Deprivation is not equal to ethnicity, says the Director of Equality, Medical Workforce at NHS England, who recognises that to crack inequality in diabetes care, clinicians know the data and now need to 'make an effort to do something about it.'
"Don’t bring everything back to racism. There are many white kids in this country that are deprived so if we focus only on ethnicity then we will miss them. Deprivation and ethnicity are separate strands," stressed Partha Kar, OBE FRCP, National Specialist Advisor - Diabetes - NHS England, and Director of Equality, Medical Workforce. There is some intersectionality between them but if you always loop them together the conversation veers off into an ethnicity debate only and you will miss a big chunk of people who need help."
Give Kar a problem and he will go the extra mile to find a solution. If past performance is anything to go by, he will do his utmost to commit healthcare inequalities to history. "We all know there is a problem, but can we solve it? We can’t solve everything. But can we make an attempt to solve it? Yes, and that’s what I would like to see. If the data suggest there is a problem with deprivation and ethnicity, I want people to at least make an effort to do something about it."
National Paediatric Diabetes Audit – Six Years of Widening Inequalities
Over the past 6 years, the National Paediatric Diabetes Audit (NPDA) has reported widening inequality between children of different ethnicity. The NPDA between 2019 to 2020 found that 20.2% of White children with type 1 diabetes were using a real-time continuous glucose monitor (rtCGM) compared to 15.1% of Asian and 11.7% of Black children; and in the most deprived areas, 14.0% of children with diabetes were using an rtCGM, compared to 25.2% in the least deprived areas.
Regarding insulin pumps, 39.8% of White children with type 1 diabetes were using one, compared to 26.7% of Black children. In the least deprived areas, 44.3% of children with diabetes were using an insulin pump, compared to 31.7% in the most deprived areas.
Access to Technology – Reasons for Freestyle Libre’s Success
From April 2019, NHS England mandated that FreeStyle Libre flash glucose monitoring systems were to be made available to all eligible type 1 diabetes patients across England. Kar was credited with much of the legwork that underpinned achievement of this goal.
Access to Freestyle Libre was so successful because the focus was firmly placed on tackling inequalities and on how to adapt local systems, said Kar, who spoke to Medscape UK about his ambitions to tackle inequalities in healthcare and medicine.
Kar warmly welcomes the consideration of NICE on making Freestyle Libre available for all who need it. "It looks positive so far although it remains at the consultation stage right now," he said, adding that to become a reality, "we need to look at the systems because if this goes into play we want everyone to get it."
"Essentially, the Freestyle Libre roll-out was successful because we tracked what happened with respect to access across levels of deprivation and across ethnicities," he said, adding that, "If there was a gap identified then I asked why, and aimed to address that. Industry were pushed heavily too, and I also asked them what they were doing to reach out."
Data from departments across England were tracked every 3 to 6 months. "We set 20% as a marker of improvement of access but we’ve actually reached 50%. This is great, but we need it to be equally spread across indices of deprivation and ethnicities. If it’s skewed and doesn’t address the inequality gap, then it is unsuccessful, because the people who need it still aren’t getting it."
Closed loop devices (colloquially known as the 'artificial pancreas')present the next challenge. He pointed out that the tactics employed with widening access to Libre can be drawn upon to tackle other issues around inequality. "With Libre we collected the data, we went to NICE, and they have turned round and said 'yes we agree' and are now in the process of making it widely available. We are doing the same now with the artificial pancreas - we are collecting data, we’re handing it to NICE, and then we’re letting them decide."
Lead From the Top – New Official Role for Diabetes in Children and Young People
Kar is currently involved in appointing a National Lead for Diabetes in Children and Young People, and the number one priority is expected to be access to technology irrespective of deprivation level and ethnicity, he told Medscape UK.
"Deprivation, ethnicity and technology access is one of the key areas, but we also want to focus on type 2 diabetes in young people because we are seeing more of this; variation in outcomes between paediatric centres, asking if they have a minimum standard and how big a variation between centres is acceptable and right; and finally, we want to work on achieving a seamless transition from paediatric to adult care because children tend to fall off a cliff at this point."
Dr May Ng, Associate Professor and Consultant Paediatric Endocrinologist - Southport and Ormskirk NHS Trust, spoke at the recent Diabetes Professional Conference 2021 in London and stressed that tackling inequalities in diabetes care also starts with clinical leadership from the doctor, nurse, diabetes educator, dietician, or other diabetes team members, as well as addressing in-built biases in systems and structures. "If you know who the patients are, who is struggling, and who is socially deprived then do that little bit more. It starts with us as healthcare professionals to show leadership and make the change. We have the data now so it’s time for us to take responsibility."
She also highlighted the three-fold difference between top-performing paediatric diabetes units and bottom-performing units across England and Wales. "Only 38% of children are currently accessing insulin pumps yet the NICE 2015 and NICE 2020 NG18 guidance say all children should be offered pumps if it improves their quality of life. Only one-fifth of children and young people have access to rtCGM, with twice as many White as Black children."
Staff perceptions, systems funding, and other unknowns may be the reasons, she added. "Some centres are doing great, and some less so, yet they have similar funding and best practice tariff. We also found that some CCGs are making it more difficult to get CGM funding despite NICE guidance. These are systemic reasons for inequalities."
Dr Ng also noted that perception bias also plays a significant part and can determine who accesses the closed loop system. "Some people have low literacy and don’t get the technology because providers think they won’t understand it,” she explained. "But if we give them the right level of education, they will do really well. A study by Lawton et al showed that families initially perceived to not take on the technology very well, actually did well."
In-built System Biases
Looking ahead to the agenda of this new role of National Lead for Diabetes in Children and Young People and more widely, Kar pointed out that addressing access to technology among deprived populations was pivotal. "If the only way that you will get access to technology is by going to the hospital then some children will go without. The mum might not be able to attend because she’s trying to hold down a job, so because they can’t show up the child misses out."
Kar explained that this is a typical example of a system that already has an in-built bias. He said that clinician or management structures need to explore what can be done to help patients make appointments that work for them. "Maybe the employer can support the mum and still pay her, or perhaps we [can] be flexible and suggest the appointment is held during the evening or on her day off. We want to know what adjustments people are making to accommodate the daily demands certain people face."
Referring briefly to the adult sector, Kar said there is a massive explosion coming with respect to pumps and glucose monitors. Around 20% of the adult population with diabetes have access to pumps, and, he added, like children there is an access issue. "For adults there’s an extra step that complicates matters. In some parts of secondary care, for a patient to get a pump they effectively have to do structured education – this isn’t written into any guidelines from NHS England, NICE recommends it, but it has been built in as a 'must' by local specialists," he pointed out.
Many people who come from a deprived community, or who do not speak the language, face barriers to participating in this structured education and this excludes them from accessing the device. "There are no language or cultural variations, so guess what, they don’t do the structural education and they don’t get a pump."
But there are different ways of implementing this education - online, or via peer support with people already using pumps running the training, Kar noted. "There are so many other ways of doing this training than saying someone has to turn up at a certain date and a certain time, or they won’t get the pump."
He added that the principle whereby the patient has to go into the hospital to obtain care is another in-built bias that contributes to inequalities. "If specialists don’t come out of the hospital then we will never crack the deprivation gap. It’s automatically skewed. Where diabetologists run both a specialist clinic in the hospital, but also go out into the community and work with GPs, [it’s] here that we see less of a deprivation gap in care."
Draft NICE guidelines from November 2021 say that adult patients with type 1 diabetes could be given the choice of having an intermittently scanned (isCGM or flash monitoring seen with Freestyle Libre) and rtCGM devices rather than do finger-prick glucose monitoring tests.
Latest figures from July this year show 50% of type 1 diabetes patients use a flash glucose monitor. Currently, clinicians can only offer CGMs if adults meet five strict criteria, but the draft guidance should make CGM more widely available.
Peer Support Networks – the Way Forward to Level Up Inequalities
Kar likes solutions and he is an expert at setting and reaching goals, and he is prepared to hold people to account when they are set the task of overcoming inequality in diabetes care. "If I ask you - what did you do in response to last year’s data and you say I was too busy, so whatever that is, you didn’t feel ethnicity and deprivation was enough of an issue to tackle it."
One solution he is currently working on is the development of peer support networks to meet the demand for information and training that will be generated by widening access to technology. He believes peer support networks will open doors. "Why not let the patients help each other to an extent." He is part of the team who have launched national self-management digital platforms for all with type 1 diabetes. "I provide the patient with the links to relevant modules and let them look in their own time. If they feel ready then they can go for it, but if some more explanation is needed then I tell them to come back to me."
Kar’s principles around management of type 1 diabetes can be applied to any chronic disease, he said. There are three fundamental planks to his approach: self-management, peer support, and access to trained professionals. The NHS spends a lot of time on number three, which is access to train professionals, but the problem with this part of the plan is that we don’t have enough trained professionals.
"The only way to crack this nut is to increase the peer support. My vision is for every department to have access to peer support so that when a patient with type 1 diabetes goes into the clinic, they are given to a peer support group locally, which could be face-to-face or online."
"With the Libre success, it’s not that the NHS has delivered it, but that patient groups have pushed it and ensured that people understand how to use these devices. Peer support is definitely what drives uptake of devices by all, from whatever background of deprivation or ethnicity, and it means we get a step nearer to beating inequality of diabetes care."
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Cite this: Becky McCall. Both Deprivation and Ethnicity Need Addressing to Alleviate Inequality in Diabetes Care - Medscape - Dec 02, 2021.