there were a number of very interesting ideas floating around as the 4 different models were presented. It was fascinating that no one really based their idea on needing a stack more money. Most of the thoughts were priced loosely within the specified budgets, and it seemed that these may have been thoughts that people had been musing on for some time. I didn't take any notes so can't really recount them in detail, but here are a few things which caught my attention at the time.

• The idea of 'front loading' finances. Implementing additional education and support up-front with the money that you would expect to spend later on acute admissions or complications that can be avoided.
• Identifying people who are stuggling not only by HbA1c and/or admissions, but also on their level of 'diabetes distress'
• The importance of education delivered by people specifically trained in T1D
• The potential of 'community hubs', making it easier for people to access care near where they live, as often as they need it
• The importance of psychological support - as Dr Fiona Campbell put it "Psychologists will never sit idle - so much is discovered by universal screening. You don't know what you don't know"
• The potential of technology - Skype consultations, remote/digital clinics, regular data-upload and review, email and *gasp* seamless sharing of information between GP and hospital clinics
• The huge potential of peer support as part of a new model of care
• A modular education approach - Diabetes seen as a journey through life with various milestones. People have different needs/aspirations and will be ready to access education at different times - the ability to dip in and out of primary and secondary care with varying frequency
• That people are different, and that approaches need to be tailored to better support individuals

It was a really inspiring day. You got the feeling there were some real sparks flying. That if anyone could begin to stir up the current state of T1 care in the UK, then this would be a pretty good starting line-up. It will be interesting to see what comes out of it in the coming months and years. Huge thanks and much respect to Partha Kar for his energy and commitment to improving things for us pancreatically challenged lot.

If you want other perspectives on the day you can also read blogs by Partha, Roz, Laura and Kev.

Disclaimer. Very kindly, my train ticket was paid for and the lovely Kev W gave me a lift to the venue. Lunch was laid on, but all of us patient speakers gave their time for the privilege of being involved in such an amazing day.

New NICE Guidelines for Type 1 Diabetes Published (at last!)

As some of you may know, over the last three years (THREE YEARS??!?) I have been working with a wonderful group of fiercely clever and passionate people as one of two 'patient representatives' on the NICE 'Guideline Development Group' which was revising and updating the NICE Guidelines for type 1 diabetes in adults. Expert consultants, eminent physicians, nurses, pharmacists, GPs, educators, editors, along with a host of other specialists including researchers and health economists who gathered and organised an almost unimaginable quantity of research data for the group to filter through and consider.

It has been a huge privilege to work with them all, not least Professor Amiel, the chair of the group, who is a complete inspiration and quite the nicest person you could meet. We have not been permitted to mention anything much connected with the discussions until publication, but at last, today, the guideline launches here: ‘Type 1 diabetes in adults: diagnosis and management'.

Hooray!

If you have been living in a cave for the last 16 years and have never heard of the National Institute for Health and Care Excellence (NICE), they are an independent body working as part of the Department of Health who publish guidance on all manner of healthcare topics which aims to set the 'gold standard' of evidence-based care, balancing clinical outcomes, patient preference and quality of life against the cold hard reality of NHS budgets (ie Yes! You can have something expensive... but only if published research shows it's reeeeeally good for most people).

As a patient, I *love* the fact that I can have a weighty, official, authoritative document that describes what has been shown to be the very best in diabetes care. It gives me something to consult to measure my own experience in clinic, and the right kind of pointy questions to ask if I think I should be getting something that isn't being offered. Plus if I think something should be available that isn't, the documentation is so comprehensive that (if I wanted to) I can dig down into the 'linking evidence to recommendations' section to unpick the reseach and discussions that underpinned the recommendations.

NICE seems to get a hard time in the press off and on (either for denying treatment, or for recommending it) and is frequently accused of bias or an almost corrupt collusion with the pharmaceutical industry. I have to say this could not be further from my experience of the guideline development process. Each meeting included a new declaration of 'conflict of interest' and anyone with a conflict, financial or otherwise, however minor, was not permitted to contribute to the discussion or was asked to leave the meeting entirely.

I am very proud to have been part of the process, and believe that this updated guideline, if fully implemented has has enormous potential to improve the lives of adults living with type 1 diabetes in the UK.

Here are a few things I'm really pleased made it into the final version:

Structured education

Offer all adults with type 1 diabetes a structured education programme of proven benefit, for example the DAFNE (dose-adjustment for normal eating) programme. Offer this programme 6–12 months after diagnosis.

If a structured education programme has not been undertaken by an adult with type 1 diabetes by 12 months after diagnosis, offer it at any time that is clinically appropriate and suitable for the person, regardless of duration of type 1 diabetes.

My feelings about the lack of structured education formed no small part of my journey toward joining this NICE committee. Carb counting, dose adjustment, correction factors, basal testing, guidance about exercise, alcohol and sick day rules. How can people be expected to make a decent go at managing their type 1 diabetes without these skills? And yet the number of people who have ever attended such a course is pitifully small. Unless I'm mis-remembering it's something like 6.5%. Let's hope that during the life of this guideline that changes significantly.

Access to test strips

Support adults with type 1 diabetes to test at least 4 times a day, and up to 10 times a day if any of the following apply:

• the desired target for blood glucose control, measured by HbA1c level (see recommendation 1.6.6), is not achieved
• the frequency of hypoglycaemic episodes increases
• there is a legal requirement to do so (such as before driving, in line with the Driver and Vehicle Licensing Agency [DVLA] At a glance guide to the current medical standards of fitness to drive)
• during periods of illness
• before, during and after sport
• when planning pregnancy, during pregnancy and while breastfeeding (see the NICE guideline on diabetes in pregnancy)
• if there is a need to know blood glucose levels more than 4 times a day for other reasons (for example, impaired awareness of hypoglycaemia, high-risk activities).

'Proper' testing frequencies of up to 10x a day (and making use of the results) shown to be more effective AND cost-effective. No more shocked looks permitted from non-specialist Drs or nurses suggesting a couple of times a week should be fine.

HbA1c Target

Support adults with type 1 diabetes to aim for a target HbA1c level of 48 mmol/mol (6.5%) or lower, to minimise the risk of long-term vascular complications.

Agree an individualised HbA1c target with each adult with type 1 diabetes, taking into account factors such as the person’s daily activities, aspirations, likelihood of complications, comorbidities, occupation and history of hypoglycaemia.

I've written about this before. Personally, as a patient, I am really pleased with the balance between these recommendations. Don't tell me to be happy with an A1c approaching 8% if there is real evidence that lower is better to guard against long-term complications. Don't tell people who have no problematic hypoglycaemia that their A1c is 'too low' because it's in the 6s (can't get used to the new numbers yet, sorry!). On the flip side, treat me as an individual, don't label me as a failure because you have a magic number in your head that I am working toward, but I'm not there yet.

Not exactly 'CGM for all', but...

Consider real-time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:

• More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.
• Complete loss of awareness of hypoglycaemia.
• Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.
• Extreme fear of hypoglycaemia.
• Hyperglycaemia (HbA1c level of 75 mmol/litre [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real-time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more.

'Consider' is NICEspeak for a much weaker recommendation. It should be on the table, but it's not for everyone. The evidence for effectiveness of CGM was just not compelling enough to do anything else at it's current eye-watering pricetag. To be honest I was shocked at how weak it was, given the experience of people I know who self-fund CGM. Continuous Glucose Monitoring it seems just doesn't do well enough in Randomised Controlled Trials. But at least, here, it *might* be available on the NHS to the people who really need it.

And finally
It was great to see bi-modal (mixed) insulins being given the heave-ho, unless people really wanted to use them. From now on people should be able to start off on a proper flexible MDI regimen from the outset, along with some good education and support.

It was also really heartening to see how NICE reacted to the subject of language. The editors were updating the old recommendations for clarity and new styling (for example 'adult with type 1 diabetes' rather than 'diabetic' or 'patient'). I raised the question of the word control which is a difficult term for some people. Personally I cannot 'control' my diabetes - I do not have the ability to affect all the variables. At best I can limit some, and try to react to, or work around the others. I don't control my diabetes, I manage it. Because of the timing of the discussion, it was not possible given the time-restrictions to change the terminology used in the full guideline (though discussions will be had within NICE for future versions). I was very pleased though that for the 'Information for the Public' version, the phrase 'diabetes control' has been replaced.

What do you think? Will the new NICE guideline make any difference to you? Were you even aware that there was one to cover type 1 diabetes? Let me know in the comments below.

Change the world - DBlog Week Day 1

Thanks to Karen Graffeo this week is the 5th annual Diabetes Blog Week.

Today's topic is 'Change the world'.
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Hmmmm... Well I'd usually bang on about the power of peer support and the DOC, but since my last post was about that very thing I've decided to take this topic as more of a fantasy 'what if anything were possible' type thing.

So if it's not a cure and diabetes is continuing and if I could change anything what would I choose..?

I wish there was more honesty and fairness. Specifically when it comes to medical research and product development.

Perhaps I have got this wrong. Maybe I'm just being too jaded and cynical. I am absolutely sure that most people who undertake research are paragons of honesty and integrity, but I'm afraid I do worry about the impartiality of some research studies into new treatments which are (inevitably) funded by the companies who have invested thousands in research and development and now need to turn a profit. Small, commonplace things like studies having a 'run-in' period where carefully screened participants get to try the therapy before the trial actually starts so that people who don't get on with it don't take part. Hey-presto, when the trial data are collected - almost no drop-outs and hardly any side effects reported. Results being extrapolated and amplified with 'mathematically modelled' outcomes. If x changes to y then the model suggests that umpty bazillion people will be 50% better off (rather than simply counting the number of events that did or didn't actually happen in the sample population). Data meta-analysed to within an inch of its life and suddenly the conclusions reached 12 months ago that there was not very much benefit, get republished with a handful of results added to suddenly show something startlingly different.

The problem for me is that it actually takes quite a lot of effort to go into the detail. Part of my work with NICE as a patient representative on the Type 1 Adults Guideline Development Group has involved reading and reviewing many more research papers and results than I would ever have normally. It soon became clear to me that behind the confident assertions of the 'conclusions' by the authors of some papers there's a sort of hollow flimsiness to the whole thing. And in these days of 'evidence based' medicine this gives me more than a little uneasiness. Some major decisions are taken about what is or isn't an appropriate way of treating people are taken on the basis of medical research results some of which - to my inexperienced eye - looks rather less than rock solid. But who does that? NICE are pretty good at trying to filter though the mire most of the time, but so many decision makers, politicians and journalists seem only interested in the headline.

Now I'm not quite in the 'the whole thing is a complete Big Pharma Conspiracy' camp, but I do wish we lived in a world where I didn't have to worry about the motivations and financial background to all this. Where I didn't have to look for the agenda behind the research. Where new treatments and therapies and approaches were developed, adopted or dropped on the basis of what actually worked for people rather than what made the most money for the companies involved.

I realise that I am extaordinarily lucky to live in a country with an organisation as amazing as the NHS to underpin my healthcare, but there is only so much money to go around and I would love it if every single penny of that was being spent in the very best ways on the most effective treatments, interventions and (shock horror!) non-drug based methods like, er, you know, type 2s doing rather better when they eat fewer carbs.

Oh... and if I ruled the world Bakewell Tart would have absolutely no effect on blood glucose levels too.

Nice new project

Just back from a short break in Cornwall. Lots of sea, sand and set changes (more on that later).

While away I had some slightly surprising and quite exciting news. A few weeks ago I caught sight of a thread on one of the forums I frequent that NICE (the National Institute for Clinical Excellence) were seeking patient/lay members to join the Guideline Development Groups for some of the diabetes guidelines, including Clinical Guideline CG15, Type 1 Diabetes in Adults.

Now I have good reason to like NICE very much. Because of the way the current guidelines are set out and worded I qualified for an insulin pump despite having a pretty decent A1c (because keeping it that way meant I lived my life constantly a little on edge about the possibility of a hypo). NICE guidelines lay down what is currently thought to be the best (and/or most cost-effective) approach in diabetes treatment. At the very least they give you an 'official' version of the sort of care you should expect that you can wave in front of any healthcare professional who still wants you to mash up bits of dead animals and drink your own wee to test for sweetness.

Back when I had my soapbox moment about the lack of carb counting education experienced by some people I reflected that the NICE guidelines were good, but perhaps a left just a little too much room for manoevre and were not up for review for some years. Here was my chance to put my money where my mouth was and get involved in the review process myself. It's a 2 year project with meetings approximately every 6-10 weeks. It involves quite a bit of reading and sifting of research papers in preparation for the meetings. There's a small payment to cover the cost of attending the meetings and travel expenses are paid.

So I filled in the application form, sent it off and waited. The week before last I took a conference call for the briefest of informal interviews and a few days ago I had an email to say that I had been appointed to the Guideline Development Group as one of two patient members. Yay!

Over the past few years I have hugely enjoyed getting to know lots of people with diabetes through this blog, various forums, Twitter, Facebook and all that. People whose experiences I hope to be able to feed into the review process along with my own.

I won't be able to share the details of any of the discussions before the guideline is published, but may ask you, dear reader, for your input/experiences in advance of some of the meetings to be able to bring wider view to the table.

Exciting times!

Top notch transition to a pump : QiC Awards 2012 Guest post

I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). The last post shares the outstanding experience I've had moving to an insulin pump.

On a slightly brighter note I thought I would share my absolutely excellent experience of moving from MDI (multiple daily injections) to Insulin Pump therapy. The clinic I attend is quite pro-pump and the idea was first mentioned to me some years ago as a possible solution to my concerns over hypoglycaemia. I have never had a problem with severe episodes, but the low-level dips have always been a little too frequent and in more recent years I had become slightly concerned that my warning signs might be weakening.

When an insulin pump was first suggested, many years ago, I was intrigued as to how (if a person was still going to be making similar errors in carb counting, for example) the transformation in control came about. Unfortunately, the consultant who was advocating a pump could not clearly articulate ‘how’ it improved things – just that it did. Sadly, this was not really enough for me. Like almost everyone considering a pump I had an instinctive and fairly profound unease about being attached to something 24 hours a day, 365 days a year and I remained firmly ‘pump averse’ for several years.

It was only after perhaps two years of renewed effort in gaining real control over my diabetes, while at the same time coming into contact with a number of pump users online that I began to understand how and why pump therapy worked. At the same time though, I became aware of the ‘postcode lottery’ that seems to be part and parcel of getting pump therapy funding in the UK. I wondered if I had perhaps missed my chance, or if it would take the three or four years of struggle that others experience.

Having pushed my MDI to the limits, learning an awful lot about how my diabetes works, improving my HbA1c and losing a lot of low-level hypos into the bargain I realised that however good it got it still wasn’t going to be good enough. I decided to investigate the option of a pump at my annual review in September. I had a good two-way conversation with a Registrar who agreed that many of the challenges I continued to face would be better tackled with an insulin pump.

She booked me an appointment with the Pump Specialist Diabetes Nurse the following week. Although I hadn’t officially done a course on carb counting and dose adjustment it was agreed that I knew enough for this not to present a problem. The DSN put my case to the pump clinic Consultant, who agreed funding with the PCT and I started on an insulin pump a few weeks later.

I cannot imagine a better experience. I was treated as an individual throughout and my particular needs and circumstances were taken into account at every stage. Not only that, but the transition was handled excellently – with lots of care and attention, frequent phone calls and follow-up during those tricky early days.

When things go well it is hard to imagine a better healthcare system than the NHS.

All too familiar? : QiC Awards 2012 Guest post

I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). This second post does a bit of moaning about decentralised care.

Familiarity breeds contempt they say, and I suppose that is true of those with chronic conditions. We have attended so many appointments, check-ups and dealt with so many prescription requests over the years that we can become quickly frustrated by any perceived administrative inefficiency.

We are already devoting quite a considerable amount of time and effort to this ‘playing at being a pancreas’ project and have little enthusiasm for repeat appointments and any apparent lack of communication between different parts of our care team. For example, I needed to make some changes to my repeat prescription recently as suggested by the DSN at the hospital. It took at least four attempts to get it right at my surgery. This is about average. I’m not sure how I could have made the requests any clearer. In the end it took two handwritten notes, one typewritten, one from the DSN herself and three visits to the GP’s reception.

At no point was I called or emailed with a query or to request any clarification, I just had to keep going back and asking for the same thing over and over until the repeat prescription form eventually came out right. And this is a surgery that I know handles their aspects of my care brilliantly. Compared to other people’s experiences that I read on various forums, I know I am very lucky.

There seems to be another push for the decentralisation of care at the moment. I can remember when what I used to refer to as my 30,000-Jab Service (annual diabetic review) took place with two visits. I would get some bloods taken a week or two before my appointment, then go along to clinic and spend the inevitable hour waiting to be seen before being variously poked and prodded until everyone was satisfied that I was OK to be released for another 12 months. All in all, including the blood tests, it probably took about two or three hours.

Change 1: The arrival of eye screening units. The traditional scary-pupil-enlargement-and-bright-light-combo was taken out of the review and began to involve snazzy photography by a mobile unit at the GP surgery rather than being peered at by someone clutching an ophthalmoscope and holding their breath. Not a bad change – but it did involve an extra appointment and thus a bit more waiting room drudgery.

Change 2: The next thing that happened was that a practice nurse and GP at my surgery went on a short course, and they began to run a diabetes clinic. Since I’m on their books I was not-very-gently encouraged to attend (I always assumed there was a financial incentive). Up to that point my care had always been at the hospital, and for a year or two I endured double appointment ‘fun’. Twice the appointments, twice the blood tests, twice the reviews, more hours spent in waiting rooms, more time away from work – no actual benefit.

Since the surgery was not taking no for an answer I ended up signing myself off at the hospital and kept going to my GPs for a few years. This was all well and good for some things, but after drifting for a while with a not-disastrous-but-not-great HbA1c I had a peculiar hypo one night that shook me up a bit and ended up with a precautionary, though looking back largely unnecessary, trip to A&E.

Some of the long-standing frustrations and/or peculiarities in the micro-management of T1 became more pressing. But when I went for an appointment first with the practice nurse, then with the practice GP ‘with interest’ both looked a little rabbit-in-the-headlights when I started asking pointy questions about changing insulins. I think the GP said ‘It’s a bit out of my league really’. So I was referred back to the hospital again. Approximately 18 months later I am going through that same loop again – ‘review overdue’ is appearing on my repeat prescription request form. I’m booked in to the GP clinic again. Even though I had an ‘annual’ review six months ago.

Now that doesn’t sound too troublesome as a story – but coming from a point of feeling ‘well cared for’ for about 10 or 15 years with one or two appointments a year the number of appointments has risen exponentially. And often the appointments can be 2 minute affairs just to say that someone doesn’t know and I’d have to go and see someone else.

I am extremely lucky in that my working hours are quite flexible, but in previous jobs this would have been extremely difficult to manage. I can understand the logic in trying to free up time in hospitals by getting some of the checks and tests (weight, blood pressure, eye squinting, toe tickling and so on) done in a local GP surgery, but the problem seems to be that the various parts of the now widespread team are not sharing their bits of information effectively.

Additionally if you break down one appointment into four or five different slices it becomes a lot more troublesome and time consuming for the patient. From the surgery point of view I can see the QoF* incentive to get good results from all the people with diabetes on your books – after all we are expensive to keep – but surely a result is a result? A test and/or notes taken at hospital clinic should not need to be repeated a month or two later at the surgery unless there is a compelling clinical reason for doing so.

*The Quality and Outcomes Framework allocates 'points' for GP surgeries where patients with long-term conditions are meeting certain criteria and/or have all the relevant records up to date. The points then equate to additional budget for the surgery.

My other full-time job : QiC Awards 2012 Guest post

I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). This first post considers some issues that can arise for HCPs when dealing with people who live with a condition day-in day-out.

I should perhaps begin by saying that during the 20 odd years that I have had Type 1 diabetes I have had what I consider to be excellent care from pretty much every DSN, registrar, consultant, dietician, phlebotomist and GP I have come across. I am also aware, from reading accounts from people with diabetes elsewhere in the world, that the UK is a pretty darned good place to live if you happen to have a wonky pancreas. Now anyone who has spent any time treating people with diabetes will surely know them to be the most even-tempered, uncomplaining and obedient of patients(!) and I’ve been invited to reflect on my experiences from ‘the other side of the desk’.

Diabetes is a complex and contradictory condition to be diagnosed with. Long after the initial shock has worn off, patients are regularly assailed by conflicting emotional responses: Having diabetes doesn’t have to stop me from doing anything I want to... Diabetes stops me doing anything I want to... I can eat anything I want as long as I dose for it correctly... There is absolutely nothing that I can eat without causing complete chaos in my levels... I can do this! I just can’t do this any more! With diabetes it’s possible to experience any of these feelings in quick succession – or quite possibly several all at the same time.

What is worse for healthcare professionals, of course, is that diabetes is insanely personal. In the Diabetic Online Community (all those diabetes blogs and forums that you probably don’t read) there is a well-worn phrase that stubbornly refuses to die out from over-use – Your Diabetes May Vary.

One-size-fits-all this isn’t. Advice you might give to one patient that would work perfectly, might be a complete disaster to the next. Not only that but we diabetics, especially those of us with Type 1 tend to hang around for quite a while these days. If diabetes was my job, I’d be edging toward a carriage clock and time off for good behaviour by now.

This poses two main problems for HCPs I think. First is the assumption that we’ve been told things before. Second is the assumption that we don’t have a clue what we are doing. The first assumption could leave a patient floundering for years without a basic understanding various diabetes management approaches, dose adjustment or carb counting for example, simply because they were not in vogue when they were diagnosed. These patients then don’t get updated later as it is assumed by fresh faced perky young medics that they must know all this already. The second assumption could see a steel shutter slam down during a conversation if a suggestion is made that ‘If you are high you need to take a bit more insulin’ to a person who has been carefully tweaking their own doses for years.

In order to control my diabetes to my satisfaction I have to think about it more or less continually. It’s the first thing I think about when I wake up, and the last thing I attend to before sleep. There’s not a morsel of food that I’ve eaten in over 20 years that was not first considered in relation to its likely effect on my blood glucose levels. Any appreciable change in level of activity even just popping round the shops needs a bit of thought and a little forward planning. Even changes in the weather have to be watched. When I’m managing my diabetes well, it’s pretty much a full time occupation – the team I see get to think about it for about twenty minutes once or twice a year.

Beating Diabetes... anyone fancy a cure?

I'm just coming to the point in my life where I've lived longer with diabetes than I lived without it. Ever since diagnosis I have read about, or been told about exciting research which could have profound effects on those living with diabetes. I have witnessed the release and gradual acceptance of amazing new technologies and treatment options which make diabetes more controllable than ever before. Every year I've heard of breakthroughs that bring that elusive prevention or cure one step closer.

But anyone who has more than a passing experience of this condition will know that it can be an infuriatingly complex and difficult business. Most reports of dramatic research developments usually end with caveats about 'very exciting, but early days' and 'further research' being needed. Typically the timeline suggested before things come to fruition is 10 years. I don't know why they pick that number, but they always seem to. Long enough, perhaps, for everyone to have forgotten the promise.

So you might think by now I'd be all cynical and downhearted? Nope.

Before diagnosis I had never really had much to do with the medical profession. I'd not broken any limbs as a child, or needed to go to the doctor much. I had a brief stay in hospital when I was around 8 after being hit by a car crossing a road, but on the whole medics, hospitals and GPs weren't really in my frame of reference. Suddenly, in my early 20s there I was. Right in the middle of multiple appointments and practitioners, a hospital stay, armfuls of blood tests and with an on-going connection to all these people stretching out in front of me. Not only that but I became very aware of others diligently working away in quiet labs prodding and poking at diabetes, turning it over and over with a stick and trying to figure out how to make it easier to live with, and if possible disappear completely.

There has never been a better time in history to be a diabetic (and given the numbers of us around, that's quite a good thing). And tomorrow, or the day after, or the day after that, someone, somewhere will have a thought, or observe some happy accident, then test it and tweak it and suddenly BAM!

No more diabetes. Ever.

That would be great, right? If you live with D, I'm pretty sure you'd like that. Quite a bit. And the fact that there were lots of thoughts and ideas earlier that didn't come to anything will not be important. The dead ends and diversions will be of no consequence because the beast will be slain, or the perfect treatment option to control it will be right there in our hands. If not 'no more diabetes', I'll settle for 'no more diabetic complications'.

If only we could speed the process. If only we could, in our own small way, play a part in that amazing story.

Well we can.

I was contacted a week or so ago by someone who asked if I could raise the profile of a campaign to help beat diabetes. The NHS's National Institute for Health Research 'Diabetes Research Network' has launched the Help Diabeates campaign to encourage people to get involved in the search for a cure or better treatment for diabetes. Because of the nature of the teaching hospital I attend for my diabetes care I have been able to take part in various research projects in the past. But this, I think, is part of the difficulty... Any researcher with a brilliant new idea to try needs to be able to make observations and test things with suitable candidates to develop their knowledge, explore their idea and push it further. If they are attached to a clinic they might be able to ask around and see if there any volunteers, but I suspect they are going to be scratching around with only a handful of people who fit the criteria.

And if they can't get their research done we can't get our cure.

In simple terms the Help Diabeates campaign offers you an easy way of offering to be involved at some point, and only if you want to for any particular project. It's a way of throwing the research net a little wider. You add your name to the database, they ask you a handful of questions. Then if there's a research project that might benefit from your involvement you get contacted and are given the chance to take part. Even if you decide you want to and then change your mind, you can back out at any stage.

What are you waiting for?

Find out more about Help Diabeates here, then sign up to take part here.

And if you dont live in the UK? Well just look around. In a lab somewhere in your country there's a clinical trial with your name on it.

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Diabetes bashing on Channel 4 News

UK diabetes forums erupted in indignation yesterday following a report on Channel 4 news.

Channel 4 News - Diabetes: the insulin investigation
While on the subject of health, I should mention that later in the programme we have a completely sensational film about diabetes and the high cost of a new form of insulin.
Diabetes already costs the NHS £9bn a year - our investigation has discovered that these new insulins - now used by millions in the UK - only offer minor benefits compared to older versions. Meanwhile they are costing us tens of millions extra annually.

The film exposes what some see as an attempt by big pharmaceuticals to transfer the world's diabetes sufferers onto an insulin which has only modest advantages for most patients - but is very profitable for the companies who make it.

I didn't see the report when it aired but thanks to the wonder of the interweb I was able to watch it today. This put me in the strange position of beginning to work out what I felt about it before I'd seen it.

Initially I wasn't sure what everyone was so upset about. But then I watched it.

The real shame is that the actual story is quite interesting. I didn't realise, for example, that there were more type 2's using insulin than type 1's (at least this is what was inferred in the report). I suppose it is possible since the number of type 2's is so much higher that even the relatively small percentage of those who use insulin therapy do indeed outnumber the total number of type 1's (who all use insulin), but it was still a surprise.

For type 2's using insulin the report suggests that many (most?) patients would get very similar results using older human insulin formulations as they do with the newer (and significantly more expensive) analogues. It was not made clear how this had been researched. If you watched very carefully, and if you already know a great deal about the subject matter you might just about have been able to glean that none of this is the fault, or choice of the patients. That it is the Big Pharma reps who stroll around hopitals wooing DSNs and diabetes clinics so that analogues become the default choice. That those specialist nurses are often far less familiar with the older formulations and do not feel confident in putting patients on them. There's no point in keeping patients, particularly diabetics, on older ineffective therapies because the short-term savings will be far outweighed by the cost in treating the diabetic complications that will follow. Similarly there is no need to prescribe insulins which cost 2 or 3 times as much if a more cost effective medicine provides the same therapeutic benefit. Which variety of insulin a patient uses should be a decided by clinical need, not some lazy default choice and certainly not purely on the encouragement of a Big Pharma rep!

Sadly, I suspect almost no one understood this from the report. Especially if they have heard or read pretty much anything else about diabetes in the last few years in the media. Because there is a very real, very big problem with the way matters concerning diabetes is reported in this country. In my experience the thrust of pretty much every article is in one of two directions.

1. Diabetes is very, very expensive to treat and it is costing the NHS (and that means you dear reader) an absolute arm and a leg in taxes.
2. Diabetes is caused by eating too much sugar and/or fat. People who get it are fat, lazy and only have themselves to blame. Now see point 1.
   

Occasionally the journos might throw in some other snippet about it being 'cured' by eating your own earwax or something similarly ludicrous, but by and large it seems to be either 1 or 2 or a combination of the two. And the more exaggerated and terrible they can make the story the better.

So it is into this terribly mis-informed world that yesterday's news report lands. Did they take the opportunity to explain some of the complexities of the condition? No. Did they carefully explain which of the many types of diabetes were affected? Not really. The focus was unnecessary cost and unless you know different already you would assume that the problem lies with every diabetic. Indeed many outraged comments from diabetics suggest that even those 'in the know' were mightily confused.

It didn't help that they began with a headline figure of the £9 billion. That is a whole lot of NHS money, and it goes on treating diabetes in the UK. Having got the really juicy, scarily big number out there they then threw about lots of other costs and figures. £300 million a year on insulin, and later £250 million potential saving. What? You could save almost the entire cost? Ah no! Sorry, you weren't listening carefully... the £250 million was over 5 years. So that's £50 million a year. Still not to be sniffed at, but sensationalist journalism and quite misleading.

Part of the problem, of course is that nothing about diabetes is easy.

The media don't understand it. They don't feel the need to understand it. It's a Big Problem and rather than take the trouble to research it properly they can stick with what they know (see points 1 and 2 above).

It seems to me that diabetes is an umbrella term for perhaps dozens of different disorders - Type 1, LADA, MODY, Gestational, Double and of course Type 2 the media's favourite Big Target. Some types quite are closely related, others very, very different and I've read that Type 2 is really just another umbrella term for a very large number of sub-types. The reporting, though, only ever talks about 'diabetes' as if it were some sort of indivisible whole. There was a passing mention of type 2 last night (about halfway through) but no explanation as to what that meant, or how and when a person with type 2 might be put on insulin. There was no clear explanation given about when the more expensive insulins are particularly effective and well worth the extra cost. Again and again different talking heads just repeated that 'the old stuff is just as good, and it's so much cheaper!'. Particularly misleading was the repeated blurry white-room shot (sourced from an image library by the look of it) with several young twentysomethings injecting into their abdomens. A group of people who seemed pretty much your archetypal type 1's to me, illustrating a report about insulin therapy in type 2.

The tragedy is that, from my type 1 perspective there seems to be a significant problem with the way type 2 diabetes is treated in the UK. Many of the type 2's in question will now be using insulin because their diabetes has progressed through treatment by diet and exercise, then oral medications and finally to insulin. They will probably have been refused prescriptions for blood glucose strips by their GP (even though the NICE guidelines mentioned in the report support SMBG - Self Monitoring of Blood Glucose in motivated individuals). Many will have been told they don't need to test, an annual HbA1c is enough. Without the ability to monitor what happens to their blood glucose levels when they follow the dietary advice they are given they will not have known how catastrophic it can be. In it's most extreme form "eat lots of starchy carbs with every meal" I have heard accounts from type 2's who actually began to eat more carbohydrate after diagnosis believing it will keep them healthy. More carbohydrate = higher blood glucose = more damage and excess glucose stored as fat.

Now if the £50 million a year saving was reinvested in test strips for type 2's. And proper education was put in place to help individuals establish the level and types of carbohydrate that their bodies can tolerate (because every diabetic is different), perhaps the 'inevitable' progression towards insulin, for some at least would be slowed. Maybe for others it would be reversed. I have heard of many type 2 diabetics who have moderated their carbohydrate intake by self-funded SMBG and have been able to reduce and then stop oral meds altogether. And at least one who appears to have recovered normal pancreatic function almost entirely.

Now that really would save the NHS some cash.

Curious? You can watch the report here.