I see my type 1 diabetes as my SUPERPOWER
Orange juice always at hand, sugar pockets sewn into costumes — and a VERY strategically placed glucose monitor for those naked shots. Grantchester star JAMES NORTON reveals how he doesn’t let his condition hold him back...
JAMeS NoRToN is a rapidly rising star in the acting firmament, playing Grantchester’s ruggedly handsome and much-loved vicar Sidney Chambers for three years.
He then smouldered on TV as Andrei Bolkonsky in War & Peace, was the terrifying villain Tommy Lee Royce in BBC1’s Happy Valley and banker-turned-gangster Alex Godman in McMafia. He’s even been tipped as the next James Bond.
But behind the scenes, what viewers don’t see is that James, 33, always has a glass of orange juice to hand on film sets, just in case his blood sugar drops too low. or that if he’s doing a scene without his top on, there’ll be a glucose monitor stuck out of sight on his bottom.
For James has type 1 diabetes, an autoimmune condition that affects around 300,000 people in the uK and is on the rise.
It occurs when the body’s defence system mistakenly attacks beta cells in the pancreas where the hormone insulin is produced (by contrast, type 2 diabetes is linked to poor diet and obesity).
outwardly, type 1 is an invisible condition: people look healthy. But poorly controlled blood glucose (also known as blood sugar) can wreak havoc, damaging the tissues — particularly the small blood vessels in the eyes, the kidneys and those that supply the nerves in the hands and feet.
Too little blood glucose can lead to ‘hypos’ (hypoglycaemia), characterised by dizziness and shakiness. If not treated quickly — with a sugary drink or glucose tablet, for example — this can lead to drowsiness and confusion, unconsciousness, or, more rarely, a seizure or coma.
Blood glucose management can be an inexact science; a change in temperature, an adrenaline spurt or catching a cold can send blood glucose rocketing as the body releases a range of substances to deal with stress or fight infection.
‘Being in a play is complicated because I might be on stage for up to an hour-and-a-half,’ explains James. ‘If it’s a period drama I’ll ask the costume designers to create a hidden pocket where I can stash some sugar tablets.
‘Then, if I start to feel shaky, I’ll improvise: I’ll wander upstage, throw three dextrose tablets in my month and then carry on with the scene. I’ve lost count of the number of times I’ve done that.’ BuT
if he now manages his condition well and with good grace, James would be the first to acknowledge the example of his family. And, more recently, the latest diabetes technology — something he believes all people with type 1 diabetes should have access to.
‘Within our little nuclear family of four, it’s completely normal to have type 1 diabetes; my dad is the only one who doesn’t have it,’ explains James, who was brought up in North Yorkshire by his parents, Lavinia and Hugh, both teachers, and then studied at Cambridge and RADA.
‘ My little sister, Jessie, was diagnosed when she was nine. My mum was diagnosed when she was 58 [roughly the same age as Theresa May was when she found out she was type 1].
‘Then when I was 22 and just starting out in my acting career, I began to experience the same symptoms. I was losing weight, urinating more often and feeling very tired.’
A blood test confirmed he had type 1 diabetes.
While most people with type 1 are diagnosed between the ages of 16 to 25, it can develop at any age.
Research suggests type 1 is due to a combination of genetic predisposition (there are distant relatives with the condition on both sides of James’s family) and some kind of environmental trigger.
Despite his family history, the diagnosis still came as a blow.
‘It was traumatic, because I’m a terrible hypochondriac anyway,’ admits James. ‘ But it was also manageable because I had the best role model in my sister, who was training to be a doctor. I called her so many times, worrying about things, which was strange, because I’d always been the protective older brother, keeping an eye on Jessie at parties.
‘Having type 1 was particularly hard for her through her teenage years when she had so many other things to contend with. But then, when it was my turn, she got me through it, too,’ says James, talking to Good Health exclusively at a major conference for families affected by type 1.
‘Because my sister had been diagnosed so young, my parents already knew all about management and control, and also the need for that psychological balance between recognising that it’s a serious, life-long condition, but not letting it define us,’ he says.
‘I know it’s terribly hard for parents. But I think being over-protective and restrictive does as much damage as the disease.’
James doesn’t follow a special diet and has never cut out sugar. ‘If I turn down pudding it’s because I need to lose weight for a role, not because of my diabetes,’ he says. ‘I love chocolate, I love red wine.
‘As a family, we’re so relaxed about our diabetes. My mum has had to bring needles to film sets because I sometimes forget.
‘We don’t think of ourselves as a “diabetic family”. We’re just three type 1s getting on with it.’
But there is no doubt that for people with type 1, managing blood sugar levels can be a relentless task, involving frequent (and often painful) finger- pricking throughout the day with a small sharp lance to test blood glucose, and endless calculations about how much insulin to inject to keep levels as close to normal as possible.
There are technologies that reduce this burden. For example, some people rely on an insulin pump, a small electronic device with a tiny cannula (tube) that sits just under the skin. This allows basal insulin (also known as background insulin) to be delivered around the clock. But diabetics still need to give themselves a different, faster-acting insulin, known as a bolus, whenever they eat.
There is also a less invasive way of checking blood glucose, with continuous glucose monitoring (CGM) devices. These contain sensors to measure the amount of glucose levels and can alert the wearer to a hypo.
A version of this is a so- called flash monitor; currently, the only model available is FreeStyle Libre ( which Theresa May has). It consists of a disc about the size of a £2 coin that sits on the arm with a small sensor inserted under the skin. users swipe the disc with an e-reader or smartphone to read their blood glucose level.
It means far less finger-pricking (though they still need to fingerprick occasionally as the sensor can give false readings; and, unlike continuous glucose monitoring, flash monitoring doesn’t alert the user to hypos). WHAT’S
made the real difference for James is a new continuous glucose monitor called a Dexcom G6, which looks like a small battery attached to a plaster and sends a constant stream of data to his phone, sounding an alarm if his blood sugar level is beginning to go too high or too low. It is the only monitor so accurate that users don’t need to fingerprick at all.
James wears his CGM on his chest. ‘But on days when I need to bare my torso, I attach it to one of my buttocks,’ he laughs.
James chooses not to use an insulin pump, preferring to give himself injections.
‘As an actor, I’m constantly changing costumes. Sometimes I have to do a scene naked, with my top off, or wearing tight clothes ,’ he says. ‘I don’t want to be attached to two pieces of equipment.
‘I give myself around 15 insulin injections a day,’ he says — this complements his main insulin dose. ‘I’m happy with that because
‘I’m painfully aware that not everyone can have the lifechanging technology I have’
it suits my lifestyle. Bear in mind it’s a 5mm needle and it takes me all of seven seconds. I can do three during a meal — my Dexcom tells me if I need more insulin before pudding — and no one even notices.
‘Since using Dexcom, I haven’t had a single hypo, and my blood glucose has crept down below 3.7.’ ( The normal range is between four and six).
A couple of weeks’ ago, his sister Jessie, now 31, had her first baby, a healthy boy named Kit weighing more than 10 lb.
‘She used Dexcom to monitor her blood glucose. Her HbA1c [average blood glucose over the past three months] was perfect throughout her pregnancy, so she was really able to enjoy it,’ says her brother.
James, who pays for his glucose monitor himself (it costs around £160 a month compared with £70 for Libre), believes that everyone who would benefit should have access on the NHS to it.
‘The sooner this is made available to all type 1s from an early age, the more manageable the condition will be,’ he says. ‘It means people with diabetes can relax and live their lives without the constant burden of feeling different.’
‘I know how lucky I am to have gone from painful finger-pricking 20 times a day, to the Libre, to Dexcom. I want to be able to sing from the rooftops how brilliant this technology is. But I’m painfully aware that not everyone can have it on the NHS.’
There is international recognition that people using technologies such as continuous glucose monitoring and insulin pumps are more likely to achieve the best glucose levels.
Under National Institute for Health and Care Excellence guidelines, CGMs can be prescribed for certain groups, but are deemed not cost-effective for most adults.
From this month people with type 1 can now apply for the Libre on the NHS. Although the charity Diabetes UK is working hard with local health authorities to ensure everyone who can benefit will get it on prescription, there is no guarantee they will get one, let alone the latest models such as Dexcom. ‘We need to make sure that the Health Secretary Matt Hancock understands that investing in new technology for all type 1s will ultimately save the NHS millions of pounds in diabetic care down the line, because people will have far fewer complications,’ says James.
‘It’s extraordinary not to have to think about my blood sugar levels until my phone beeps. It’s given me the chance of living a completely normal life.’
Just how normal was clear from a question-and-answer session with James at the recent Talking About Diabetes conference in London. It was set up by three endocrinologists: Professor Peter Hindmarsh (who last year won the Daily Mail NHS Health Hero award), Dr Catherine Peters and Dr Partha Kar. Dr
PETErS, a consultant in paediatric endocrinology and diabetes at Great Ormond Street Hospital, explains: ‘ We realised that the thing that would help people most is the chance to talk about what living with diabetes means.
‘A lot of our parents are very sleep- deprived because they’re constantly finger- pricking to check their children’s blood glucose levels through the night.
‘I suspect that every family goes through a grief cycle. But we wanted young people to know that having diabetes isn’t a barrier to following their dreams.’
And that’s where James came in. At the conference, he was asked whether he’d thought of taking a different career direction in the light of his diabetes.
‘I was proud to answer that I never thought for a moment it would slow me down,’ he says.
‘The fantastic thing about an event like this is that you meet not only ridiculous luvvies like me, but professional athletes — cyclists, boxers, and triathletes — with type 1, who live ferociously physical lives and are at the top of their game.’
James himself is so comfortable with type 1, he now describes it as ‘like a mini-superpower’.
‘It’s given me extraordinary empathy,’ he says. ‘ And that empathy extends to everyone — epileptics, coeliacs, diabetics — anyone who has something that makes them a little bit different. It’s a lovely, empowering thing.’