“I felt lucky to get out alive”: why we must improve hospital safety for people with diabetes

Summary

In this blog, Lotty Tizzard, Patient Safety Learning’s Content and Engagement Manager, looks at the safety issues faced by people with diabetes in hospital settings. Reflecting on feedback from Twitter users with diabetes, she looks at why so many people with diabetes fear having to stay in hospital, and asks what the NHS and its staff can do to make it a safer, less stressful environment.

Content

For people with diabetes (PWD), hospitals can feel like unsafe places. As a result, many are afraid of having to access emergency care or stay in hospital as an inpatient. This is partly because PWD are experts at self-management, with intricate knowledge of their own bodies. I have personal experience of this, having had type 1 diabetes myself for nearly two decades. As PWD, although we can't always predict how our diabetes will behave, our decisions on how to react to every situation become instinctive. When control is taken from our hands it feels terrifying; how could anyone else make a safe decision on our behalf? It feels like handing your baby over to a stranger!

Harm in hospital - a reality for people with diabetes

Sadly, all too often these fears are based in reality. When appropriately trained, healthcare professionals can make safe medication decisions for PWD, but research reveals a shockingly high prevalence of harm due to diabetes-related medication and treatment errors.[2]

A recent blog on the hub looked at safety concerns raised by the Healthcare Safety Investigation Branch (HSIB) about insulin administration errors in hospitals. In HSIB’s reference case, the husband of the patient in question (who was in hospital for reasons other than diabetes) had raised concerns about the potential for a dosing error on two separate occasions, but he had not been listened to by staff. As a result, the patient was given five times her prescribed dose of insulin, in what could have been a fatal incident.

These concerns go back years, with various organisations including Diabetes UK highlighting the need for action to make hospitals safer for people with diabetes.[1] The Getting It Right First Time (GIRFT) report on Diabetes published in November 2020 outlined some serious patient safety issues, including the fact that many hospitals have no effective system to identify patients with diabetes and have not trained ward staff in the safe use of insulin.[2] It also highlighted inconsistent timings and content of hospital food as an issue for PWD. According to GIRFT, the risk of developing diabetic ketoacidosis (DKA)—a life-threatening complication of type 1 diabetes—is between 40-60 times higher in hospital than the background incidence rate of the type 1 population. Most people with diabetes who have stayed in hospital will have their own tale to tell about issues with the care they received.

My own experience bears out this concern that many healthcare professionals simply don’t know enough about the condition to look after people with diabetes safely and respectfully. Six years ago I had a planned caesarean section and my diabetes team warned me, “Whatever happens, don’t let them take your insulin pump. They’ll try, but you keep hold of it!” As diabetes specialists, they knew that as long as I was able to, I was the best person to administer my insulin and monitor my blood sugar levels. Type 1 diabetes is a balancing act, and being put unnecessarily on a sliding scale (a glucose and insulin drip often given to PWD when they are in hospital) can damage the equilibrium we work so hard to achieve, and can cause many issues. Of course, sometimes your medical situation may mean that the best course of action is being put on a sliding scale or someone else taking over your diabetes control. But there is a tendency for doctors to see it as the safe option, when it can be unnecessary and less safe than letting an inpatient look after their own insulin needs.

Unfortunately, my diabetes team was right—as soon as the anaesthetist saw my pump he was insistent he should take it from me, and I had to be incredibly assertive to be allowed to keep it on. In the end, I did keep it connected and managed excellent control throughout my three days in hospital. Despite the excellent care I received from many other healthcare professionals, the incident left me feeling on edge and like I couldn’t fully trust the staff.

What people with diabetes fear most about staying in hospital

It’s wrong that the very setting supposedly designed to bring us back to health is a place that seems unsafe to many people with diabetes. Wanting to better understand the issues, I recently asked the diabetes online community on Twitter why going to hospital was scary—and their responses were concerning. I received Tweets from people in different countries, demonstrating that the problem is not confined to the NHS—people from around the world all told similar stories and raised similar concerns to people in the UK.

Here are some of the issues they raised:

Lack of healthcare professional knowledge about diabetes

• A number of people reported nurses not understanding the difference between type 1 and type 2 diabetes, with sometimes dangerous consequences. There were numerous reports of people with type 1 diabetes being denied insulin. One person said they had been denied insulin because they were over 50 and it was assumed they “must have type 2.”
• Another person described how an A&E consultant did not realise they needed insulin all the time, and refused to administer any more once they were out of DKA. This resulted in them going back into DKA and needing further treatment which could have been avoided with the right knowledge.
• Many PWD talked about the fact that healthcare professionals in inpatient settings did not know about how insulin pumps and continuous glucose monitors (CGM) worked. Some had never seen them before. With these devices becoming more and more common in the UK, it seems important that all healthcare professionals are trained to understand what they are, and the basics of how they work. No one would expect an intricate knowledge of how they work, but being able to recognise them, knowing where to look for more information and seeking to facilitate their use in inpatient settings would be a good start.
• Treating hypoglycaemia (low blood sugar) in hospital was also described by many as being very difficult. One person said, “I told them on a few occasions I felt ‘low’. Finally Lucozade got wheeled out but it was almost an inconvenience.”

Having diabetes technology and equipment taken away

• Many PWD reported a fear of devices amongst medical professionals, describing how their monitors and pumps were taken and “locked away.” In one particularly worrying account, someone described being sedated when they protested against having their pump taken away.
• Many people described intense fear and the feeling of having all power taken away from them as a patient when their devices were removed.

Healthcare professionals not listening to or trusting people with diabetes

• Most people were understanding that healthcare professionals can’t be expected to know everything about diabetes. However, the most commonly expressed frustration was about not being listened to when sharing information about their diabetes. This is the issue that was raised in the HSIB investigation. There was a perception expressed by people who responded that some healthcare professionals are “arrogant” and assume their knowledge is superior to that of their patient.
• Some people reported receiving sarcastic and disparaging remarks from healthcare professionals, which heightened their sense of being unsafe. One person said, “It’s dead hard to have to fight your corner while feeling so unwell.”
• Another person who had type 1 for many years reported being ‘diagnosed with type 1’ while in hospital, despite repeatedly telling staff she already had the condition.

Lack of systems to support safety

• There were several reports of insulin drips running out and people being left without any insulin for hours. The reason often given for this was that no doctor was available to sign off the prescription.
• People also reported a lack of checks in places, for example, in nurse administration of insulin via a sliding scale. One person said, “The nurse left the glucose drip on but turned off the insulin. It terrifies me to think how bad this could have been.”
• One person reported a fellow patient having to fetch a nurse from the nurses station because no one was responding to their call button when they needed hypo treatment. This kind of scenario is doubtless linked to NHS staffing shortages that are currently causing many safety issues for staff and patients.

Alongside these horror stories, I did come across examples of good practice which left PWD feeling confident that the care they were receiving was safe. One Twitter user described being able to keep her pump and continuous glucose monitor on during brain surgery, and was told by the medical team looking after her, “You are the expert on your condition, you advise us.” Another said, “In recent years [I have] been really impressed with how all staff just leave me to my own devices.” Another said that, “most HCP listened to me as T1 myself and welcomed my input.” However, most of these positive experiences were qualified with a ‘but’ followed by a story of a negative or dangerous experience of emergency or inpatient care. You can read more of the comments I received from PWD in this community thread on the hub.

Improving safety: policy, training and staff attitudes

This lack of consistency across services is a major problem—we can never plan where or when we will need hospital treatment, so it is important that issues are addressed across all trusts and settings. The GIRFT report highlights this issue, recognising that “there is still a large degree of variation in the quality and availability of targeted inpatient services, and in the frequency of hospital-acquired harm resulting from poor diabetes care.”[2] The National Diabetes Inpatient Audit (NaDIA) has been carried out across 81% hospitals over the past few years and is a useful tool in providing data to help specialities and trusts identify and overcome diabetes-related safety issues. For example, its 2021 report highlighted an increased prevalence of DKA among patients in surgical specialties and recommended “the establishment of processes to ensure that insulin is not stopped in people with type 1 diabetes.”[3] The information provided by NaDIA and the GIRFT recommendations are good steps forward, but whether services will have the resources and capacity to take action, is another question.

People with diabetes tend to be great educators on the condition they live with, and some reported using their hospital stay as an opportunity to educate healthcare professionals looking after them about diabetes. But it shouldn’t be down to them. Diabetes is a complex condition that requires attention to detail and accurate knowledge to manage safely. Not everyone can be an expert, but helping staff identify when to ask for help from someone who is—and having the humility to do it—should be a priority. The GIRFT report observed that having an increased presence of diabetes specialists in inpatient settings can hugely reduce the number of diabetes medication errors. It recommends the presence of a seven-day multidisciplinary diabetes inpatient team in every hospital to ensure appropriate planning and support for patients with diabetes, whatever they are in hospital for.[2]

Perhaps most importantly, hospital staff need to be trained to ask people with diabetes about their management and have a degree of trust in their judgement. Only then will PWD feel confident about going to hospital, whether in an emergency or for elective treatment—shared decision making shouldn’t stop at the hospital door.

References

1 Making hospitals safe for people with diabetes. Diabetes UK, 2017
2 Rayman G, Kar, P. Diabetes GIRFT Programme National Specialty Report. NHS England & NHS Improvement. November 2020
3 National Diabetes Inpatient Audit (NaDIA) Harms 2020, England. Healthcare Quality Improvement Partnership. 2021