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Aims and Organisation

UKPIN is a multidisciplinary organisation devoted to those primary immunodeficiencies included within the specialist definition of Clinical Immunology - definition 16 (approved by the Department of Health). The network was set up to improve PID patients’ care through the development of common approaches to management by means of setting agreed standards of care. To further this aim, help is provided in the form of model protocols (policies, procedures and guidelines), based on common practice and available on the website for downloading by individual centres who wish to use them as the basis of local protocols.

In order that treatment centres can demonstrate good practice, a scheme for PID centre registration accreditation has been introduced. This provides a means of measuring engagement and compliance with the care standards. Following wide spread discussions and consensus on the nature of the standards, a self-assessment exercise was done. Subsequently pilot visits have been undertaken as part of the peer-reviewing assessment process, details of which can be found shortly on the website.

UKPIN has also provided a focus for consultation with regulators, manufacturers and NHS commissioners. It seeks to provide a means to influence decision-making processes within the UK and Europe, through representation on behalf of doctors and nurses and scientists working in the field of PID. It is also important to improve knowledge of PIDs through facilitation of research and encouragement of clinical trials of new treatments and therefore has close liaison with the PiA who are the representatives of the patients.

All nurses, scientists and medical practitioners involved in the healthcare of patients with primary immune deficiencies, or in research into these diseases, are deemed to be members of UKPIN. A list of members is held at the UKPIN office, which is established in the Department of Immunology, Royal Victoria Infirmary, Newcastle upon Tyne, with a part time clerical officer. A voluntary steering committee has been established; officers include the chairman, secretary, industry liaison officer and treasurer. Other committee members are co-opted to ensure balanced representation. Groups / working parties have been established as required, to deal with specific issues such as a new UK register, protocol writing, accreditation.

Currently, UKPIN is entirely a volunteer organisation, ratified by the open biennial Immunology Forum. It is formally approved by and affiliated to the Council of the Association of Clinical Pathologists. The Chairman of the ACP Immunology Committee is an ex officio member of the UKPIN steering committee.

Funding has been generously provided by commercial sponsorship, formerly from BPL and more recently from CSLB. This covers the administrative expenses of the organisation. Additional income could be generated from educational activities. UKPIN provides a Newsletter to members at least twice a year and a website for posting draft documents (such as revised standards and protocols) for consultation as well as items of information.