Sat in a hospital bed in 2016, minutes before going under general anaesthetic, I was handed a Lucozade by medical staff to frantically guzzle down.
At just 18, I had been accidentally double-dosed with insulin, the drug I use as a type 1 diabetic to regulate my blood glucose, as my pancreas can’t create it naturally.
Upon admission for pre-planned surgery on my back, I’d been fitted with an insulin drip, despite me telling nurses that I was already wearing my usual insulin pump, which continuously administers the drug, almost like a wireless cannula.
When I asked if I should take my pump off, they said no. Then came the terrifying beep notifying me of a dangerously low blood glucose reading, also known as a hypo, which would send me into a coma if left untreated.
80% of type 1 diabetics feel hospital care is insufficient
On three further occasions, I’ve felt NHS hospital staff lack the knowledge needed to keep me safe — and I’m not alone.
Metro commissioned an exclusive survey of type one diabetics to ask about their experiences of receiving healthcare for something other than their diabetes.
Eight in 10 told us they do not feel that medical staff had enough knowledge to help them manage their type 1 diabetes while in hospital, leaving just 19.5% to conclude that the care they received was sufficient.
It’s worth noting that the research, conducted in partnership with type 1 diabetes charity Breakthrough T1D, collected a relatively small sample of 441 responses, but the individual testimonies fed back were astonishing.
‘I don’t trust anyone’
Bri Henderson, a 29-year-old with type 1, broke her wrist in 2021 and required emergency surgery. England was under strict Covid restrictions, so she was alone, which only worsened her anxiety.
The copywriter, from Brighton, was placed on an insulin drip overnight while waiting for theatre. Although she wears a Freestyle Libre sensor – a piece of equipment used to measure blood sugar – nurses still woke her hourly to prick her finger and check her levels.
What is type one diabetes and what are the symptoms?
According to the NHS website, type one diabetes ‘causes the level of glucose (sugar) in your blood to become too high. It happens when your body cannot produce a hormone called insulin, which controls blood glucose.’
As a result, those living with type 1 diabetes need to constantly monitor their blood glucose levels either through a manual finger-prick test or via a continuous glucose monitor (CGM), which is worn on the arm and tests glucose through the tissue.
They also need to give themselves insulin either by injecting through a needle or by wearing an insulin pump.
Crucially, type 1 diabetes is not related to diet and lifestyle choices. As the Diabetes UK website outlines, the exact causes of type 1 diabetes are not known, and there currently isn’t a cure.
Diabetes UK uses the 4Ts to outline the main symptoms, which are:
Thinner (losing weight without deliberately trying to).
Toilet (going to the loo more often, particularly at night)
Thirst (having constant and unquenchable thirst)
Tired (suffering with tiredness and a lack of energy).
Instead of feeling reassured by the nurses’ double-checking, Bri was left petrified when the medical staff seemed unfazed by her readings.
When checking her own monitor, which she takes everywhere with her, Bri saw that her sugar levels were dropping ‘hard and fast’ while she was attached to the continuous drip – a fact she claims the medical professionals ignored.
‘I called for a nurse to turn the drip off. My request was denied,’ she says.
By 2am, Bri claims her request for the drip to be stopped had been rejected multiple times, an experience she describes as ‘truly terrifying.’
‘I thought if I went to sleep still attached to the drip, I wouldn’t wake up,’ she says.
Thankfully after five requests, the team finally disconnected her drip. But Bri didn’t get much sleep before a 10am surgery and was left feeling she had nobody ‘in her corner’ at the hospital. As a result, she didn’t make a formal complaint at the time.
In her view, hospital staff in the UK have a ‘basic textbook understanding’ of type 1 but are not trained to navigate the ‘complexities’ of the condition.
‘It’s scary considering you’re supposed to put your trust in nurses and doctors while you’re in hospital, but it’s never felt like that for me,’ Bri says. ‘I don’t trust anyone.’
Fact-check: Should type one diabetics be given double insulin in hospital?
Too much insulin, can low your blood sugar to dangerous levels, in a short space of time.
As Dr Suzanne Wylie, GP and medical adviser for IQdoctor explains, the guidelines state that patients who are well enough to continue managing their pump therapy alone are able to do so while they’re in hospital. Only in cases where a patient is very unwell would they not be allowed to.
In these situations, Dr Suzanne says that the pump is ‘usually discontinued and an alternative insulin delivery method [such as an insulin drip] is started.’ Now, here’s the kicker.
Dr Suzanne says: ‘In some hospitals, there may be controlled circumstances where the pump can run alongside an intravenous infusion [AKA, an insulin drip] temporarily, but this is not routine practice and requires hourly blood glucose checks and careful management to avoid over-insulinisation.
‘Overall, the principle is that patient safety comes first, and any situation involving potential “double insulin” requires careful oversight, expert input, and frequent monitoring.’
‘My insulin was locked up’
Sufia Taylor, 50, also struggles to trust NHS hospital staff, saying she’s received tumultuous care since her diagnosis aged 18.
Originally told she couldn’t have children owing to misconceptions about diabetes and fertility, she welcomed her baby in 2001. But when she was admitted to hospital, still pregnant and with severe sickness and unstable blood sugars, she says staff failed to ensure she had food.
‘I was apparently meant to walk to a room where they served it. It didn’t come to me,’ Sufia, who lives in Preston, says. ‘They didn’t know anything at all about diabetes.’
In 2005, when her son was four, she had a stroke. By the end of the year, she’d had another, which led doctors to diagnose her with Takayasu’s disease, a condition that damages the arteries.
When the nurses were treating her, she was placed on an insulin drip, but says staff only tested her blood sugars on an ‘ad hoc’ basis when they had time.
‘That didn’t really work, because sometimes they’d be testing me an hour after I’d eaten, and I’d be high. They’d put more insulin in, and then I would go low,’ she claims.
In these situations, Sufia says she’d be blamed for supposedly having done something wrong. And, if her blood sugar skyrocketed back high again, she’d be accused of ‘eating sweets.’
On other hospital admissions for the condition, Sufia says medical professionals would take away her insulin and ‘lock it up’, deciding they would instead be in charge of her medication.
This proved difficult around meal times, when she needed to take her insulin with her meal, but one would arrive without the other.
‘They’d come an hour after breakfast with my insulin, when my food had gone cold,’ she remembers.
On another occasion, when she asked for something sugary to help treat a low, she claims she was given a sugar-free fizzy drink. She fell unconscious and remembers waking up surrounded by doctors.
‘They just treat me for what I’ve gone in for. They will ignore the fact that I have diabetes,’ Sufia says. Once, her son challenged the hospital on why they were ignoring his mum’s condition, to which he claims a nurse replied: ‘We don’t care about that.’
A previous report from Breakthrough T1D found gaps in care for type 1s continue, despite the development of the Getting It Right First Time (GIRFT) framework, which campaigns for every hospital to have a specialist diabetes inpatient team to ensure that type ones receive proper care.
Almost seven in 10 (68%) of the study’s respondents reported that they didn’t have access to a diabetes specialist nurse during their hospital stay.
Commenting on the latest Metro survey, Hilary Nathan, director of policy and communications at Breakthrough T1D, says type one diabetes is an incredibly complex condition. This condition takes no prisoners, and there are no days off.
‘While there are cases of people receiving good hospital care, this survey shows that all too often, in-patient experience for people living with type one falls below the required standard,’ he explains.
‘We urgently need to strengthen the quality of hospital care with improved training and a thorough understanding of T1D, so that people living with it receive the care they deserve.’
The NHS saved my life, but the overstretched, underfunded service is leaving type 1 diabetics like me without the care we need.
Looking to the future, Sufia hopes to see some urgency. ‘I need to know that they know what they’re doing, not guessing or following orders,’ she says. ‘At the end of the day, I’m the expert on diabetes. If I say I need something, I need it.’
Metro has contacted the Department of Health and Social Care for comment.
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