Written evidence submitted by Diabetes UK (CBP0042)
1.1. Diabetes UK is the leading charity for people living with diabetes in the UK and our vision is a world where diabetes can do no harm. We are the leading funder of medical research for diabetes, and conduct policy and campaigns work to improve the lives and health outcomes for people living with or at risk of the condition.
1.2. Diabetes is one of the fastest growing and potentially most devastating health crises of our time. Over 4.9 million people are currently living with diabetes in the UK and the number of people diagnosed has doubled in the last 15 years. That means 1 in 14 people in the UK have diabetes.
1.3. Diabetes is a serious condition and can lead to complications such as heart attack, stroke and amputation. Too often, these are avoidable through better care and prevention. Findings show that diabetes also accounts for 10 per cent of NHS spending, the majority of which is spent on treating complications, demonstrating the importance of preventing diabetes and improving care to ease the strain on the NHS and build resilience.
2.1. Concerningly, evidence has shown an estimated 60,000 missed or delayed diagnoses of type 2 diabetes in the period between March and December 2020. Type 2 diabetes can be picked up through NHS Health Checks, or at a visit to the GP for another reason. Early diagnosis is crucial in preventing devastating complications for people with diabetes, and therefore must be prioritised.
2.2. People who are living with diabetes need regular checks to monitor their condition and to make sure that any complications are detected at the earliest stage, often before they are visible. However, last year, 2.26 million people with type 2 diabetes and more than 200,000 with type 1 did not have their usual consultations.
2.3. Our survey of nearly 4,000 people with diabetes showed that one in three people had consultations cancelled that have still not taken place, and one in three have not had contact with their diabetes team since the start of the pandemic. 45% of respondents reported having difficulties managing their diabetes during the pandemic, the majority of whom referred to a lack of access to care and support by their diabetes healthcare team as the reason.
2.4. These missed diagnoses and appointments for people with diabetes are serious. Poor management of diabetes increases the risk of developing devastating complications including stroke, heart attacks and foot problems. Urgent action to reduce the risk of complications is needed to avoid the human and economic costs of complications.
2.5. Data from the National Diabetes Audit shows that across England there was a significant reduction in people with type 1 diabetes (-37.5%) and type 2 diabetes (-40.8%) who received all eight care processes during January to December 2020 compared to the same period in the previous year.
2.6. However, the size of the backlog in care processes varies significantly across the UK. There was significant regional variation for type 1, ranging from a decrease of 29.0% in London to a decrease of 46.7% in the North West. There was also significant regional variation for type 2 diabetes, ranging from a decrease of 32.7% in London to a decrease of 49.5% in the North West. In addition, there was significant CCG level variation in the percentage change[i].
2.7. The percentage difference in the proportion of people who received the eight care processes from ethnic minorities compared to those of White ethnicity for type 1, type 2 or other types of diabetes was 17.7%. There was also a stark difference according to deprivation: for the most deprived quintile (IMD1) compared to the least deprived quintile (IMD5) there was a difference of 8.8%.
2.8. The backlog in diabetes care risks further entrenching health inequalities as those from disadvantaged backgrounds and minority ethnic groups are less likely to have received sufficient care throughout the pandemic. Efforts to manage the backlog must take into account and address these inequalities.
2.9. NHS England should support and direct Integrated Care Systems (ICS) to use available data and tools to prioritise delivery of routine diabetes care services and catch up on the backlog of appointments caused by coronavirus to avoid the potential serious consequences of missed appointments, checks and treatment and missed diagnoses of type 2 diabetes. ICS leaders should ensure support is targeted to those in greatest need and should be required to report on progress by the end of 2021.
3.1. We are grateful to healthcare workers throughout the NHS who have worked tirelessly over the last year to deliver care under unprecedented circumstances. Supporting, retaining and developing the diabetes workforce is essential to overcoming the backlog and transforming care for the future. Investment is needed into the workforce across primary care, specialist and inpatient diabetes services, and mental health care. In order to meet rising demand, the workforce across all of these areas requires development and expansion in order to improve outcomes for people with diabetes, and in turn reduce the impact that dealing with devastating and costly complications has on the NHS.
3.2. The NHS Staff Survey 2020 painted a picture of burnt out, stressed staff, with nearly half (44%) of staff reporting feeling unwell as a result of work-related stress in the past 12 months and almost one in five (18%) saying that they are considering leaving the health service[ii]. A report on NHS and social care workforce published in June 2021 highlighted though that while coronavirus had a huge impact on workforce pressures, staff shortages were an issue before the pandemic[iii]. Staff wellbeing must therefore be a priority within the plans to address the backlog.
3.3. In the longer term, new measures are needed to avert a deepening of the workforce crisis. Diabetes UK therefore supports the call made by the King's Fund, Health Foundation and Nuffield Trust for a new duty on the Secretary of State for Health and Social Care and Health Education England to publish regular workforce supply-and-demand projections to highlight where action is needed. Section 33 in the Health and Care Bill falls well short of what is required to properly identify the staffing shortfalls and support the system develop the future health and workforce our nation needs. We support the sector calls for the Bill to go further.
4.1. Invest in diabetes technology
4.1.1. As health actors look to innovate and transform services in order to tackle the backlog, innovative technology must be seen as a key part of this. We saw the use of Covid Oximetry @home in response to Covid-19 which improved care for patients and healthcare professionals, and we must work to identify other healthcare technologies that can build on this innovation and help tackle the backlog.
4.1.2. Financial investment is needed to make diabetes technology available to everyone who could benefit from it. Diabetes technology makes the day-to-day management of diabetes easier for many and enables healthcare professionals to deliver more efficient care and supports remote consultations. Although this will always be needed alongside face-to-face appointments, it could help support local systems as they tackle the backlog.
4.1.3. Throughout the pandemic, people’s access to care and support from their diabetes healthcare teams has been understandably limited, meaning their ability to effectively self-manage their condition has been more important than ever. Use of diabetes technology has proved invaluable for people with diabetes who have access to it and local health care teams during the pandemic, with 84% of people who use technology agreeing that it helped self-management of their condition during the pandemic. Three quarters (76%) also agreed technology improved their wellbeing and 56% agreed technology made remote consultations easier.
4.1.4. Healthcare professionals working in type 1 diabetes care where people with diabetes have been using technologies like Flash and CGM, have been able to deliver a higher quality of remote care by monitoring issues such as HbA1c and time in range. This in turn allows them to provide more tailored support to people with diabetes.
4.1.5. Additional funding for diabetes technology would enable more people to benefit from greater control and reduce the burden on NHS services as they work to clear the backlog. The Government should provide ring-fenced budgets to local health commissioners, to continue to improve the uptake of existing technologies and enable access to new diabetes technologies for all children, young people and adults with diabetes to help management of blood glucose.
4.2 Invest in mental health
4.2.1 Investment is also urgently needed in the diabetes mental health workforce, and to fund training for other healthcare professionals working with people with diabetes to understand the connection between their mental and physical health. Mental health support must be central in the plans to address the backlog in the NHS. Even prior to the pandemic, we know that children, young people and adults living with a long-term health condition such as diabetes were struggling with their mental health and wellbeing.
4.2.2 Our recent survey showed that over a third of respondents (35%) reported experiencing poor mental health because of their diabetes during the pandemic. This is hugely concerning, in the light of the fact that even in normal times, people with diabetes are twice as likely to suffer from depression, and more likely to be depressed for longer and more frequently[iv].
4.2.3 Government should ensure the implementation of the Mental Health Recovery Plan addresses the mental health needs of people living with long-term health conditions and is adequately funded.
5.1.1. We understand the challenges facing all clinicians working to clear the backlog and have worked with the Primary Care Diabetes Society (PCDS) and Association of British Clinical Diabetologists (ABCD) to develop guidance on how to prioritise primary care diabetes services during and post-pandemic. Priority for diabetes reviews should be based on clinical need, and although biometric parameters such as a person’s last recorded HbA1c offer easier methods of prioritisation, other factors should also be included such as pregnancy planning, mental health concerns, new onset or worsening foot or eye disease.
5.1.2. NHS England should support and direct Integrated Care Systems (ICS) to use available data and tools to prioritise delivery of routine diabetes care services and catch up on the backlog of appointments caused by coronavirus to avoid the potential serious consequences of missed appointments, checks and treatment and missed diagnoses of type 2 diabetes. ICS leaders should ensure support is targeted to those in greatest need and should be required to report on progress by the end of 2021.
5.2 Reticence returning to face-to-face care
5.2.1 People with diabetes are at increased risk of severe complications or death from coronavirus. Many people are therefore reticent about returning to face-to-face appointments where there is a risk they could be exposed to the virus. In a Diabetes UK survey of 4,000 people with diabetes, only 29% of respondents said they already felt confident returning to normal life.
5.2.2 To ensure that patients affected by the backlog feel comfortable accessing the care they need, healthcare settings should continue to ensure the safety of patients by retaining social-distancing measures and masks. This must be combined with an effort to reassure patients and communicate that these measures are in place. The Government, NHS and charities have an important role to play in encouraging people with diabetes to access the care they need to manage their condition.
5.3 Focus on prevention and early intervention
5.3.1 The coronavirus pandemic has shone a spotlight on the nation’s health and exposed the increased risks to people living with long-term health conditions. In the first wave of the pandemic in England, one in three people who died from coronavirus had diabetes. As NHS services are reformed, they must prioritise public health, including preventative measures and early interventions. Preventing or delaying the onset of type 2 diabetes and supporting people to manage their diabetes well will reduce the human and economic costs of complications, and reduce the demands on the NHS in the longer term.
5.3.2 For people with type 2 and type 1 diabetes who are living with obesity, weight loss will be one of the primary goals in managing their diabetes[v], as weight loss for those who are outside of their target weight can reduce HbA1c, cholesterol and blood pressure[vi],[vii]. It is important that the expansion of weight support services provide a mix of digital, face-to-face support and treatment, enabling individual choice of access. All of which will need to fully integrate a psychological approach, as this is central to supporting behaviour based on individual needs and circumstances. It is vital that existing and newly developing weight management services assess individual needs and facilitate appropriate access in a non-judgemental or stigmatising way[viii].
5.3.3 Access must be improved to treatments such as bariatric surgery, which is an effective intervention for people with obesity and type 2 diabetes, with studies showing it can bring about remission in 30% to 60% of cases, and a UK focused study found that surgery is cost saving over 10 years for the majority of patients[ix]. Despite the high number of people living with diabetes who meet the criteria for referral, the number of people accessing this service is staggeringly low in the UK[x]. Even prior to the pandemic, there were only 6,627 hospital admissions for the procedure in 2017/18 in England[xi] despite research indicating that 7.9% of the English population – approx. 3.21 million people – are potentially eligible to receive the intervention[xii].
6.1. Diabetes services across the UK have innovated to enable them to offer care remotely during the pandemic. We have seen rapid growth in remote care for those with diabetes and those at risk, online education and learning and more people accessing technology to monitor their blood glucose levels more effectively.
6.2. Throughout the pandemic people’s access to care and support from their diabetes healthcare teams has been understandably limited, meaning their ability to effectively self-manage their condition has been more important than ever. Use of diabetes technology has proved invaluable for people with diabetes who have access to it and local health care teams during the pandemic, with 84% of people who use technology agreeing that it helped self-management of their condition during the pandemic. Diabetes technology can also enable people to share their health data directly with their clinicians, supporting effective remote consultations.
6.3. The pandemic has accelerated the introduction of remote consultations in the NHS, which has offered people safe ways to speak to their clinicians and can be a more efficient way to deliver care. Our survey of people with diabetes showed that while 42% of people found their remote consultation experience slightly positive, and 28% very much so, a third of people (33%) want all their appointments to be face-to-face, while a quarter (25%) want most of their appointments to take place this way. People from more deprived areas are more likely to want to have more face-to-face appointments, with 36% of people from the most deprive quintile in England wanting all their appointments to take place this way, compared to 31% in the two most affluent quintiles. It is important that the option to see healthcare teams face-to-face is not lost and that digital exclusion does not exacerbate health inequalities. We support the National Voices recommendation that services should be designed with a deep understanding of the needs and preferences of people, particularly those at risk of exclusion and with the highest care needs and provide support.
6.4. The disruption to face-to-face services and access to GPs for blood tests during the pandemic led to the NHS Diabetes Prevention Programme (DPP) adapting its referral pathway, improving access through online, remote and digital routes. The NHS DPP adapted to accept self-referrals from Diabetes UK’s Know Your Risk tool in July 2020, since then people have been able to refer themselves onto the programme. This innovation reduces the need for people to book GP appointments in order to access the programme and can help to ease the pressure on the NHS, while also offering people choice about the way they access care.
7.1. Using data to understand the challenges
7.1.1. The COVID-19 pandemic has highlighted the importance of effective data collection and how its use can transform care. In the context of a significant backlog in routine diabetes care, the effective use of data could go some way to help addressing this.
7.1.2. Local type 1 diabetes services should use data sharing platforms to allow people with diabetes to share their blood sugar data with them remotely. This data will help clinicians to identify who is in most urgent need of accessing appointments with them which, in turn, will support diabetes services to address the backlog in care more efficiently.
7.1.3. Within hospitals, electronic systems should be in place that collect data on the number of inpatients at any one time living with diabetes. This data should be shared internally with the diabetes team and inpatients living with diabetes should have access to web-linked glucose meters so any issues can be easily identified by the diabetes team too. This approach would help to reduce the unnecessary harms many people living with diabetes experience when they are inpatients. In turn, this would help ensure people with diabetes do not spend longer than necessary in hospital as a result of these avoidable harms, freeing up space for hospitals to continue to address the backlog.
7.1.4. More broadly, data use for research can and has resulted in significant innovations in diabetes care. For new data-driven innovations to emerge that will help address the backlog in diabetes care it is important people feel confident in how their data is being used. National Government and the Department for Health and Social Care have a crucial role to play in supporting people to understand how their data is used and this should be prioritised at a time when growing numbers of people are opting-out of data sharing because they do not have confidence in how it is being used.
7.2. Integration to improve diabetes care
7.2.1. The Government should support innovations that better integrate mental and physical health services for those with long-term conditions. As the Health and Care Bill aims to better integrate care, this represents an opportunity to better integrate health and mental health services for people with long-term health conditions such as diabetes.
7.2.2. Even before the pandemic, there was recognition that addressing the mental health needs of people with long-term physical health conditions is an important aspect of improving health outcomes. The pandemic has exacerbated this, with our survey showing that one third of respondents (35%) experienced poor mental health because of their diabetes during the pandemic.
7.2.3. Diabetes UK recommends that NHS England, as part of their facilitation of innovation, should review the Improving Access to Psychological Therapies (IAPT) programme’s effectiveness for long-term health conditions.
8.1. The backlog in diabetes care risks storing up problems for the future if people are left without the support and vital checks that they need to manage their condition. Preventing complications from diabetes and supporting people to maintain good mental health is essential not just for people living with the condition, but also to relieve the burden and cost on the NHS.
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[i] NHS Digital (2021), National Diabetes Audit – Care Processes and Treatment Targets 3rd Quarter January–December 2020.
[ii] NHS England (2021), NHS Staff Survey 2020.
[iii] Health and Social Care Select Committee (2021), Workforce burnout and resilience in the NHS and social care.
[iv] Mommersteeg, Paula, et al. (2013), ‘The association between diabetes and an episode of depressive symptoms in the 2002 World Health Survey: an analysis of 231,797 individuals from 47 countries’, Diabetic Medicine, 30(6), p. 208–214.
[v] Dyson, Pamela, et al. (2018), ‘Diabetes UK evidence-based nutrition guidelines for the prevention and management of diabetes’, Diabetes Medicine, 35(5), p. 541–547.
[vi] Dyson, Pamela, et al. (2018), ‘Diabetes UK evidence-based nutrition guidelines for the prevention and management of diabetes’, Diabetes Medicine, 35(5), p. 541–547.
[vii] NHS Digital (2019), National Diabetes Audit 2018/19.
[viii] British Psychological Society (2019), Psychological Perspectives on Obesity – Addressing Policy, Practice and Research Priorities.
[ix] Borisenko, Oleg, et al. (2018), ‘Cost-utility analysis of bariatric surgery’, British Journal of Surgery, 105(10), p. 1328–1337.
[x] British Obesity and Metabolic Surgery Society (2020), The United Kingdom Bariatric Surgery Registry 3rd Report.
[xi] NHS Digital (2020), Statistics on Obesity, Physical Activity and Diet, England.
[xii] Currie, Andrew, at el. (2021), ‘Regional Variation in Unmet Need for Metabolic Surgery in England: a Retrospective, Multicohort Analysis, Obesity Surgery, 31(1), p. 439–444.