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Diabetes - patient involvement

The involvement of patients, carers and the public in health decision-making and self-care is core to the UK's National Health Service and fundamental to quality care - see RCN Principles of Nursing Practice: Principle D.

Effective care planning is a way of working in partnership with the person with diabetes and enabling them to take a more active role in decision-making and managing their diabetes.

The following resources provide guidance and support for involving people in making decisions and planning their care, and also on involving people in improving diabetes care and services.

Further pages list a selection of resources which support self-management and self-care, provide patient education materials and indicate key sources of patient information.

We also hear from people of different age groups about their experiences of diabetes in patient stories.

These resources were last accessed on 10 January 2014. Some of them are in PDF format - see how to access PDF files.

DAWN: Diabetes Attitudes Wishes & Needs
The first DAWN™ study initiated in 2001 "became the largest study of its kind carried out to uncover the psychosocial challenges faced by people with diabetes and the people helping them, and explore new avenues for improving care". The DAWN2™ study which commenced in 2011 carried on this work and is the largest ever global study to explore the unmet needs of people with diabetes". Tools and resources have been developed to support both health care professionals and people with diabetes including 'dialogue tools' which can be used for assessment, evaluation and monitoring psychosocial wellbeing as part of diabetes care.

Department of Health (2006) Care planning in diabetes: report from the joint Department of Health and Diabetes UK Care Planning Working Group
A report containing guidance on the care planning process for diabetes services, building on standard three of the Diabetes National Service Framework (NSF). It explains the principles and processes of care planning, reviews the evidence base, and offers guidance on putting it into practice.

Diabetes UK (2007) Involving children and young people in designing diabetes services
A Diabetes UK project which has drawn together examples of involving children and young people. The document aldo highlights resources for further information. 

Health Foundation: Shared decision making resource centre
This resource centre is designed to support individuals and teams to put shared decision making into practice "through the systems and processes the service uses, the skills and behaviours of staff, social marketing and support to patients". The Health Foundation define shared decision making as follows:

"A process in which clinicians and patients work together to select tests, treatments, management, or support packages, based on clinical evidence and patients’ informed preferences. It involves the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and systems for recording and implementing patients’ treatment preferences."

The Health Foundation also published a best evidence review in 2012 which summarises the evidence on how shared decision making can lead to improvements in the quality of health care – defined as safe, effective, patient-centred, timely, efficient and equitable - see Helping people share decision making
 
See also the associated publication Helping people help themselves. A review of the evidence which considers whether it is worthwhile to support self-management.

Healthtalkonline: Shared decision making
This section of the healthtalkonline website draws together themes around decision making from the database of interviews previously collected by healthtalkonline researchers. This includes interviews with people who have chronic health issues. The themes are: What is shared decision making? Different types of decisions settings and participants; Different types of patient/doctor relationships; What might go wrong when decisions are not shared?

NHS Diabetes (2012) Knowledge and Information Repository: care planning and diabetes (PDF 269.7KB)
The knowledge and information repository (KIR) was established by the former NHS Diabetes to provide easily accessible summaries of the latest guidance and important research relating to specific key topics. Each KIR topic includes a brief summary introduction, followed by a short collection of key policy papers, national body statements, clinical or care guidelines and the latest key research and evaluation papers as at the time of publication. This document is made available on the Diabetes UK website.

NHS Networks: Year of Care resources
The Year of Care programme was a three year programme which set out to “learn how routine care can be redesigned and commissioned to provide a personalised approach, including support for self-management”. This section of the NHS Diabetes website provides resources which can be used to set up programmes locally, and publications which contain some of the learning from the project including Partners in care: a guide to implementing a care planning approach to diabetes care 2nd ed (PDF 3.7MB).

NICE (2009) Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence (CG76)
This clinical guideline is about enabling patients to make informed choices by involving and supporting them in decisions about prescribed medicines.

NICE quality standards: Diabetes in adults: Quality statement 3: Care planning
NICE quality standards are a set of specific, concise statements that act as markers of high-quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions.

NICE quality standards: Patient experience in adults NHS services
The aim of this quality standard is to provide the NHS with clear commissioning guidance on the components of a good patient experience. It covers improving the quality of the patient experience for people who use adult NHS services but does not cover the experiences of carers of people using NHS services. The standards is accompanied by a clinical guideline CG138, and the guidance from both of these documents has been incorporated into the NICE pathway Patient experience in adult NHS services overview.

RCN (2012) Using telephone advice for patients with long-term conditions: an RCN guide to using technology to complement nursing practice (PDF 1.43MB)
This is one of a series of eHealth guides and should be used in tandem with the overview guidance Using technology to complement nursing practice: a guide for health care practitioners. This guide provides health care practitioners with an initial framework for building or redesigning a telephone advice service.
See also: Using technology to complement nursing practice (PDF 1106KB).