Select Committee on Health Written Evidence

24. Evidence submitted by Diabetes UK (PPI 100)

  Diabetes UK is one of Europe's largest patient organisations. Our mission is to improve the lives of people with diabetes and to work towards a future without diabetes through care, research and campaigning. With a membership of over 170,000, including over 6,000 health care professionals, Diabetes UK is an active and representative voice of people living with diabetes in the UK.

1.   What is the purpose of patient and public involvement?

  1.1  Patient and Public Involvement is integral to achieving responsive, relevant healthcare services for all patients. Involving users in local planning and decision-making is the only way to create a health service built around the needs of those who use the service, rather than the needs of the system. User involvement supports services and practitioners by providing them with access to information about the real experiences of the people who use the services. Involvement of users in the design, planning, delivery and monitoring of local diabetes care services is central to achieving the NHS Plan vision, to "reshape the NHS from a patient's point of view"1 It is essential for people with long-term conditions to feel empowered as effective control relies on self-management for good clinical outcomes. People can only self-manage in the context of services that work for them. Therefore, the needs of people living with diabetes should be central to every element of local decision making to meet political aspirations, improve legitimacy and ultimately to ensure a better service.

2.   What form of patient and public involvement is desirable, practical and offers good value for money?

  2.1  Involvement of people with diabetes and their carers should be at every level of decision making:—Strategic, operational and practical. It is about listening, openness and dialogue between those managing, providing and using the service. Involvement is essentially about relationships. Activity that enables dialogue between all stakeholders has to be included in agendas,2 through informing, consultation and partnerships.3 Representation and supported involvement of people living with diabetes, for example through Diabetes Networks, PCTs and similar structures, provide mechanisms for considered, comprehensive and informed views about how needs can be appropriately met.4 The User Representative role has been developed to ensure the voice of people with diabetes is present to ensure diverse and broader knowledge, experience, and perspectives are represented. User Representatives are there to support the process of engagement but are not ultimately responsible for it. Wider consultation should also be undertaken.5

  Involvement is needed to influence local service delivery to improve:

    —  partnership working through building and sustaining relationships

    —  accountability and legitimacy for decisions made

    —  relationships between the users and staff with clear expectations6

    —  feedback and evaluation about service provision to help improve and shape future provision

    —  empowerment of communities and reduction of inequalities7

    —  experiences of those who use services leading towards improved health outcomes.

  2.2  The process of involving people with diabetes in planning diabetes services should be resourced, monitored and evaluated. This is to ensure mechanisms for involvement are working effectively and that changes to diabetes care have been made that reflect the input of service users.8

  2.3  People with diabetes are central to all aspects of the work of Diabetes UK, making us a leader in the field. We have a strong representation in our governance structure of lay representatives, with 60% making up our Advisory Council. The Advisory Council is involved in shaping the organisation's strategy and elects the Board of Trustees. Other forms of user involvement include a secure online discussion site where a wider number of users can be consulted, form focus groups, and take part in surveys, all of which inform a variety of the organisation's work streams. We have a reader's panel to provide feedback on the content of our membership magazine, Balance and people with diabetes also sit on our research committee and express their opinions on the value of research to people with diabetes. In the case of borderline decisions, it's the lay members of the Committee who have the final say because it's the money of members of the charity that funds research. Members of our voluntary groups also undertake various activities including providing peer support to others with diabetes and their supporters, and disseminating Diabetes UK information.

  2.4  Diabetes UK receives funding from the Department of Health to implement a service user involvement project, which has been running for four years. This project aimed to support the implementation of the National Service Framework for Diabetes, with regard to users becoming directly involved in the planning, development and delivery of local health services via Diabetes Implementation Groups and Managed Diabetes Networks. Diabetes UK has trained 167 user representatives at 19 training days held during the course of the project.9

  2.5  Diabetes UK has also developed guidance for PCTs regarding how they can effectively recruit and support User Representatives, which can be accessed at

  2.6  The National Diabetes Support Team (NDST) has recently announced that it is funding a new project to be carried out by Diabetes UK in partnership with London Metropolitan University. The aim of the work is to ensure that people with diabetes are involved in everything that impacts on their health care. They will be able to contribute to policy development at the Department of Health and also at a local level to diabetes networks and service delivery. It will focus on engaging "hard to reach groups" eg ethnic minority communities, as well as children and young people and their carers/parents. The new work will, among other things, link with existing user involvement organisations, collate examples of good practice and work towards providing training for healthcare professionals.

3.   Why are existing systems for patient and public involvement being reformed after only three years?

  3.1  Diabetes UK responded to the consultation "A Stronger Local Voice" published by the Department of Health which aims to create a stronger local voice in the development of health and social care services. In our response we recognised that significant improvements need to be made to enable the general patient and publics to be involved in local service delivery. We expressed our disappointment that existing routes for involvement are to be abolished and new ways proposed, rather than attention being put into strengthening and adapting those already in existence. We have had feedback from users and staff that they find the NHS and its involvement mechanisms confusing. More changes will make it even more difficult to encourage and support users to have their say.

  3.2  These new proposals will be unsettling for a large number of users currently involved and could result in a feeling of disenfranchisement of those who are already closely involved in Patient Forums. Appropriate and supportive communication, valuing the input already put into developing Patient Forums is absolutely necessary for local engagement and involvement to increase.

  3.3   The key areas to be addressed through the new structures are:

    —  The skills, passion and knowledge of users already working with PCTs and SHAs must be retained for the newly proposed systems to work.

    —  Careful and widespread communication about systems, funding and support opportunities needs to occur across existing community and local voluntary groups, particularly focusing on what their role is, how it works and how people can feed into them.

    —  A key role of LINks should be to network and engage with existing community and voluntary groups to facilitate the exchange of views and comment.

    —  Flexible opportunities for being involved need to be developed. Many people are keen to be involved in local service developments, but prefer not to attend meetings.

    —  Emphasis must be placed on training practitioners and managers working directly with involved users and for staff and elected members who will be the recipients of user views.

    —  Planning, commissioning, monitoring and evaluation of diabetes services must involve volunteers, user representatives, carers, healthcare professionals and campaigners directly affected by diabetes. Models of good practice already exist where managed diabetes networks, involving specialist, primary and community staff working alongside people with diabetes are planning and developing local diabetes services.

    —  Efforts must be focused on proactively seeking and benchmarking patient access and experiences. Information to inform service delivery and choices must be more widely accessible and support to understand it made available.

4.   How should LINks be designed?

  4.1  Remit and level of independence

  4.1.1  LINks should contribute to the agenda allowing people with diabetes and other users to input into services. The work should support the implementation of the National Service Framework for Diabetes by facilitating users direct involvement in the planning, development and delivery of local health services via Diabetes Implementation Groups and Managed Diabetes Networks.

  4.2  Membership and appointments

  4.2.1  Sound governance arrangements need to be established to ensure that LINks are managed appropriately and to ensure that all members of the local community wishing to be engaged in health service planning, commissioning and monitoring/regulation are able to do so. Recruitment of members needs to be supported by a transparent system detailing how implementation will happen, sustained and evaluated. Particular efforts should be made to ensure all sections of the community are represented. Transparency will be supported by having elected boards to ensure consistency with other policies for accountability and representation with Foundation Trusts.

  4.2.2  Clear role descriptions should be developed and be the basis upon which individuals are informed of what they have to do and the means by which they are recruited. In order to ensure accountability of management and governance structures, local area elections should be considered, where individuals wishing to be involved in the management and governance structures are chosen by the entire local community on the basis of their case made for standing. Paid staff will be required to undertake the administrative and management functions to ensure that the LINks are successful.

  4.2.3  As well as commissioners being required to respond to the community and provide feedback on the results of consultations, PCTs and providers should also be required to put in place user involvement strategies defining what and how they are going to involve patients and the public. How strategies are communicated to the local community should depend on local circumstances. For example, circulated to all houses in the local community, seeking comment, feedback and expressions of interest about how they could be involved, and through local voluntary and community groups. Involvement in LINks should not be solely based on membership as not all people wanting to get involved will want to "join".

  4.2.4  Past experience has shown that services can find it difficult to involve black and minority ethnic communities, so it is important that there is a willingness to go out to meet individuals. For example: in community centres, places of worship, festivals and shopping areas; healthcare workers, especially link workers and those from the same ethnic background, should always be drawn on for their expertise and contacts; advertise the position/s in places people visit on a regular basis, such as shops, temples and mosques. Diabetes UK has developed a toolkit designed to help engage ethnic minority communities

  4.2.5  The following principles should be applied in the development of new systems:

    —  Initial information should be provided about what is involved, what they are being asked to do, availability of administrative support and reimbursement of expenses. Diabetes UK recommends that all out of pocket expenses should be covered ie travel, childcare costs and carer costs. Strong consideration should also be given to funding users and members time to achieve significant engagement.

    —  Various methods can be used to attract people living with diabetes, which include for example:

—  ask healthcare staff to promote the opportunities for involvement;

—  ask existing user representatives to inform friends, families and colleagues;

—  posters in GP surgeries, hospitals or pharmacies;

—  mailings to all those living in a neighbourhood, perhaps through the electoral register;

—  contacting local voluntary groups or organisations eg one of Diabetes UK voluntary groups or networks;

—  advertising in community centres, Patient Advice and Liaison Services (PALs), and local press;

—  contacting national organisations, such as Diabetes UK, Voluntary Action Councils or disability groups who may be able to promote activities in communication channels; and

—  holding public meetings to share information, answer questions or consult on current services and future planning. These meetings offer the opportunity to find people who may be interested in getting more involved.

  4.3  Funding and support

  4.3.1  There needs to be recognition from the Department of Health that investment is needed to enable user involvement. This needs to be done from two perspectives; there needs to be support and training for the users and also support and training opportunities built in to enable healthcare professionals to listen to the users. LINks need to be provided with knowledge and skills to involve users and how to value users view.

  4.4  Areas of focus

  4.4.1  Obviously we would like a focus on diabetes services specifically. However, our User Representatives have fed back to Diabetes UK the importance of taking a holistic approach to service design. Diabetes, as a long-term condition, has many similarities with other conditions such as heart disease, stroke, asthma, cancer. These similarities include exercise, diet, lifestyle, counselling, support on diagnosis, patient self help and education. Whilst there are differences in the actual content that require a specialist approach, there could be a generic process and approach.  For example, a NHS team funded a gymnasium specifically for their diabetic patients but that was only available part time. If this had been set up as a general resource for others to use, then GPs could refer more patients with other needs to the unit, thus allowing the resource to be used more efficiently and available to help more people.

  4.5  Relations with local health Trusts

  4.5.1  We welcome the requirement that NHS trust providers and PCT commissioners need to increase meaningful engagement. However, the guidance does not currently specify how this can be done. Emphasis must be placed on identifying and engaging with the systems and groups already in existence. Specific requirements need to be put in place detailing how and who PCT commissioners consult with to commission and develop new and existing healthcare services. Planning, commissioning, monitoring and feedback of diabetes services must involve volunteers, user representatives, carers, healthcare professionals and campaigners directly affected by diabetes and using the services. Systems will need to be put in place to ensure involvement and support of users focused on specific conditions such as diabetes, as well as around functional and generic healthcare delivery issues, to ensure accountability. Models of good practice already exist where managed diabetes networks, involving specialist, primary and community staff working in partnership with people with diabetes (user representatives and champions), are planning and developing local diabetes services. Diabetes UK provides detailed guidance and practice examples to users and those working in the NHS It is these established networks that should be leading and advising on the commissioning and monitoring of appropriate services, with strong involvement from people with diabetes.

5.   How should LINks relate to and avoid overlap with:

  5.1  Local Authority structures including Overview and Scrutiny Committees

  5.1.1  The plans for LINks to establish specific relationships with OSCs will we think provide greater accountability, however concerns exist about how closely all OSCs currently work with PCTs and healthcare professionals to ensure adequate patient and public involvement in healthcare. The creation of stronger links between health and social care is essential for improving the integration of health and social care. OSCs need to strengthen their links with PCTs and proactively monitor services for specific groups. The National Service Framework for diabetes sets clear standards of care for people living with diabetes and OSCs need to ensure that these standards are being delivered in all areas.

  5.2  Inspectorates including the Healthcare Commission

  5.2.1  The DH's consultation document states that users will be more involved in regulation and inspection bodies and processes. However, it does not state how this will happen. We welcome the commitment to measure the performance of user involvement processes and look forward to commenting on the criteria developed to assess against national standards. In order to strengthen the voices of those living within local communities efforts must be focused on proactively seeking and benchmarking patient access and experiences. The Healthcare Commission User survey of access and views of people with diabetes will provide a good indicator to compare across local health areas. Diabetes UK has worked with Dr Foster to monitor the quality of diabetes care provided by PCTs10 in England comparing this to the experiences of and access reported by people with diabetes. 11 The "Your local Care" benchmarking tool can be found at This tool, alongside Diabetes UK's annual diabetes state of the nations report12 provides a means of benchmarking the quality of care nationally to inform commissioning processes and regulation to monitor if people with diabetes are receiving the care they should expect. 13

  5.3  Formal and informal complaints procedures

  5.3.1  Information about how to complain must be easily accessible. Users must be given information about what services to expect. Mechanisms should be in place about services to capture views of those who may not use traditional complaints systems. Systems should be in place to feed complaints about policy guidance back in at the local level so that these can be addressed locally as well as nationally.

6.   Conclusion

  6.1  Diabetes UK   welcomes further advances towards putting in place structures to give patients and the public a greater say in the way that their health care is delivered. These structures must build on the successes of many Patient Forums but must also reach out to communities that have proven harder to reach in the past. Resources must be provided to ensure that representatives, managers and healthcare professionals are trained to communicate, listen and understand how to engage effectively using these new structures and there needs to be effective and ongoing monitoring and feedback systems in place.

Claire Francis

Public Affairs Manager, Diabetes UK

10 January 2007


1 NHS Plan. Department of Health. 2001.

2 Anderson W, Florin D, Gillam S and Mountford L. Every Voice Counts. Primary Care Organisations and public involvement. Kings Fund. 2002.

3 College of Health. User Involvement. A guide to development effective user involvement strategies in the NHS. 1997.

4 Department of Health (HSC 1999/210) Patient and public involvement in the new NHS P4.

5 Diabetes UK (2005) Guidance for Primary Care Trusts and Diabetes Networks—User Involvement and the Diabetes National Services Framework.

6 Diabetes UK (2005) Guidance for Primary Care Trusts and Diabetes Networks—User Involvement and the Diabetes National Service Framework.

7 College of Health. User Involvement. A guide to developing effective user involvement strategies. NHS. 1997.

8 EL(97)39.  Priorities and Planning Guidance for the NHS: 1998/1999.  NHS Executive. September 1997.

9 Diabetes UK (2005) Guidance for Primary Care Trusts and Diabetes Networks—User Involvement and the Diabetes National Service Framework.

10 Your local care. Diabetes Services in England. Research by Diabetes UK and Dr Foster. November 2005.

11 User survey of people with diabetes. 18,000 responses. Diabetes UK. 2005.

12 Diabetes: State of the Nations 2005. Progress made in delivering the national diabetes frameworks. A report from Diabetes UK

13 What Diabetes Care to Expect. Diabetes UK 2005.

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