May 31, 2018

It’s been a while …

Hello Folks

It’s been a while, there’s a lot to catch up on, so settle in for a long read …

Sorry to have been off the radar for so long. This is by far the longest gap I’ve left between posts but things have been rather full-on recently.

I’d rather not go into detail but suffice to say that Claire’s not been well and life’s been challenging. We’re definitely seeing improvements but this year has been a pretty tough at times, so the please excuse patchy communications. Normal service is now being restored.

I know you all understand this so well: Health is everything. No amount of money or fame could be compensation for bad health and good health is true wealth. It sounds glib and looks very slight when written down but it’s the most simple and powerful of truths. So, ‘Cheers!’ and good health to us all.

OK, since we last spoke there have been some developments.

1. NHS.

We had a great turn out at the NHS Morecambe Bay Health Trust (MBHT) Diabetes Service Redesign Workshop on March 9th and thank you so much to all of you who came. There were about 15 of us from Dia-Beat This! and our presence was certainly felt.

Your testimonies and insights were taken on board, so much so that we have been invited to take part in the ongoing consultation process. I’ve been in touch with Yasmin Mansour from MBHT who organised the event and she’d like to involve as many of you as can attend to come to regular Diabetes Services consultation meetings to feed into the development of diabetes care in the Morecambe Bay area.

This is important.

As we all know the NHS is a far from perfect but it’s a lot better than the other option – privatised health care.

We’re a family with some serious medical needs. If we had to pay a market rate for Claire’s medication and consultant’s fees, we might be ruined. As a freelance worker I sometimes go through times of being paid reasonably well but in the last four years these periods have been less frequent, so if there was no NHS and we had just a basic health insurance plan, like’s the US’s Medicare or Medicaid, we’d probably still be in a bad situation. We’re grateful for the NHS, every day.

The way in which people who need help are treated is a good barometer of how civilised a society is and the NHS is a crucial part of our civil society.

Yes, the NHS is sometimes frustratingly cumbersome and it’s definitely not always responsive to new ideas from unexpected angles – I think you all know what I’m talking about here – but we need to work with it, to improve it and if necessary invest some time and energy in it.

The NHS is absolutely worth that investment because if we want the NHS to survive for future generations and for it to protect our children and grandchildren, we in turn need to help protect the NHS today.

In this instance, as people who have cultivated valuable insights into how to cope with one of the most debilitating and prevalent illnesses of our time, what we have to offer has value.

I’m not going to say anything crazily grandiose like, ‘You could save the NHS’ but when the Service is spending at least £14billion per year on Type 2 diabetes treatment and management, you can see that what we’ve started could offer serious benefit. And also, not forgetting the massive benefits to individuals and their families, to step away (with both feet) from the dreadful consequences of Type 2’s long-term effects, from its co-morbidities and premature mortality. This a battle worth fighting, for so many reasons. I’m sure that light will in time dawn on a better NHS approach to Type 2 diabetes but we can also probably do a lot to hasten it.

So, if you can, please do get involved in the consultations.

Also, so you know, Dr Andy Knox, who’s the local GP Executive Lead on Health and Wellbeing and who was conducting the Redesign Workshop is keen to have your input. This isn’t just a talking shop, it could lead to some positive, progressive change.

2. Lancaster University

For us, the most significant outcome of the Redesign Workshop was that couple of days afterwards we were contacted by a health scientist & researcher from Lancaster University.

He’d heard about Dia-Beat This! from an endocrinologist at Royal Lancaster Infirmary who’d attended the Redesign Workshop on the 9th and he was keen to hear more about what we’d been doing.

We met up and after some consideration it now looks possible that we might be able to run a round of the course as a clinical trial.

What does this mean?

Well, if a second round of the course performs as well as the first one, under the observation of Lancaster University health scientists, it may prove that the course has therapeutic value.

One of the questions doctors and health researchers consider before embarking on a new form of therapy is, ‘Is it better than doing nothing?’ This may sound a low benchmark to commence from but it’s actually a fair question. Some ideas may seem a good first thought but can sometimes only create new problems.

We would however hope to show that Dia-Beat This! offers far more positives than negatives and, of course, it wouldn’t simply be down to our word, the final assessment would come from people who are experienced and knowledgeable in health and nutrition sciences.

If the results were positive, this might lead on to a more complex level of testing assessment and we welcome this.

It’s not a short journey but it could turn out to be very worthwhile.

Also, as I’ve said to you all before, if you can feed into this process, that would be amazing. We’d love for you to be role models and provide guiding examples.

We’re keeping this a little bit under wraps at the moment as it’s early days but the Lancaster University and Royal Lancaster Infirmary people would be interested in meeting you and hearing your stories first hand. More to follow below.

3. One Year Questionnaire

As you’ll recall, in September / October last year many of you filled in and returned a questionnaire, our snappily-titled ‘40 Week Interim Report.’

It took a while to chase all this up and digest but the figures you provided offered some remarkable insights and they are part of the reason Lancaster University are interested in working with us, so thank you enormously to all of you who contributed.

From the Interim Report, Lancaster University have created a graph showing the decrease in body mass and HbA1c and we’ll show you that individually in due course.

Remember, the usual lore is still that Type 2 diabetes isn’t supposed to improve, only get worse. You know the mantra – it’s ‘chronic and progressive.’ Type 2 is still not being viewed as a ‘fluid condition’ – a great phrase – which, probably more often than not, it is.

As I’ve said before, you’re all an absolute inspiration. What can I say, other than a sincere and heartfelt, ‘Well done, all.’ It’s brilliant.

Now, it’s one year and two weeks since we concluded last year’s course with our Graduation Celebration at the Netherwood Hotel in Grange, where you met with the ever-excellent Dr David Unwin and his mum and, as you may recall, this is the point where we’d like to run another questionnaire past you, our One Year results. I don’t know if we’ll do more questionnaires or not but this is certainly an important one.

I’ll be emailing or posting this questionnaire over to you in the next few days and if you can answer it as fully as possible, that would be absolutely great.

As before, there are no right or wrong answers, just be completely honest and give as much detail as you can. As before, many, many thanks in anticipation.

As I explained at the outset, if what we say works, we need to provide evidence and to show our ‘working out’. If you can spare a little time for the questionnaire, it’d mean a lot to us and it is important to us long term.

And remember, whatever you have to report, we’re just keen to know more.

Thank you.

4. Meet-up

We haven’t had any sort of meet-up for about 12 weeks and even then it was at a function where it was difficult to speak with any of you in any depth.

I propose that we have a meet up in about two weeks time.

All being well, Lancaster University will be able to join us.

Does Sunday the 17th of June sound feasible, probably in Kendal? If you can’t make it, let us know and if there’s a lot of people that can’t come that want to, we’ll re-schedule.

By then, you’ll also all have had your questionnaires for a while, so if you want you can return them on the day, that’d be great.

5. The Future …

This last bit is by way of explaining a few other things that have been happening and where we’re going next.

Do you remember the documentary film we were making? The reason we started doing all this in the first place? Some of you have even been interviewed and filmed? Well, it’s neither gone nor forgotten, we’re still working at it.

We tried running a second round of the course in three locations, in Ambleside, in the West End of Morecambe and in Stockton Heath in Warrington.

I wanted to start again from scratch and really focus on filming a small handful of people with very different social and economic circumstances.

Ambleside and Stockton Heath are fairly affluent, the West End of Morecambe is definitely not affluent.

It didn’t happen. The GPs and surgeries we approached wouldn’t respond and this time around the newspapers weren’t playing either and without getting good initial numbers to attend, it’s hard to get a viable group going. Without a certain number of people who are committed to making the change, you can’t reach critical mass to keep the group coming back week in, week out.

We started in October and the Morecambe course died immediately, no one wanted to get involved and we got no response from the two local surgeries. Ambleside lasted until just before Christmas and Warrington until January. There have been people from those two groups who’ve had improvements but there’s nothing to compare with the experience and results of the participants on the first course.

This was all a bit dispiriting. Up to this point, everything we’d done had been successful and it brought us down to earth rather heavily.

So, anyway, yes we’re still set on making the film but it’s been on the back-burner of late while we re-think our approach.

As you all know, January ended on an upswing with our first Ceremony of Non-Diabetes. Obviously, it was a celebration of our first five reversees but it was a celebration of all who’ve attacked their Type 2 and their families and supporters.

We then tried setting up an online Personal Coaching course and some of you have been sending in your details and showing good results. You know who you are and well done.

Again, however, the overall course died off. I was overtaken by family health concerns, life got in the way and unfortunately most of the new recruits quickly folded – with one notable exception, more below – and I think the reason for that is that you can’t beat getting together in a shared physical space once a week and seeing how you do, with a bunch of other people who are wrestling with the same problem that you are. Plenty of people have reversed their Type 2 on their own but they have to be very self-motivated and have a clear goal in mind. If Dia-Beat This! had been around when I’d been diagnosed, I’d definitely have got involved, as a shared experience is definitely a powerful one.

A glowing exception in this ocean of mis-steps is a gent from Morecambe called David Ashcroft, who joined the nascent Personal Coaching course in February. I’m reporting David’s progress with his permission.

I’ve not yet met David in person, he’s a friend of one of our Morecambe participants and when he joined the course his most recent HbA1c was over 8 and he’d had Type 2 for some years. He attacked the change is diet with real gusto, very ably supported by his wife Carol, and his daily blood glucose readings quickly dropped into the normal zone.

By late April David was starting to get BG readings as low as 4.0 which, as you all know, is on the cusp of hypoglycemia. I recommended that David speak with his diabetes nurse and his Gliclazide was duly cut from three tablets per day to one.

David has recently had a fresh HbA1c and since January his reading has fallen from 8.4 to 5.6 and he’s now on no diabetes medication at all, having been taken off his final Gliclazide.

He’s due another test in August and if he gets another done in October / November that’s still sub-6.0 then, as far as we’re concerned, he’s a reversee and we can celebrate his achievements.

If this illustrates anything it’s that if someone has the will to change their health, sometimes they don’t need much other than a little insight and support. David didn’t do the full 16 week course and he didn’t really need to, he got the basic facts and after that it was a matter of cheering him on and diverting him towards the surgery when necessary.

Of course, we need to reflect on why other people don’t find it as easy as David to engage with changing their health, even when there is clearly a sincere desire to do so. This is something we’ll keep coming back to, as there’s a huge amount we have yet to learn.

Still, our congratulations to David and Carol and we look forward to perhaps meeting them on the 17th.

Some of you will recall us talking about Well North and the enigmatic Lord X?

Well, as most of you now know, Lord X was actually Lord Andrew Mawson, who came to Lancaster to meet with a roomful of us back in October. Andrew is a cross-bench peer and is the Executive Chair of Well North and, for a while, we were hopeful that they would putting some funding behind Dia-Beat This! possibly to run a round of the course near Whitehaven.

We were waiting – and then waiting some more – on an evaluation, conducted by Manchester University and thinking, not unreasonably, that any funding would hinge on said evaluation.

The evaluation took seven months to materialise and when it did it contained relatively little about Dia-Beat This! and what we actually do, despite us supplying plentiful material and data.

The worst of this is that it then transpires that Well North weren’t apparently in a position to fund Dia-Beat This! despite Andrew asking for us to supply a budget to run the course, so it seems certain details were lost in translation.

As you can imagine, this is frustrating, as we’ve put a lot of time into this process (at the time of writing nearly 20 days over the past 14 months) and have very little to show for it.

However, by the time we meet on the 17th we’ll have spoken with Samantha Tunney who’s the Executive Officer of Well North and might have a better story to relate.

So, in some respects the past year has been a tough road to tread. Second Round collapse, Personal Coaching crash and Well North coming up blank. It’s cost us time and money and on the face of it, we don’t have much to show for any of it.

There have been some real plusses too.

The Interim Report was brilliant and we’ll be interested to see how you’re all holding up after a year.

The NHS are starting to seem more open to dialogue and we pass our best to Andy Knox in this regard, he’s obviously making a difference.

Working with Lancaster University is an exciting proposition and not one that we’d even considered until mid-March.

The five reversals are brilliant and we hope will the first of more. I know David Ashcroft for one is clearly set to join that club. If more reverse, so much the better.

However, it’s not always about hitting a target set by someone else (me, in this instance).

If you get yourself to a place where you’re happy, where your health is better and you feel free, in particular feeling free from worry over your health, that’s a great outcome, that’s an important place to get to. Some people need a target to aim for, for others it’s perhaps more about attaining a hoped-for quality, and that’s good and sufficient.

Whichever, you’ve all made this work worthwhile. Thanks you all again for taking the plunge and making change happen.

OK, I’ll bring this epic to an end. We’ll be in touch with you soon with the One Year questionnaire, with details of the meet-up on the 17th (if that’s the best date for the greatest number of you) and about the MBHT Diabetes Redesign meetings.

Finally, in addition to the above, I’ve been working on a new project, not related to physical health for a change but still very much to do with security and wellbeing and I look forward to telling you a little more about it when we meet up next.

As always, thanks for your time and onwards!

Eddy & Claire xxx

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