Patient involvement
Patient and public involvement
The involvement of patients, carers and the public in health decision-making is core to the UK's National Health Service and fundamental to quality care - see RCN Principles of Nursing Practice: Principle D. Active and effective involvement of people with diabetes and their carers is intrinsic to the national frameworks and strategies for diabetes across the UK. The emphasis is on enabling as wide a participation as possible.
In Scotland, the Patient Focus Public Involvement (PFPI) initiative requires that Community Health Partnerships (CHPs) establish Public Partnership Forums - local networks of organisation and individuals which provide a mechanism for communication and involvement. The forums may include or involve local groups such as diabetes support groups for input into more specific areas. Information about the role of the Public Partnership Forums is available on the Scottish health Council's website - see Public Partnership Forums. Diabetes Managed Clinical Networks in Scotland are involving patients in a variety of ways as members of groups working with practitioners or as specific patient groups.
In England, Local Involvement Networks (LINks) were set up in April 2008 to represent views of local people on health and social services. The proposal made in the White Paper Equity and excellence: Liberating the NHS is that these become local HealthWatch groups which will feed intelligence to a new independent consumer champion HealthWatch England and provide advice to patients accessing services and making choices about care ( Department of Health 2010). Patient involvement and user representation in planning services are key elements in the work of local diabetes networks.
In Wales, Local Diabetes Services Advisory Groups (LDSAGs) provide the key mechanism for user involvement in planning and monitoring services. For example the LDSAG in Carmarthenshireis now a Network and has set out its aims and objectives – see Diabetes-Carmarthenshire.
User involvement in the configuration of services is vital. A good "how to" introduction is 'Involving Patients and Carers' in the series of Improvement Leaders' Guides (NHS Institue for Innovation and Improvement 2005). This includes a case study describing how patients and carers actively shaped the delivery of diabetic care in two English trusts. Guidance and examples of user involvement are also provided by NHS Diabetes, formerly the National Diabetes Support Team (2007a).
Self care
Patient involvement in diabetes care occurs at different levels. Fundamental to successful management of diabetes is the involvement of the person with diabetes in their own care. Patient empowerment is a priority within the national frameworks and the promotion of self care is at the core of strategies for the management of chronic and long-term conditions (Department of Health 2006b).
The Expert Patient Programme (EPP) is aimed at people with chronic and long term conditions supporting them in the development of self-management skills while also encouraging collaborative work with health and social care professionals.
Care planning is a key activity in enabling people with diabetes to take a more active role in decision-making and managing their diabetes. Underlying the process are a patient-centred approach and partnership between the patient and the health care professional. Facilitating a two-way communication process sensitively is intrinsic to this (Royal College of Nursing 2010, Principle E).
The 'Patient voices' section contains stories which describe how people with diabetes experience diabetes care and how they manage their own care.
Go to: Patient voices.
Patient education
Essential to supporting self care is structured and timely patient education. The National Institute for Health and Clinical Excellence (NICE) (2003) has established some criteria for patient education models.
Two national programmes which meet the criteria are - Dose Adjustment for Normal Eating (DAFNE) for Type 1 diabetes and DESMOND (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed) is a group education programme for people with Type 2 diabetes. Other programmes have been developed locally.
Patient information
Equally important to supporting effective decision-making and informed patient choice is access to high quality patient information. The NHS Choices website has been developed to help patients make choices about health, lifestyle decisions and finding and using services. It includes a section on diabetes.
Go to: NHS Choices: Diabetes.
My diabetes my way is an interactive website from NHS Scotland which provides a range of resources to help support people with diabetes, their families and friends.
Go to: My diabetes my way.
Another important development is the introduction of advocacy services such as the Patient Advisory and Liaison Service (PALS). They are a point of contact at trust level for patients, carers and the public seeking information and advice about services and advocacy. They are also instrumental in providing speedy resolution of problems and signposting independent advice and advocacy services. And they can act as a focal point of feedback from patients.
References
Full details of the bracketed citations in the text above and, in many cases, links to the actual documents are available in the reference list within this resource.
Go to: Reference list.
Resources
The resources section describes and links to key evidence which may be in the form of guidelines and guidance or systematic reviews and summaries of evidence. Also included are examples of patient information and other quality resources which are particularly relevant.
Go to: Resources.