Written evidence submitted by Diabetes UK evidence (FGP0361)

 

Introduction

 

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. We are also a membership organisation, representing both healthcare professionals and people with diabetes, offering training, advice and events.

Over 4.9 million people are living with diabetes in the UK, with diagnoses of type 2 having doubled in 15 years, and a further 13.6 million people are at increased risk of developing the condition. Prior to the pandemic, diabetes accounted for 10 per cent of NHS spending, which equates to around £19,000 a minute. The majority of this is spent on treating serious complications from diabetes, including stroke, heart attacks and sight loss, which could be avoided with better care and prevention, avoiding the catastrophic financial and human costs associated.

Over 3.1 million people are living with type 2 diabetes, which is predominantly diagnosed, treated and managed within primary care. Most people with type 2 diabetes have at least two primary care appointments per year, plus more for those dealing with complications or comorbidities, managing the condition is therefore a significant part of general practice workload. Early diagnoses, careful management and regular health checks support people to live well with diabetes and prevent complications, which in turn reduces the pressure on the NHS. It is therefore essential that routine care is restored quickly for people living with and at risk of diabetes.

  1. What are the main barriers to accessing general practice and how can these be tackled?

Diabetes UK is extremely concerned about the backlog of routine diabetes appointments that has built up during coronavirus as services have been disrupted. NICE recommends that people with diabetes receive eight annual checks, including an HbA1c blood test, foot checks and retinopathy. Many of these are delivered within primary care, and the general practice would usually call people forward for these appointments, however due to the disruption caused by coronavirus and the additional responsibilities of delivering the vaccine programme, people consultations. with diabetes are not being offered these checks. Worryingly, last year, 2.26 million people with type 2 diabetes did not have their usual consultations. 1.4 million monitoring blood tests in people with diabetes were also missed nationally, including over 500,000 in people with high blood glucose levels[i].

Capacity in GP surgeries needs to be drastically increased in order to restore routine care for people living with and at risk of diabetes. It must be considered a priority in the Government’s plans and funding to clear the backlog. When planning for the future, the Government and NHS England should consider how mass vaccination programmes can be delivered with minimum impact on primary care by using pharmacies and larger dedicated centres.

 

It is essential that people have access to the care and support they need to prevent serious complications. Measures to relieve pressure on GPs, such as suspending the Quality and Outcomes Framework (QOF) has created a significant barrier to care for people living with diabetes. This change risks pushing people with diabetes to the back of the queue, and therefore risks future complications being missed, so guidance must make clear that diabetes appointments should not be put on hold.

While a lack of capacity in general practice is one barrier to care, we also know that people with diabetes have delayed seeking treatment during the pandemic. A Diabetes UK survey conducted in March 2021 revealed that one third of people living with diabetes had delayed their routine appointments and 12% had delayed seeking treatment for foot problems.

We understand this to be for two main reasons. Firstly, the public are sensitive to the pressure that GPs are under and are anxious about being a burden to the NHS. Secondly, hesitancy around the risk of exposing themselves to coronavirus by attending healthcare settings, as many diabetes checks cannot be delivered remotely. The Government, NHS and charities should continue to emphasise that GP practices are available if they have a health concern. They should also work to ensure that social distancing measures and mask wearing are in place in healthcare settings and communicate that widely to reassure patients.

We are concerned that new digital triage systems risk excluding people who lack the finances, skills or ability to get online. Older people and disabled people are disproportionately affected by digital exclusion. As are people living in poverty, with 47% of offline people coming from low-income households[ii]. These groups are also more likely to be living with diabetes, and we are concerned that the focus on online healthcare will negatively impact on their care. Alternative non-digital ways to access primary care must be retained to avoid further entrenching health inequalities.

  1. To what extent does the Government and NHS England’s plan for improving access for patients and supporting general practice address these barriers?

We welcome the £250 million Winter Access Fund, which will support GPs to respond to urgent demand in the coming weeks and months. However, the scale of the backlog of routine care means that more funding is needed to expand capacity in the longer term.

As well as the millions of people with diabetes who have not received the care processes they need to manage their condition, it is estimated that between March and December 2020 more than 60,000 diagnoses of type 2 diabetes were delayed or missed because of the pandemic, this number is likely to have continued to rise as primary care has continued to be disrupted[iii]. Missed appointments and diagnoses are creating a diabetes timebomb, as people are without access to the support and treatment they need to manage their condition and prevent devastating and costly complications.

Increasing access to general practice will depend upon tackling the workforce crisis within the NHS. We support the plans to increase the numbers of GP specialty training places and are pleased to see that the number of people on the programme is rising, but more needs to be done to ensure the primary care workforce has the skills to deliver high quality diabetes care. Practice nurses carry out most of the care of people with diabetes within primary care and it is essential that they have the support they need to take on leadership roles and feel confident delivering diabetes care as it becomes increasingly complex.

Diabetes specialist nurses (DSNs) also provide essential support to GPs and other primary care staff, offering specialist advice and training across a number of practices, but the number of DSNs has been falling in recent years. The Government and NHS England should work to increase the number of DSNs and to ensure that all those working in primary care have access to specialist diabetes advice. One health care professional told us that ‘people living with diabetes do not have time to wait for primary care to skill up and we have so many other pressures on our time’. Long-term workforce planning will be essential to make sure that staff have the skills and training they need to meet the needs of everyone living with diabetes.

Plans to increase the use of digital tools in primary care could reduce the burden on staff and provide efficient ways for patients to access care. For example, during the pandemic, the NHS Diabetes Prevention Programme adapted its referral pathway, improving access through online, remote and digital routes, by enabling people to self-refer onto the programme. Barriers to accessing GP services persist, so these routes, which remove the need for a GP referral are an important tool to expedite access to the programme and save GP’s time.

However, the focus on digital solutions does risk excluding those unable to get online and in turn further entrenching health inequalities. Government and NHS England’s plans should take steps to mitigate digital exclusion and should monitor the impact of new digital pathways on health inequalities.

The Government has pledged to open 40 new community diagnostic centres in England, with the aim of giving more patients access to earlier diagnostic tests[iv]. Clarity is now needed about what tests will be available through the centres and the role they will play in diagnosing type 2 diabetes or those at high risk of the condition. Integrated Care Systems (ICS) should explore how diagnostic hubs can be used to support catching up on appointments for diabetes reviews by conducting blood tests and other checks.

4. What are the impacts when patients are unable to access general practice using their preferred method?

If patients are unable to access general practice in the way they need or want to, they may not be able to access or seek the care that they need. We are concerned that the impact would be greatest on those already experiencing the greatest burden of health inequalities: such as disabled people and people living in poverty. This also includes people with the least health literacy and could exacerbate health inequalities, leading to long-term problems. It is vital that people with diabetes attend their health checks, as this is where the early signs of complications can be detected before they become visible, and treatment can be tailored to reduce risk. Early detection of complications is essential to achieve the best health outcomes with the least invasive treatments.

In our survey of people with diabetes, a third (33%) of respondents said they want all of their appointments to be face-to-face, and another quarter (25%) want most of their appointments to take place this way. This was higher for people from deprived areas, with 36% of people from the most deprived quintile in England wanting all their appointments face-to-face, compared to 31% in the two most affluent quintiles.

Government, NHS England and local health leaders should closely monitor the impact of new triage systems and digital pathways to understand any changes to who is accessing care and at what stage they come forward for treatment, and use the data to reduce inequalities in access and outcomes.

5. What are the main challenges facing general practice in the next 5 years?

In the UK, there are 4.9 million people living with diabetes, with a further 13.6 million people at increased risk of developing type 2 diabetes. In the last 15 years type 2 diabetes diagnoses have doubled, and by 2030 1 in 10 adults will be living with the condition. The exponential rise in type 2 diabetes presents a significant challenge to general practice, as the condition is largely managed and monitored within primary care.

Diabetes patients are increasingly complex, most people living with type 2 diabetes also have at least one other chronic condition[v]. The average age of people with diabetes is also increasing and there has been a rise in people suffering with mental health conditions, for instance, people living with diabetes are twice as likely to suffer from depression and are more likely to be depressed for longer and more frequently. There is also an increase in people being diagnosed with type 2 diabetes at a younger age (under 40 years). However, those working in primary care report that they do not have sufficient access to specialist services and support. Closer collaboration between primary care and diabetes specialist teams is vital. To meet these challenges and provide high quality care to everyone affected by diabetes for the future, primary care will need sustained investment and workforce training.

Diabetes Specialist Nurses (DSNs) play a crucial role in supporting primary care to deliver care for people living with diabetes, including offering advice and training to other colleagues. Yet the number of DSNs have been falling and research in 2016 revealed that of the DSN workforce in employment at the time of the study, over 50% were within 10 years of retirement[vi]. It is concerning that alongside the pressure of rising demand and the pandemic, many more will leave the NHS and people with diabetes could suffer as a consequence.

Furthermore, the number of missed routine appointments for people living with diabetes will likely mean an increase in complications from the condition, which will put immense pressure on GPs in the next five years.

6. How does regional variation shape the challenges facing general practice in different parts of England, including rural areas?

While type 2 diabetes is predominantly diagnosed and managed within primary care, clinicians often rely on other providers for support, such as weight management services. However, a lack of clear pathways results in inconsistent care across England. Signposting and referrals to weight management and mental health services vary by region, with some general practices unaware of what services are on offer. Inconsistent commissioning means that while some regions have joined up services, others are lagging behind. In some areas GPs are not able to refer on to the specialist services that their patients could benefit from. Where national prioritisation of services is not directed to regional commissioners, such as ensuring that diabetes services and IAPT LTCs are well integrated, there is vast variation in level of care people experience.

There is also significant variation in diabetes prevalence across the country, with deprived communities and areas with high proportions of Black and South Asian people most affected. People of Indian, Pakistani and Bangladeshi ethnicity are two to four times more likely to develop type 2 diabetes and Black African and Black Caribbean people are 1.5 to 3 times more likely to develop type 2 diabetes than white Europeans. These communities develop type 2 diabetes at a younger age and more frequently at a lower BMI than White Europeans. People living in poverty in the UK are 2.5 times more likely to have diabetes at any age than the average person. Once they have the condition, those in the most deprived homes are twice as likely to develop complications of diabetes as those in the least deprived. This means that the burden of diabetes is not shared equally, and there is increased pressure on general practices in areas with an ethnically diverse population or high levels of deprivation.

We are concerned that the funding model for general practice is contributing to the inverse care law, with practices in deprived areas receiving less funding once you adjust for deprivation and the increased health needs of people in poverty. Research from the Health Foundation showed that practices serving more deprived populations receive around 7% less funding per need-adjusted registered patient than those serving less deprived populations[vii]. The Government and NHSE should review the funding model for general practice to ensure that people in disadvantaged communities, which carry the greatest burden of diabetes, do not receive an inferior level of care.

7. What part should general practice play in the prevention agenda?

For most people, general practice is the main setting in which they will engage with the NHS, the ongoing nature of the relationship between patient and their GP practice means it has an essential role to play in the prevention agenda.

The number of diagnoses of type 2 diabetes has doubled in the last 15 years and there are 13.6 million people in the UK living with an increased risk of developing the condition. Yet, we know that with the right support, up to half of type 2 diabetes cases could be prevented or delayed. The largest modifiable risk factor for type 2 diabetes is obesity, accounting for 80 to 85 per cent of someone’s risk. Supporting people to reach and maintain a healthy weight is therefore a critical part of general practice’s role in prevention.

GPs, practice nurses and other allied health professionals should be trained to offer evidence-based, non-stigmatising information and support for healthy living and weight management. It is essential that these healthcare professionals display sensitivity and understanding of the complexity of obesity, show empathy to patients, and are conscious of the causes and impacts of obesity stigma. As well as following best practice in the treatment and management of obesity within primary care, healthcare professionals should also have a good understanding of, and promote the weight management pathway in their local area.

General practice also has a crucial role to play in identifying those at high of type 2 diabetes and (in England) referring them to the NHS Diabetes Prevention Programme which has supported thousands of people to reduce their risk of type 2 diabetes in recent years. More than a third (36%) of people who attended at least one of the group-based intervention sessions demonstrated a significant reduction in weight and HbA1c. This suggests likely future reductions in type 2 diabetes incidence in those who participate in the programme[viii].

Further, the prevalence of type 2 diabetes is significantly higher in the most deprived areas. At present, a person with an income in the lowest decile in the UK would be required to spend to 75% of their disposable income to meet the UK Government’s EatWell Guidelines[ix]. Eating well and maintaining a healthy weight is essential to diabetes prevention. Diabetes UK recommend the Government consider the importance of funding GP link workers who can signpost to financial help services to ensure that people can maximise their income. Link workers have also been shown to increase positive physical changes including weight loss, increased physical activity and mental health benefits, all of which are essential to preventing conditions, including type 2 diabetes[x].

Prior to the pandemic, 10 per cent of the NHS budget was spent on diabetes, the majority of which was spent on treating complications, which are largely avoidable through better care and prevention. General practice therefore has an important role to play in secondary prevention, to reduce the risk of diabetes complications. This includes offering regular checks and ensuring patients have a thorough understanding of their condition. One Diabetes Clinical Lead who is currently practicing, told us that a shift in approach is needed within general practice ‘moving away from firefighting and instead using more practice nurse time on education and treatment of patients to prevent complications down the line’.

The recent decision to suspend the Quality and Outcome Framework (QOF) for general practice and the Investment and Impact Fund (IIF) for Primary Care Networks for the remainder of 2021/2022 is of great concern. Diabetes UK is concerned that removing these incentivisation schemes which support delivery of quality routine care for people living with long term conditions, such as diabetes, risks leaving people with diabetes without access to the necessary care and support to stay well. 

Diabetes UK understands the importance of the Covid-19 vaccination programme and applauds the NHS for its successful rollout. However, we are disappointed that there has been not been sufficient political focus and capacity planning to ensure that rollout of the booster programme takes place alongside recovery of routine care.  

We call on the Government and local health system leaders to urgently set out how routine care for people living with or at risk of long-term care will be prioritised following the rollout of the booster vaccination programme. In the meantime, it is paramount that local health leaders ensure those most in need are able to access care, now and in the future.

8. What can be done to reduce bureaucracy and burnout, and improve morale, in general practice?

General practice was under immense pressure before the pandemic and this has only intensified with the additional responsibility of the vaccine programme and the backlog of patients who have not been seen over the last 21 months.

Closer working across multi-disciplinary teams in primary care networks (PCN) and local specialist teams, including diabetes support teams (DiaST) where they exist is essential to reduce the bureaucracy and improve morale in general practice. This includes setting clear responsibilities, creating communication channels and sharing education and training to avoid duplicating work and offering joined up care for patients.

Closer working between primary and secondary care would also be helped by linking up data sets, which would mean the burden of repeated tests and patients being asked questions in multiple appointments is reduced. This would benefit both those working in general practice and people living with diabetes.

Greater collaboration and clearer boundaries of responsibility between primary and secondary care will also reduce bureaucracy and improve diabetes care. One healthcare professional told us that they were concerned by early signs that a two-tier system is developing, where those managed in secondary care could receive better care than those managed in primary care. Investing in staff training and collaboration between hospitals and GP practices will be critical to delivering excellent care in both settings.

9. How can the current model of general practice be improved to make it more sustainable in the long term? In particular:

c. Has the development of Primary Care Networks improved the delivery of proactive, personalised, coordinated and integrated care and reduced the administrative burden on GPs?

It is well known that we still, despite many years of progress and concerted effort, have unacceptable variation in the quality of diabetes care across England (and the UK). So much of that care is delivered through primary care and depends on the primary care workforce having knowledge, skills and the support of diabetes specialists when needed. COVID-19 has brought disruption to the whole system of diabetes care, bringing both a need for renewed effort in ensuring everyone receives the care they need to live well with diabetes and an opportunity to address the inequality that exists for many communities. The introduction of Primary Care Networks (PCNs) has created a new mechanism of support for primary care. It provides an opportunity to share good practice, upskill and develop the capacity of colleagues in primary care more directly. It also provides a vehicle to allow specialists in diabetes to offer support.

While progress has been disrupted by the pandemic, we welcome efforts to ensure high quality diabetes care across the board, including the formation of DiaSTs (Diabetes Support Teams). PCNs should now do more to reach underserved populations in their localities such as people with frailty, young adults, people of Black and Minority Ethnic (BAME) background, people with type 1 diabetes and people with learning difficulties. Along with others in the sector, we have set out a number of recommendations in the Best Practice in the Delivery of Diabetes Care in the Primary Care Network guide.

d. To what extent has general practice been able to work in effective partnerships with other professions within primary care and beyond to free more GP time for patient care?

Diabetes specialist nurses (DSNs) enable specialist care to be delivered within the primary care setting and offer expert knowledge to support and train the whole general practice team. When based outside of a hospital, DSNs often work across a number of GP practices and represent an effective partnership within primary care that improves patient experience and relieves pressure on GPs. At Diabetes UK, we are concerned by research showing that over 50% of DSNs are due to retire in the next 10 years. It should be a priority to recruit and train nurses in these roles so that they can continue to support the growing number of people with diabetes and the non-specialist workforce.

As detailed above, the NHS Diabetes Prevention Programme adopted an online self-referral system using the Diabetes UK Know Your Risk tool during the pandemic, removing the need for a GP to refer a patient to the programme. This is a successful example of working together to remove barriers for patients and to reduce the burden of work on colleagues in other areas of the NHS. Direct access to nationally commissioned online diabetes education was also introduced recently.

Conclusion

By 2030, we estimate that 1 in 10 adults will be living with diabetes, the majority of whom will have type 2 diabetes. General practice must be sufficiently resourced and supported to provide the high level of care that everyone living with diabetes should have to enable them to live well and prevent them developing devastating and costly complications.

Nurses are the lynch pin of diabetes care in primary care, supported by a multidisciplinary team including doctors, pharmacists and dietitians. The Government and NHS England should invest in and train this workforce to make sure there are enough health care professionals with specialist knowledge of diabetes to meet the rising demand and complexity within diabetes care in every local system.


[i] D. Holland et al., Assessment of the effect of the COVID-19 pandemic on HbA1c testing: implications for diabetes management and diagnosis, EASD abstract 30, accessed here. 

[ii] UK Consumer Digital Index 2019

[iii] Carr, Matthew, et al. (2021), ‘Impact of COVID-19 on diagnoses, monitoring, and mortality in people with type 2 diabetes in the UK’, The Lancet Diabetes & Endocrinology, 9(7), p. 413–415

[iv] 40 community diagnostic centres launching across England - GOV.UK (www.gov.uk)

[v] The comorbidity burden of type 2 diabetes mellitus: patterns, clusters and predictions from a large English primary care cohort | BMC Medicine | Full Text (biomedcentral.com) [Accessed 10 December 2021]

[vi] Diabetes UK (2016), Specialist Nursing Workforce Survey.

[vii] Level or not? - The Health Foundation [accessed 9 December 2021]

[viii] : Jonathan Valabhji, Emma Barron, Dominique Bradley, et al Early Outcomes From the English National Health Service Diabetes Prevention Programme, Diabetes Care 2020;43:152–160 |

[ix] Food Foundation, (2018) Affordability of the UKs EatWell guide

[x] Moffatt S, Steer M, Lawson S, et al., Link Worker social prescribing to improve health and well-being for people with long-term conditions: qualitative study of service user perceptions BMJ Open 2017;7:e015203. doi: 10.1136/bmjopen-2016-015203

 

Dec 2021