The Federation of Patients and Consumer Organisations in the Netherlands (NPCF) was founded in 1992 to bring together hundreds of patient and consumer organisations in the Netherlands to speak as one voice on areas of common interests, such as patients’ rights and access to care. It was realized in the late 1980’s that it was important for patients groups to work together in order to have a stronger voice and become a significant national player.  

The NPCF aims to strengthen the position of patients and consumers of health care by promoting their common interests by working with government, policy makers in national, regional and local institutions, professional organisations and providers of health care (home care, hospitals) and health insurance companies.  

Over the last five years the organisation focussed on the health reforms in the Netherlands: access to care, quality of care, transparency and the position of patient and consumer organisations as a countervailing power to health providers and health insurers.  

Before that the NPCF had been very involved in campaigning for legislation on patients’ rights, including legislation on complaints, quality, medical treatment and consent and the participation of clients in long term care. In future NPCF will be involved in campaigning to ensure that these rights are included in a single legal framework to obtain a single, more consumer focussed, law.  

Structure and governance

The Federation has 26 member organisations that are national networks. For example the National Federation of Cancer Patients brings together 23 national cancer groups. Zorgbelang Nederland represents 28 Regional Patient and Consumer Platforms.  

Together the member organisations represent 3 million people. The member organisations represent five strategic areas:

• chronically ill and physically disabled people
• (representatives of) people with a mental handicap
• people with a psychiatric disease
• consumers of home care and nursing care, especially elderly people
• consumers of care in hospitals and in front line services (family doctors, physiotherapists, dieticians etc).

About half the members represent disease specific groups and half population groups (i.e. elderly, homeless). Apart from full members, the Federation also has associate members, who are interested in the work of the NPCF and receive information but have no voting rights.  

To become a member an organisation must apply to the NPCF Board. All members must work from the patient’s perspective, be representative and work at national level with the main part of their work focussed on health. Organisations are expected to have multiple funding sources to ensure their independence.  

All members attend the general assembly which is held four times a year. The general assembly elects the Board which has five members drawn from each of the strategic areas. The Board meets 6-7 times a year. There is also a council for the general managers of member organisations that meets monthly to discuss operational issues.  

Once every three or four years a national patients' congress is organised for board members of patients organizations and other stakeholders which includes workshops and debates with political parties.  

Staffing

The office supports the member organizations. The office is located in Utrecht and has a staff of about 35, about 15 of whom work on policy issues.  

NPCF focuses on four action programmes:  

1. Costs

Last year the Dutch government introduced a new health care system. The NPCF monitors the access to health care for all and the solidarity in the health care system, and considers strategies for strengthening the position of patients and consumers.  

2. Choices

This programme focuses on work on the development and implementation of information systems for patients, and also on the further implementation of ICT in health care, e.g. the electronic patients’ records and telemedicine.  

3. Quality of care

The focus of this programme is sampling data on best practices and making them available to patients; implementing patients’ rights and introducing the patients’ perspective in guidelines used by professionals.  

4. Client

In this programme the NPCF works on achieving a better position of the client in the health care system. The new Dutch national health care system raises new questions : for example, insurance companies are responsible for negotiations with the health care providers on price and quality of care: who is responsible that care is given in time? Does a maximum waiting time exist and how does the patient know? And who is responsible for medical failures in the chain of doctors and nurses who take part in the care process? A more comprehensive and updated law on the rights of the individual consumer is needed, as well as a better position for the collectives of patient organisations.  

The NPCF supported the recent health reforms and worked on many different levels to ensure that they would meet patients’ requirements for equity and access. This work involved the continuous process of lobbying, press contacts, surveys, as well as direct contact with policy makers in the national Health care Department and with other stakeholders. Successes included an update of the system for risk equalisation, and enabling patients groups to negotiate insurance contracts.  

The most important role of the NPCF for its members has been the provision of information and identifying the implications of government policy for their work. Staff is available to respond to the demands of members and acts as a resource for them.  

Information and resources

The NPCF distributes information on health issues to the public and runs a telephone service providing general information for the public. It publishes its own journal, which comments from a consumer point of view on relevant issues in health care.  

Providing information to the public as part of the healthcare reforms is a new line of work for the NPCF. The NPCF is now looking at ways that they can represent the 14 million people who are not members of formal groups.  

Consumer representation on committees

The NPCF has representatives on national advisory bodies, such as the Healthcare Insurance Board (CVZ) and the Council for Public Health and Health Care. About 25 people from member organisations have currently been appointed to various national committees and councils.  

Finances

The NPCF is an independent organisation. It is mainly financed by the Fund PGO (a foundation for patients, handicapped people and elderly) and also receives grants from the Ministry of Health, Welfare and Sports and some foundations. Current funding is now approximately 2.5 million euros per annum.