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Tuesday, 6 July 2010

User Led History

Found this interesting piece in my archives:

A National Federation of Service Users and Carers.

In the run up to the legislation that set up PPI the Government commissioned a scoping report from a consortium of service user and carer organisations under the aegis of the Patients’ Forum. That scoping report (which the Government subsequently studiously ignored) recommended the formation of a National Federation of Service Users based on the Netherlands model. The Scoping Report said:


In 1981 the Dutch Government published a policy document on patients’ rights. It concluded that patients’ rights as such without a social context did not mean very much. They needed to be linked to patient education and to the participation and involvement of citizens in the health care system.[ii] A national federation of patient and consumer organisations (NP/CF) was set up as a coalition of consumer organisations, patients’ organisations and organisations of elderly people in1992.


The aims of the Federation are to:

•Promote freedom of choice as the prerequisite of informed consent,

•Define the needs of patients and carers from their point of view.

•Provide a voice for many organisations and interest groups that represent groups whose voice is not normally heard at the highest political level.


The Federation:

•Offers a wide range of information in the form of books, leaflets and newsletters through a national network of information centres and services.

•Co-ordinates the strategies of interest groups to ensure that their efforts are not scattered but focussed on certain goals. Publishes an annual report, which receives widespread media coverage and there are also plans to produce ratings of hospitals’ performance against patient-defined standards.

•Integrates citizens and users’ views in order to promote quality from a patients’ point of view. The Federation works as an equal partner with the Dutch Royal Colleges and the Hospital Association in developing guidelines for good practice.

•Has funded research studies and is producing a handbook for health professionals pointing up the gaps between what patients want and what professionals provide.

The Federation have made some powerful interventions over the years. They went to court to protect patients affected by a strike of doctors and nurses, as a result there was a court ruling about what was and what was not allowed during strikes. They also organised a boycott where a hospital department was considered unsafe. As a result of the publicity the number of patients dropped by 80% in a week and management was forced to take immediate action.

There are about 50 organisations in membership, mainly umbrella organisations that represent general consumer interests, disease related interests and thematic or issue related interests (such as pensioners, children, women’s groups or alternative therapies). All these interests are drawn together in the NP/CF. The Federation recognises the different functions that members have and encourages collaboration rather than competition between members. There are about 2 million associated members.

Provincial structures

The national structure is mirrored by 30 Provincial Patient Councils, which draw together patient and consumer interests at this level, each council runs their own complaints and information desk. Provisional structures cover a population of 400,000 - 600,000.

•Insurers and local health providers are required by law to have formal “patient/user councils”.

•Hospitals and insurers offer places on boards and committees to patient representatives as good practice.

Patient representatives are also involved in complaints committees as a legal requirement. The Federation, the Royal College of Physicians and the National Hospital Association meet on a joint board that supports and runs a national network of patient/consumer advice centres in the community and complaints bureaux in hospitals (required by law). Patients register complaints and are advised how to take them forward, if necessary support and/or mediation will be provided. If the patient is not satisfied the patient/consumer bureaux will follow up the issue on their behalf.


Legislation, including a declaration of patients’ rights, is enshrined in the civil law. There is a Medical Contract Act that outlines the rights and duties of patients and doctors that is a basis for conduct. A series of laws have been passed which give formal recognition to the rights of patients to meaningful participation in decision-making at every level of healthcare and to the systematic provision of high quality information as the key to involvement, freedom of choice and quality of services.


Funding from the Dutch Ministry of Health.


Before the coalition was set up, the user lobby was scattered and ineffective in the Netherlands. The government supported the coalition because it was a way of bringing some equity between professionals, third-party payers, consumers and other interests.[iii] Graham Lister concludes: ‘What is perhaps most striking about the Dutch system is that the government has conferred on the NP/CFÊ the status of equal partner in a triangular relationship between the purchasers and providers of health services and the recipients of those services - the patients and their carers. They are seen as key contributors to the system of checks and balances for the protection of patients’ rights. The Dutch model of patient and public involvement can be seen as a facet of what they call the “Polder Model” of society in which consensus is achieved in an empowered community.’

Key features for the success of the Federation are considered to be:

•NFPCO crosses the divide between Government and the voluntary sector making a strong collective voice

•It does not try to speak for all patients but enables different groups to speak through them

•The patient/public participation system is based on a legislation giving clear rights and powers. The Experience of the Federation is that goodwill is not enough.

•Patients and consumer groups are well funded by the States.

•The Federation is able to provide a strong collective voice in the media.

Further information: http://www.npcf.nl/menu/i_engels.html

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