Health and Social Care Bill

Memorandum submitted by Diabetes UK (HS 51)

Summary

1. 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.

2. Diabetes UK welcomes the Government’s aim for a patient centred NHS. Key to this is the delivery of integrated care, in which a person with diabetes has access to the multidisciplinary skills of generalists, specialists, allied health and other professionals in a timely and co-ordinated manner. Diabetes UK is concerned proposals within the Bill could undermine this.

3. We believe the Bill should be strengthened to ensure:

3.1 integrated working and service provision,

3.2 people with diabetes, and the multidisciplinary range of professionals with expertise in diabetes care, are involved in the commissioning of diabetes services,

3.3 there is increased accountability of commissioners, and in particular for integrated working,

3.4 people with diabetes have access to the range of skilled professionals they require for their care,

3.5 participation in national clinical audits are made mandatory,

3.6 standards of quality are more strongly embedded within the Bill.

1. Continuity of diabetes care and risks of fragmentation

4. A person living with diabetes can be in contact with public health, primary and specialist care. For example, through a risk assessment that could lead to an intervention to diagnose Type 2 diabetes, being supported to manage the condition, having reviews and screening for complications and for some the management of these complications.

5. We have concerns that the proposed structural reform which will see different aspects of diabetes care commissioned by a range of commissioners could further fragment the way in which services are provided.

6. Core principles of integration include:

6.1 A joined up, seamless interaction of the person with the various professionals and parts of the system they are engaged with.

6.2 All relevant stakeholders including people with diabetes, carers, and the multidisciplinary range of professionals that work with them, are involved and inform the commissioning of an integrated model of care.

6.3 All professionals involved in the care of the person are working together, communicating effectively and aware of each others roles and responsibilities.

6.4 Local protocols and agreed referral pathways for the management of different aspects of diabetes care are implemented in accordance with national guidelines.

6.5 Effective IT systems that can support appropriate sharing of information between the different professionals supporting a person with diabetes are in place.

6.6 Involvement of the person with diabetes in their care through care planning to support individually tailored care; and enhanced communication with individuals through access to their health records and tools to support self management

6.7 Effective clinical leadership, service user involvement and being innovative when planning services across organisational boundaries. 1,2

7. When diabetes services are not integrated we know this leads to problems with:

7.1 communication between providers

7.2 duplication of efforts, for example repeating tests, which can delay care provision

7.3 inconsistency in the advice and information provided to people with diabetes

7.4 People with diabetes having to repeat the provision of information about themselves and their needs to different providers

7.5 People with diabetes not knowing which part of the system has responsibility for delivering a particular part of their care

8. We know from surveys of people with diabetes that continuity of care, regular access to care, and better liaison between different providers, for example primary and specialist care providers, are key improvements they would like to see to their care. 3

9. While there are some requirements within the Bill for integrated and partnership working, and for consortia and the NHS Commissioning Board to seek appropriate advice from professionals, Diabetes UK questions the strength of these duties, and the degree of accountability within the new system to ensure this occurs.

10. Diabetes UK believes the duties to encourage partnership working placed on the NHS Commissioning Board and Health and Wellbeing Boards should be strengthened to duties to ensure this occurs. These bodies would then be held accountable for discharging this duty. As the ultimate goal of integrated working is the realisation of integrated services, this too should be recognised within these duties.

11. As commissioning consortia, local authorities and the NHS Commissioning Board will all have responsibility for commissioning services; each should have an explicit duty placed upon them to commission integrated services for people with conditions, like diabetes and those at risk of developing it, whose needs will span all three commissioners.

12. Diabetes UK believes a "duty to commission integrated services" would complement the duties on the NHS Commissioning Board and Health and Wellbeing Boards with regard to promoting partnership working to this end, creating further accountability for achieving this, within the system.

13. Integrated care and partnership working between all key stakeholders is crucial to ensure that diabetes services are commissioned in a way which means people with diabetes get the right care, from the right professional and at the right time.

14. Networks, such as diabetes networks bring together stakeholders with relevant expertise to inform the commissioning and design of diabetes services within a locality. These stakeholders include people with diabetes and their carers, representatives of third sector organisations, multidisciplinary diabetes specialists, primary care, pharmacy, ambulance services, public health, social care and education.

15. National recommendations recognise the benefits of networks in supporting the commissioning and delivery of integrated care.4 In particular at a time of structural upheaval they can be a force for stability and continuity.

16. Diabetes UK would like the "duties to seek advice" in Sections 19 clause 13 G and Section 22 clause 14O strengthened to become "duties to involve" multidisciplinary professionals and patients.

17. The duties should be further amended to require the involvement of both multidisciplinary professionals and patients with expertise in the condition being commissioned for, and the relevant networks.

18. Involvement should reflect all stages of a commissioning cycle, from the planning of commissioning arrangements through to the monitoring of the quality and effectiveness of the services commissioned.

19. Conflicts of interest have been identified within the legislation, for example between roles of commissioning and provision.

20. At present the Bill states that regulations, "may in particular, impose requirements relating to (b) the management of conflicts between the interests involved in the commissioning of services and the interests involved in providing them."

21. Diabetes UK is concerned that these conflicts of interest will work to the detriment of partnership working and ensuring the integration of care as practitioners who are potential providers of services will also have the power to commission these services.

22. Furthermore the duties to promote competition raise concerns about the impact this will have on the delivery of integrated services, and on commissioners and their ability to work collaboratively with other colleagues in the design and commissioning of services.

23. This creates a possible risk that GP commissioners will not be in a position to work with specialist colleagues to design and deliver a comprehensive service. It also places significant challenges on organisations to work to retain business rather than working in the best interest of patients.

24. Integrated working with all relevant stakeholders is essential to ensuring services are commissioned in accordance with the needs of patients.

25. Diabetes UK recommends the Bill is strengthened in relation to these points, with explicit safeguards relating to patient safety, continuity of care, and the delivery of integrated, effective and high quality services.

26. The Bill makes some provision for the merger and dissolution of organisations.

27. Diabetes UK is seeking greater clarity regarding what safeguards are in place to mitigate against the potential for continual small scale reform and the impact this will have on integrated care, partnership working and continuity of care, if for example a consortia decides to split after a short period.

2. Standards of care to deliver quality

28. While some provisions within this Bill and prior legislation will enable a degree of assurance and monitoring of standards of care, Diabetes UK questions whether these go far enough in ensuring that high quality care will be available to all people with diabetes at a local level.

29. With an increasing availability of a range of service providers in the new system, it is vital safeguards are contained within the Bill to ensure people with diabetes can be assured of the competency of those providing their care. Diabetes UK questions whether CQC registration, and the duties placed on both the NHS Commissioning Board and the GP Consortia as to improvement in quality of services, will go far enough in ensuring people with diabetes have access to the full range of skills across diabetes care pathways, including specialist services.

30. Diabetes specialist teams have a key role within an integrated model of high quality diabetes care, not only in providing direct clinical care but also in providing training and support to generalists. Diabetes specialist teams should comprise of physician, nursing, podiatric, psychological, and dietetic diabetes specialists. Furthermore there will be liaison and potentially the delivery of joint clinics with specialists managing the complex co-morbidities of the condition. People with Type 1 diabetes, children and young people, pregnant women and those with long term complications are examples of individuals who are generally supported by diabetes specialist team members. 5

31. A key priority identified by people with diabetes is access to appropriately trained professionals to meet their needs:

"…by appropriately trained and competent staff who can prove they are up to date with all advances in tier chosen field and have excellent communication skills."

"Properly trained clinicians available who are regularly updated on latest treatments and care."

32. Diabetes UK urges the government to strengthen the Bill to ensure that specialist services will be available to provide the services required of them.

33. While there are questions regarding whether the NICE Quality Standards will be comprehensive enough and cover the right areas, they have been given a prominent role within government plans.

34. Diabetes UK believes the role of the NICE Quality Standards should be strengthened within the legislation and that the strengthened duty is explicitly extended to commissioning consortia. If included as part of Section 22 ,clause 14 L, this would also ensure commissioning consortia must explicitly explain, as part of consortia plans, how they will discharge their duty with regard to the NICE Quality Standards (Section 22 14Y (page 34).

3. Mandating National Clinical Audits

35. In order to ensure accountability, particularly in light of proposed NHS structural reform, robust information regarding the quality of care is required to monitor services and improve them, and to provide patients with reliable information to support them both to make choices about their care and to hold services to account.

36. National Clinical Audits, such as the National Diabetes Audit (NDA) for adults and children and young people utilise thorough methodologies and are exemplars in quality data collection and analysis, leading to service improvement. The importance of national clinical audits and their extension has been acknowledged by the Government in the NHS White Paper.6

37. The NDA also provides an excellent foundation for the Government’s developing programme of work surrounding outcomes.

38. Diabetes UK recommends section 242 (clause 1 (a) (page 200) is amended to require the process of information collection and provision to be undertaken through a robust audit process such as those of national clinical audits.

4. Information Accreditation

39. Diabetes UK is seeking clarity regarding the remit of the Information Accreditation scheme in Part 9 Chapter 2 247, and whether this will extend to providers of information for patients, such as the voluntary sector.

40. The voluntary sector is a critical source of patient information and if the Information Accreditation scheme is to apply to this role or sector, the Government must ensure the administrative, regulatory and financial burdens do not prohibit the sector from participating. Concerns about the current Information Standard scheme include the costs to information providers of being involved, the need for greater promotion of the scheme to healthcare information users, and the need for better integration with existing programmes such as NHS Choices and Information Prescriptions.

41. This is particularly important in an environment where patient choice is being extended and generalist organisations such as Local Healthwatch are expected to facilitate the role of information provision to support choice.

5. Patient Involvement

42. "No decision about me without me" and increasing patient choice each anticipate that people with long term conditions will be involved in their own care.

43. For people with diabetes supported self management can help a person reduce their risk of developing the devastating long term complications of the condition including; heart disease, stroke, amputations and blindness.7

44. Diabetes UK believes support for self management such as care planning, information, education and emotional and psychological care and support, must all be available in order to support people with diabetes to self manage and participate in informed decision making around their care.7

45. This is supported by comments Diabetes UK received for its NHS White Paper consultations where the description of quality care or of what people would look for to inform their choice of service, included:

"Good quality of care is tailored to the individual"

"…high quality care is supporting the patient and family to enable them to manage the condition efficiently and independently, so that their quality of life is as unaffected as possible and they are able through good diabetes management, to minimise the risks of developing complications of diabetes."

"Good understanding and education is the key to good quality of life. Education is often talked about but "ignored" and not tailored to the individual's need and local communities."

"Structured education to help manage own health condition"

"what education can I access to improve that understanding; are the any self-help groups available to me; Are ALL types of treatment and medications available to me, so that I can, with information make my choice of what to use."

46. We know from surveys of people with diabetes, and of diabetes care providers, there is great inconsistency in the availability of services to support self management. For example, only 36% of people with diabetes responding to our survey said they had attended a course to help them manage their diabetes since they were diagnosed 3

47. Furthermore supported self management forms part of the current QIPP agenda for long term conditions, which recognises that supporting people with long term conditions to self manage demonstrates both high quality care and the potential for long term savings through better condition management. 8

48. Diabetes UK supports recommendations to define a patient’s involvement in their own treatment and care. We recognise there is an existing definition contained within The Health and Social Care Act 2008 (Regulated Activities) Regulations 2010 Part 4 Section 17 2 (e), which aims to underpin the right for people to manage their own care.

49. While this provides a good foundation we believe this definition can be built upon and strengthened within this Bill, with the NHS Commissioning Board and Consortia required under their duties to "provide services to support people to self manage their long term conditions".

Local Healthwatch

50. Local Healthwatch are to be tasked with providing advocacy, supporting people to make choices, reporting issues for investigation to Healthwatch England and promoting user involvement.

51. Diabetes UK continues to have concerns, raised in our submission to the White Paper, about the capacity and skills that will be required to deliver on all these functions and what safeguards will be in place to ensure these roles are undertaken effectively.

52. We also question how decisions will be reached as to what is referred up to Healthwatch England when problems are identified and reported to local Healthwatch.

53. People with diabetes have fed back their views on the need for local Healthwatch to engage with them;

"…use expert patients. We live with our conditions and are aware of

what’s important"

"…ensure there is a good cross section of the population…"

54. Diabetes UK would like more clarity on the requirements which will be put in place to ensure that Local Healthwatch effectively work with and involve service users representing the needs and concerns of specific conditions.

1. http://www.diabetes.org.uk/Professionals/Publications-reports-andresources/

Reports-statistics-and-case-studies/Reports/IntegratedCare/

2. http://www.diabetes.nhs.uk/commissioning_resource/

3.http://www.diabetes.org.uk/Professionals/Publications-reports-and-resources/Reports-statistics-and-case-studies/Reports/At-a-glance-Diabetes-UK-Survey-of-People-with-Diabetes-and-Access-to-Healthcare-Services-2009/

4. Teams without Walls: The value of medical innovation and leadership’ (Report of a Working Party of the Royal College of Physicians, the Royal College of General Practitioners and the Royal College of Paediatrics and Child Health) (2008)

5. http://www.diabetes.org.uk/Professionals/Publications-reports-and-resources/Reports-statistics-and-case-studies/Reports/Commissioning-Specialist-Diabetes-Services-for-Adults-with-Diabetes---Defining-A-Specialist-Diabetes-UK-Task-and-Finish-Group-Report-October-2010/

6.http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_117353

7. http://www.diabetes.org.uk/Professionals/Publications-reports-and-resources/Reports-statistics-and-case-studies/Reports/Supported-self-management/

8. http://www.kingsfund.org.uk/applications/site_search/?term=How+to+deliver+high-quality%2C+patient-centred%2C+cost-effective+care+consensus+solutions+from+the+voluntary+sector&searchreferer_id=21445&submit.x=39&submit.y=7 http://www.diabetes.org.uk/Professionals/Publications-reports-and-resources/Reports-statistics-and-case-studies/Reports/Childrens-Charter-for-Diabetes/

February 2011