Go Your Own Way

 

I developed Type One Diabetes just over 26 years ago, in December 1997. I have often said that it was a good moment to join that “club that nobody wants to join” in terms both of my own age and circumstances (I was aged 40, married with three children, settled in life and work) and in terms of diabetes management and treatment (beyond the days of glass syringes, primitive inaccurate blood tests etc.)

Yet even since 1997, things have got markedly better, with the past decade or so having brought two significant advances: The first a quantum leap forward in technological support for those living with the condition; the second the growth of diabetes peer support communities linked by social media networks.

The advances in diabetes technology were neatly highlighted by the nice coincidence that my most recent “diaversary” just before Christmas (19^th December, marking 26 years of the condition) coincided with the final announcement of NICE guidelines about the use of closed loop technology for those in the UK living with Type One, the culmination of a remarkably quick process which started with the arrival of the first mass market non-invasive glucose monitor - the FreeStyle Libre - ten years earlier. Those of us living with Type One under the care of the NHS are indeed blessed with a level of support for our condition which is the envy of the world. The leadership and accessibility of Partha Kar has been instrumental in making this happen, however much he protests that he is “just doing his job”

The growth of peer support fuelled by social media connectivity shows no sign of slowing down, and has achieved a good deal, albeit that the sheer numbers involved mean that it has lost its early intimacy and has inevitably led to a degree of empire building and thinly disguised rivalry between individuals and groups.

These two advances mean that nobody can deny that here in the UK, people living with Type One are well served by the healthcare system and by the community of people living with the condition who are keen to share experiences, expertise and friendship.

And yet…

There is increasingly a nagging feeling in my mind that I’m being left behind, a feeling complicated by the sense that I’m actually perfectly happy to be left behind. What’s going on? It doesn't quite make sense, so permit me to explain.

Forgive the self-analysis here, but in general terms, I like to believe that I am fairly adaptable to changing times. Although I grew up in the pre-digital age, I have embraced that revolution with appreciation rather than the resentment and bewilderment which I often see in others of my own age, let alone those older than me. I do not eulogise the “good old days”, but rather I positively enjoy and greatly appreciate the comfort and convenience of the world in which I am growing old. I spend way too much of my life glued to my phone, like the overgrown kid that I am. I am fully “digitised”

I therefore had no hesitation in taking up Abbott's groundbreaking FreeStyle Libre at the earliest opportunity, and in subsequently embracing its evolution into a de facto CGM using my smartphone rather than the reader. Moreover, I was among those singing the praises of this device from its earliest days thanks to my early adoption of the online diabetes community which coalesced from around 2012 onwards. It was the diabetes community that first alerted me to these advances in technology, and it remains a source of great pride to me that I played a small but significant part in the campaign to get this life-changing technology onto the NHS prescription tariff in 2017.

However, I now find myself being left behind as others embrace pumping for insulin delivery and closed loop systems to automate this process to a good extent. I feel a bit like the man who bought a top-of the range VHS video player in the late 1980s and refused to embrace DVDs, or the man who bought a stack of DVDs and CDs in the 1990s and now refuses to subscribe to Spotify or Netflix.

I am, by nature, a creature of habit with little taste for adventure and no thirst for the unknown. The facts about me speak for themselves: I’ve been married to the same woman for 40+ years; lived in the same town for 36 years; taught in the same school for 36 years; banked with the same bank since I left university; I’m now driving my 6^th successive Mitsubishi; I’ve been with 02 since it was BT Cellnet, firmly wedded to Android rather than Apple, and I feel guilty and disloyal whenever I am eventually persuaded to change energy supplier in search of a cheaper deal. I am inertia personified in some respects.

Small wonder, then, that I am perfectly happy with “just” my insulin pens: I know what I like and I like what I know could have been coined to describe me.

I have therefore watched with interest rather than envy as the Type One world has gone closed loop crazy. Social media timelines are filled with posts testifying to the life-changing effect of what some term an “artificial pancreas”, with screenshots of flat overnight blood sugar lines or of Strava maps telling the world that its author has been on a run freed from the need to fret about its effect on sugar levels. To be honest, these have started to become something of a bore.

And here I sit, armed only with my FreeStyle Libre and my ageing insulin pens, with a time in range of around 75%, an Hba1c of around 50 and no enduring sense that my life has been ruined by diabetes. Do I want an insulin pump? Do I want it to be linked to a CGM to take over the management of my diabetes?

The truthful answer is “I’m not at all sure I can be bothered”. I’ve got better things to do with my life than to learn the ins and outs, the tips and tricks of a pump when my own tried and tested “hit and hope” methodology continues to serve me well. Yes, I get hypos and hypers, but armed with a Libre I can and do correct with micro doses or snacks in a manner which works well for a largely home-based retired life. If I were still working, I’m pretty sure that I might think rather differently.

However I do often wonder why, if all this automation is supposed to be so liberating, it appears to occupy so much of peoples’ time and energy. I never see any posts by people - still the majority - using MDI, and I sense that’s at least in part because many of them, like me, prefer to just inject and get on with their lives. My strategy for living with diabetes has always been to keep it in the background where it belongs.

So am I opposed to the continued rollout of technology? Absolutely not. I firmly believe in “each to their own”, and I am well aware that there are many for whom a more automated approach is a godsend. And they are NOT all youngsters – I know many PWD of my age and older who swear by the life-changing benefits of looping.

Will I continue to resist the use of a pump and an HCL? I don’t know – ask me again every few years!

Do I think there are other issues, at least as urgent, arguably more, that perhaps should get the same level of effort, publicity and indeed funding that have driven the “rise of the machines”?

I most certainly do.

I’ll pick out three:

Firstly, I'd like to see the spread of non-invasive glucose monitoring on prescription to those living with Type Two diabetes. The phrase knowledge is power is often applied in a healthcare context, and despite the recent progress in linking CGM to insulin delivery, I still believe that knowing BG levels and their predicted direction of travel, and knowing what the effects of different foods and levels of exercise have on blood sugar levels provides for many the key to better understanding of, and hence better self-management of all types of diabetes.

Secondly, I'd like a reform and standardisation of the education given to people with diabetes at or soon after diagnosis. Another over-used cliché springs to mind - “education, education, education”, and I have a strong sense that there is huge variation on the availability, timing and delivery of education, and that the DAFNE and DESMOND models, with their somewhat rigid teachings, have been allowed to dominate to the exclusion of more streamlined models better suited to this age of busy lives and flexible working hours.

Thirdly, I would love to see a real and sustained investment in the understanding and treatment of the hitherto under-reported psychological aspects of living with such a burdensome and stigmatising condition. The recent publication of the parliamentary report into disordered eating among those living with Type One shone a light on this scandalously neglected issue. This one is close to my heart, as my best friend is among those affected and among those most engaged in the calls for better understanding and more integrated care, but it struck me very strongly how many other names and faces familiar to me from the online communities have been to some extent living with this debilitating and dangerous add-on to Type One.

So there we are: the outlook for people with Type One is vastly better today here in the UK than it was even 25 years ago, let alone a century ago when insulin therapy changed Type One from a death sentence to a manageable burden. Yet this situation brings its own challenges at a time of ever-increasing demands upon the limited resources of any healthcare system, the NHS more than any. I hope that we can continue to roll out pumps and loops to all who need or indeed want them, but at the same time, I hope that we in the UK will also count our blessings and make sure that other deserving, and in many cases more urgent, calls on scarce funds can be met.

I close by reiterating what is often said, but is so important: Your diabetes, your way. There’s enough factionalism out there, and this post is absolutely NOT intended to criticise those who have shown such drive and enthusiasm for the advance of technology, be they patient advocates or healthcare professionals. These people have been truly heroic and have achieved unimaginable progress in a remarkably short time.

But we must remember that, just as in everyday life where not everybody wants a smartphone, a smart TV, state-of-the art satnav and suchlike, not everyone wants their diabetes to be managed by technology. How many programmes on your washing machine do you actually use? How many apps on your smart TV do you completely ignore? And do you never get irritated by the constant bleeps and warnings, the sheer information overload, given by modern cars? Technology is wonderful, but can be too much of a good thing for some.

It's the same with diabetes technology: an insulin pump with closed loop is not much help if you live with diabulimia.

I am not extreme on this, but I do hope that other urgent needs of the diabetes community will not be overlooked or underfunded amidst the scramble for diabetes tech. Despite what the hashtag says, diabetes tech can wait - for some of us.

As the song (and my title of this post) says, Go Your own Way - and I’ll go mine.

Sit Down (next to me): Why men need a shed.

Over the past three years, I have found myself heavily involved in my local community in a manner which has occupied my time and my mind, suiting very well this stage of my life: retired from a busy and all-consuming job, yet still with the energy both physical and mental to commit to voluntary work. Perhaps the best of several aspects of community life in which I am involved has been my part in helping to set up and run a Men’s Shed.

Never heard of a Men’s Shed? Neither had I until just over a year ago. Bear with me while I tell the story - How Kirkham got its shed.

Kirkham, the town which I have lived in or near for towards 40 years, has since 2020 been the fortunate beneficiary of some significant government funding to help regenerate it in both physical and social terms.

Kirkham is a small (population approximately 8000) market town in the Fylde district of Lancashire. If you are unsure of the geography of this part of the world, the Fylde is the name for the largely flat, rectangular area which lies between the Lune estuary in the North, the Ribble Estuary in the South, the M6 motorway in the East and the seaside towns of Fleetwood, Blackpool and Lytham St Anne’s in the West. Historically, it was called Amounderness and was one of the hundreds (an archaic term for an administrative subdivision of a larger region) of Lancashire.

Kirkham is an ancient town, established on the site of a 1^st century Roman cavalry hill fort, and named before 1066, after the church which is said to date from 684AD.  For much of its history Kirkham was a town of some importance, an administrative and ecclesiastical capital of the Amounderness Hundred, and a market town serving a wide and prosperous agricultural hinterland. In the 18^th and 19^th centuries, it prospered as a centre for the manufacture of flax and rope, with the golden age of sailing ships providing a ready market for such products: it is said that at the time of the Napoleonic Wars, very much a highpoint of British naval power, much of the Royal Navy was powered by sails made in or near Kirkham. When cotton superseded flax, Kirkham’s mills adapted to that trade, but by the 20^th century, the town was in long-term decline, and found itself the poor relation to the might of industrial Preston to the East and bright and breezy Blackpool to the West.

It nevertheless retained a level of prosperity through the turbulence of the 20^th century, boosted by the nearby defence industry (BAE Systems has a vast military aircraft factory at nearby Warton, on the site of a wartime American Air Force base) and also by the desirability of semi-rural life which has made market towns so popular for lifestyle reasons in the later 20^th and early 21^st centuries.

Nevertheless by the early 2000s Kirkham was beginning to look and feel down on its luck, its high street shops and businesses unable to compete with the double threat of the online world and the giant retail parks of nearby towns.

When, just before the Covid-19 pandemic of 2020-2022, small towns across the UK were invited to bid for funds to regenerate their high streets, Kirkham was an ideal candidate, and was awarded significant government funding aimed at enhancing its town centre as a hub for small businesses and niche retail and leisure whilst also developing community spirit, pride and a greater sense of wellbeing among residents.

It is fair to say the programme has not been plain sailing: the double whammy of the Pandemic followed by the inflationary spike sparked by the Ukraine War caused delays and a big hit to the spending power of the original funding, such that the physical regeneration plans had to be significantly scaled back. The redevelopment of the Market Square into a traffic free events space, and the remodelling of the main street into a more pedestrian-friendly thoroughfare are both projects which will, I believe, greatly enhance the townscape, but in the short term the road works have proved to be lengthy, disruptive and riddled with unforeseen snags and delays, such that the whole project has been an easy target for those who object to it. The loss of what was perceived as a car park - the Market Square - has provoked anger among those who cannot see the bigger picture of how small town centres must evolve if they are to survive and prosper.

So much for the negatives - how about the positives?

Well, the less tangible, but equally important, strands of the regeneration project have been much more successful, and have very much served their purpose of enhancing pride, community spirit and an awareness of local history and heritage.

Moreover, it has been my good fortune to find myself a key player in these aspects. My accidental involvement in local history has caused me to be a de facto curator of the Town’s Local History and Heritage Collection, the remnants of what was once a town museum. This happened because when the owner of that collection, an eminent local historian, died in 2021, his family asked the Parish Church, through me, if they could house and exhibit it. I offered to oversee this project, and set up a small Local History and Heritage Collection in a redeveloped gallery in the church building.  By so doing, I found myself wrongly cast as a local history expert - I always stress that I am an enthusiast, not an expert. I was nevertheless happy to be drawn into various cultural and heritage projects which were being run in the town, funded by the regeneration monies.

These have been pretty successful, providing activities and camaraderie for local people, uncovering some previously hidden talents, creating lasting heirlooms for the town which I am only too glad to help display and care for in the Church’s community rooms.

A tapestry depicting Kirkham’s industrial heritage, created by one of the craft groups

However, early in these projects, a glaringly obvious thing became apparent: virtually all participants were female. Not at all unusual or unexpected, but in this conservative (small ‘c’) community a pretty extreme case: groups involved in things like exercise, local history, gardening, cooking, arts and crafts and so on all flourished thanks to the expertise of facilitators and yet largely failed to attract any male participants. The women participants all reported that their involvement had improved their sense of belonging, made them new connections and friendships, and had generally improved their mental health and sense of wellbeing. A great outcome, indeed a valid return on the investment of public funds, yet one which was only reaching around 50% of the population.

One day, in late 2022, as virtually the only male with any level of involvement in these wellbeing projects - and that only because of my own perceived expertise as an events organiser - I was discussing this issue with one of the (female) facilitators, in the presence of my son (a science teacher at the local high school) and another male friend. My son mentioned what all teachers know, that virtually all voluntary projects attract more girls than boys, and that such reticence on the part of most men is an engrained and lifelong trait, and a potentially harmful thing. Girls and women readily form close friendship ties which engender self-care and mutual support, whereas men and boys tend to do things like sports and hobbies yet without the self-care.

My son mentioned that he had heard of a movement which orginated in Australia called “Men’s Sheds”, whereby a hub is set up in a shed where men can gather and undertake traditionally “male” activities - DIY, model-making etc. - and in so doing they are gently drawn into sharing their concerns, worries, stories and everything in a way that men generally don’t do. At that point, a visitor from Australia overheard us and chipped in with confirmation that Men’s Sheds were indeed very much a thing in her homeland, regarded as a common and effective tool for improving social cohesion and wellbeing. 

A serendipitous overhearing by a visitor to our town, but things have a habit of turning out well if they are meant to be, and so it has proved with Kirkham’s Men’s Shed: following some rather theoretical chat that we could maybe set up a shed locally, we realised that our church possessed a highly suitable brick built shed, well over a hundred years in age, which was used to house gardening equipment for the churchyard and also as a store for anything that the church didn’t dare throw away.  We started to speculate as to whether we could set up our metaphorical shed in this physical shed. 

The Shed: a familiar feature of the churchyard for decades

Then, another stroke of serendipitous good fortune: the Practice Manager at my GP Practice, who knew that I was involved in various community groups, messaged me to say that she had identified a source of NHS funding for new wellbeing projects and wondered whether I was aware of any deserving projects which might be interested in applying. Literally off the top of my head during a phone chat with her, I mentioned our Men's Shed idea, and she was immediately struck by the plan. In healthcare circles, social prescribing is very much in vogue, and with the well-known reticence of men to ask for help and the consequential high prevalence of mental illness, even suicide, among men of all ages, there is a growing feeling that low-key, low cost solutions based in the community have a role to play in addressing this problem. The Practice Manager urged me to apply for funding and promised her strong support. 

It had started to look like an idea worth pursuing, and without anyone actually ever deciding it or appointing us, two individuals emerged with the time, the enthusiasm and the expertise to make it happen: one was me, the other a longstanding friend and associate of mine, a few years younger than me but in fact an ex-pupil from my first year in teaching. His and my paths had crossed in several areas over the years, notably as fellow churchgoers and as committee members of our school’s alumni association, and he is a freelance management consultant and project manager by profession, so a great fit for getting a project up and running.

So, we applied for funds and were duly awarded the full amount on offer. The shed was in a way ready and waiting, although it required a good de-clutter, and we decided to launch the project without delay. This was in June 2023.

Six months on, its success has been remarkable.

The first stage was easy, almost too easy: a number of individuals came forward who were either members of the church congregation or men already known to the church community. Among these were my son, who is one of the churchwardens and was the instigator of the idea and the Vicar, a new incumbent keen to grow and develop the church’s community outreach work. Another was a community “good egg” who was loosely associated with the church and keen to do his bit for the good of others.

However, the real challenge was to reach out to men in the community who were not connected to the church, and who might be beneficiaries in terms of wellbeing, rather than just men wanting to help run a worthy project. A key challenge was to balance the very real involvement and support of the church - we were, after all, using their shed - without people feeling that this was a church group as such. Men are relatively thin on the ground in most church congregations, and are often indifferent or even hostile to the church either as a place of religious acts of worship or as a doer of good works.

So we made it known through various channels, including local GP practices, the Town Council, the town’s football club’s community foundation and so on, and within a very short time, men emerged - some known to us, many entirely new to us. Among them were an elderly widower who had been coming to the church literally every day since losing his wife some six years previously, and who had hitherto kept himself to himself, lighting a candle and spending time alone with his thoughts then returning to his home in nearby Blackpool; a man whose young adult daughter had died suddenly and unexpectedly; a man who had lost most of his sight and been forced to retire early from a job as a DT teacher; several others who had simply lost the confidence to engage with others in later life; and indeed a prisoner from the nearby Open Prison who had been on work placement at the church and was looking to reintegrate himself into more normal social circles as he neared release at the end of a long sentence. We requested and were granted permission for him to attend the Shed meetings on condition that he was back at the prison by a specified time, under our supervision.

A planning meeting in the shed with advisors from local councils,
NHS and AFC Fylde Football Club

Planting wildflowers, June 2024

Tasks started to come our way: a project to transform parts of the churchyard into a wildflower meadow in areas where ancient graves were no longer actively tended by grieving families; another to build some wooden benches to replace damaged and worn out ones in the churchyard; another to carry out a full assessment of the stability of gravestones, a statutary requirement of all churches; another to paint hi-vis strips on some steps around the churchyard which presented a real trip hazard; then perhaps best of all, we were commissioned by the Town Council to design and build a new stable in which to place the Town’s nativity figures in the town centre’s Christmas display.

This latter project was a joy to watch unfold: one man took the lead, designed something, literally on the back of an envelope, and bought the wood. With a tight deadline, others helped out when possible, under his direction, eventually completing it with minutes to spare until the deadline that we had agreed with the Council. 

A beautiful, traditional Crib scene was duly installed in the town centre gardens, unveiled by the Mayor and blessed by the Vicar at a simple ceremony with children from local primary schools, and subsequently admired and appreciated by all.

"All our own work": Kirkham's brand new Nativity Scene

Blessing the crib, December 2023

But best of all, amongst all this busy-ness, are the times through this bleakest of winters when frankly it has been too cold and too dark to do any work and the men have just sat and chatted, exchanging anecdotes and gems of wisdom, chewing the fat over what’s going on in the town or in the world outside - all over a warming cup of tea. No banter, no laddishness, no dirty jokes, none of that dreadful thing which Donald Trump called “locker room talk” in a pathetic attempt to explain away his loathsome misogyny - just a group of men sitting with an unspoken but very real sense of belonging and of camaraderie. One of the original members, a busy family man with no apparent “need” for such a wellbeing project, put it perfectly when he recently said “This was the thing I didn’t even know I needed in my life”

So yes, it’s great to get things done, and the sense of achievement from a shared task or project is enormous, but above all, as the cliché goes: “it’s good to talk”. And if it takes a shed to make men feel able to talk, so be it. Never did simply sitting down feel more productive.

Men at work

For my blog posts, there is always a song to provide a title, and what better than these words from Sit Down, an anthemic hit by forgotten 90s Madchester band James:

Those who feel the breath of sadness

Sit down next to me

Those who find they're touched by madness

Sit down next to me

Those who find themselves ridiculous

Sit down next to me

After all, over these winter months, all we've done is sit down and chat. 

For anyone reading this who works in healthcare, especially in general practice, I cannot overstate the value of Men’s Sheds based on my thoroughly positive, albeit limited experience. Social prescribing may sound like a passing fad, but from what I’ve seen it really can achieve a great deal of good at very little cost.

Keep taking the tablets? Maybe, but why not just Sit down next to me?

 

In case this post seems somewhat self-congratulatory in tone, I must acknowledge many individuals and organisations who have helped or supported this project:

My son, Nick Long for making me aware of Men's Sheds; project leader Chris Malings; Sue Flowers and her Phoenix Rising Wellbeing Group; Helen Leece from the Gathering Fields Retreats; Ash Tree House GP Practice; the Vicar and PCC of St Michael's Parish Church Kirkham; Kirkham Town Council; Fylde Borough Council; Lancashire County Council; AFC Fylde Community Foundation; and perhaps above all the men who have attended and participated in our activities.