Health and Social Care Bill

Memorandum submitted by Diabetes UK (HRS 41)

About Diabetes UK

Diabetes UK is the leading charity for over 3.5 million people in the UK with diabetes, funding research, campaigning and helping people living with the condition. Our mission is to improve the lives of people with diabetes and work towards a future without diabetes.

Summary

The Future Forum and government response has addressed some of the issues we raised to a degree; however, there was very little time to question and discuss the intentions behind the amendments and the likely impact on NHS services for people with diabetes.

A primary concern for Diabetes UK was the impact on integration of services as well as meaningful engagement both of the individual and the collective patient voice. In this regard, we accept that much of the detail around implementation will not be on the face of the Bill, but in secondary legislation, rules, regulations and guidance. This needs to be subject to meaningful consultation and robust scrutiny.

Diabetes UK is subsequently left with residual concerns which are outlined in this evidence. We want to see the listening continue as the Bill goes forward, in particular, we look forward to sufficient time and space to work with government and others on future secondary legislation, so that the very best outcomes for people with diabetes are achieved.

1. The role of the Secretary of State – amendments 54 to 56

1.1. Diabetes UK welcomes clarity that services must be free of charge, but is concerned that the door is left open for charging in the future.

2. Clinical advice and leadership - amendments 71, 72, 112, 113, 114 and 135

2.1. Diabetes UK acknowledges that the group of amendments regarding multi-disciplinary aspects of commissioning and leadership, requirements to consult, integration, choice, reporting on annual performance and on patient involvement strengthen the original Bill.

2.2. We remain concerned at the complexity of structures and the transition period. We question where responsibility and accountability lie for ensuring the delivery of all the key elements of the diabetes care pathway in a co-ordinated manner and if things go wrong, where do people with diabetes go to get things put right?

2.3. Diabetes UK is pleased that national clinical networks will remain in place. Local and regional diabetes networks already in existence must be strengthened, developed and supported by commissioning groups to ensure appropriate engagement of clinicians and people with diabetes to advise and monitor integrated diabetes care is being delivered and to support improvement. In many areas, these networks are falling apart and need to be rebuilt to inform local commissioning and co-ordination of diabetes care.

2.4. Amendments 71, 72, 112, 113 and 114 - as stated in our response to the Listening Exercise, a key step to support Clinical Commissioning Groups in commissioning diabetes care would be to use the NHS Diabetes Commissioning Resource and its associated information. Whilst we accept this cannot be included on the face of the Bill, we seek assurance that it will be included in subsequent guidance on commissioning.

2.5. Amendments 71, 72, 112, 113 and 114 - whilst Diabetes UK accepts we cannot ask for specific representation of diabetes on every commissioning board, there needs to be mechanisms to ensure commissioning and review of all population health needs and services; for example, strong engagement with local networks, community groups and use of data to inform gaps in care. There must be an identified list of functions that representatives on commissioning boards cover including screening, education of clinicians, care delivery and health promotion.

2.6. Amendment 135 – the annual performance assessment should include a requirement for robust information collection essential for mapping trends and hotspots. Diabetes UK wants mandatory participation in national clinical audits & data submission to the National Diabetes Audit.

3. Research and innovation – amendments 115 and 116

3.1. C/f amendment 135 - Diabetes UK wants clinical audits included as part of research and innovation. A more diverse market of providers will require robust data collection systems to ensure that commissioners have access to clear information about the quality of services available to patients from each provider.

4. Public accountability and patient involvement

4.1. Amendments 189 and 190 Diabetes UK acknowledges that Health and Wellbeing Boards will be required to involve the Local HealthWatch, the local authority and people who live and work in the area when preparing Joint Strategic Needs Assessments and Wellbeing Strategies.

4.2. Greater clarity is needed around how services will be integrated to benefit people with diabetes. They need to understand how services will fit together on the ground, how they can access care and who will ultimately be responsible for the delivery of their care plan. It is essential that people with diabetes get the right care, from the right professional at the right time. Integration of diabetes care is described in the document Commissioning Diabetes without Walls (introductory document to the NHS Diabetes Commissioning Resource), and the needs of people with diabetes in relation to how they wish to access and receive services has been explored in our work around developing supported self management.

4.3. Amendments 138 to 140 and amendment 134 Annual performance assessments and clinical commissioning groups’ annual reports must contain real data that reflects trends in diabetes care and the impact of diabetes strategies. Diabetes UK wants robust information collection to help ensure accountability. It should be mandatory for all primary and secondary care organisations to participate in national clinical audits and submit data to the National Diabetes Audit.

4.4. Amendments 95 and 98 Strengthening governance arrangements of clinical commissioning groups - Diabetes UK acknowledges that this element of the Bill has been strengthened, however, we need to see the detail for how this will work in practice and ensure that patient and public involvement is not tokenistic but real involvement of patients and public and that lay roles are respected and valued. The process of selection for involvement needs to be open to scrutiny.

4.5. Amendments 64, 150 and 199 We acknowledge the new patient involvement duty for Monitor, but remain concerned that there is still a focus on introducing competitive providers and this does not guarantee quality or integration.

4.6. Amendments 68 to 70 and 109 to 111 Diabetes UK has recently completed a pilot study in three PCTS assessing new ways of involving users in decision making about care and developed a toolkit for commissioners and providers. Effective patient involvement will need time, investment and skills to be deployed at all levels.

4.7. We remain concerned about accountability in commissioning and the impact this may have on other nearby local services; for example, where services are physically moved out of a locality making it harder for patients to access healthcare as a result of commissioning decisions.

4.8. The care pathway for people with diabetes requires access to a variety of services and commissioning bodies need to take a holistic approach to service provision. We would want the authorisation process to include scrutiny of the planned care pathway for people with diabetes. There are nine key healthcare checks a person with diabetes should receive on an annual basis, however the National Diabetes Audit published on 29 June 2011 found that only 50% of people with Type 2 and a third of people with Type 1 diabetes are getting these checks. This is vastly increasing their risk of developing complications. It is not clear how new commissioning processes and care pathways will address these issues.

4.9. The organisations in transition from LINk to local HealthWatch, including pathfinders, need national support to become a respected and powerful part of the new structures. Diabetes UK is concerned that HealthWatch England is not due to be established until October 2012. This compares unfavourably with support to emerging clinical commissioning groups, where the National Commissioning Board will be established in October 2011.

5. Choice and competition – amendments 148, 149, 151, 153, 154, 155, 158, 159, 160 and 161

5.1. The ultimate decision to embark on any form of treatment rests with the individual with diabetes who requires a full understanding about the treatment and its possible side effects and the opportunity to consult with relevant healthcare professionals in making the decision as part of a team. These concepts are clearly defined and explored in the personalised care planning processes explored with the Diabetes Year of Care Project.

5.2. Diabetes UK acknowledges the amendments around the role of Monitor but maintains that introducing competing providers and competition does not guarantee quality or integration of services. Wherever care is provided, it needs to be integrated and commissioning for pathways of care will be important.

5.3. There needs to be a move away from competition being about choice from a number of competing services to joined-up and integrated networks of care which allow patients to understand the options for patterns of care which are open to them.

5.4. It needs to be recognised that choice must be about options about the type of care available, not about choice of competing providers, which is how choice is widely seen and promoted by the government.

5.5. Choice should include access to specialist nurses and psychological/emotional support for people with diabetes. Diabetes UK has evidence that this choice is being removed through reorganisations and redeployment. We believe that there is a high risk that this expertise, once lost, will be lost to the profession for good. Diabetes UK’s DSN workforce report found evidence that these specialist posts are being frozen, or are not being replaced in order to assist with or contribute to savings plans. Our report with NHS Diabetes on the need for provision of access to high quality emotional and psychological support for people with diabetes makes a number of recommendations to ensure that these are put in place and why they are needed.

5.6. Personal health budgets are not the answer to choice for people with diabetes as they are not able to cope with the unplanned complications of diabetes. At the moment, the issue is not about choice, but whether services are accessible or even there in the first place. Some people with diabetes simply don’t have the local services and care they are entitled to, as evidenced in the National Diabetes Audit findings regarding the number of people receiving all of the key care processes. Data published in June 2011 showed that just 32% of people with type 1diabetes and 53% of people with type 2 diabetes had received all nine key healthcare checks. Ensuring everyone that needs to, has access to good quality, local services and the ability to discuss options for care to meet their needs with their health professional is what people with diabetes tell us they want, rather than being able to shop around competing providers.

6. Promoting better integrated services – amendment 117

6.1. Diabetes UK acknowledges the strengthening of the integration duty for all bodies which is essential to care for people with diabetes.

6.2. Diabetes UK is concerned at the complexity of structures at primary, secondary and community level. It may be confusing for patients about how to access care and leaves responsibility and accountability blurred.

6.3. There is a lack of detail in the Bill about how care pathways will work in practice. The diabetes care pathway requires access to a variety of services and commissioning needs to take a holistic approach. We remain concerned about the risk of fragmentation, inconsistency of information or duplication and that some people with diabetes will fall through gaps. Our initial responses to Liberating the NHS and its consultation documents highlighted the need for integrated services that provide high quality care for people with diabetes. The introductory document to the NHS Diabetes Commissioning Resource, Commissioning Diabetes without Walls, describes what is needed to ensure diabetes services are commissioned in an integrated and accessible way that genuinely reflect local levels of need.

July 2011