HomeGuidelinesMembersAccreditationMeetingFind
 

Home

Aims and Organisation

Achievements

Constitution

News Archive

Minutes

Links

Contact

Search

 

Achievements in the First Three Years

Development of common approaches to management by means of setting consensus standards of care
Standards of care developed to enhance diagnosis, care and management for patients with PIDs were set by consensus of the profession at an open meeting in October 2000. The process was validated by an initial self-assessment exercise in which 17 centres took part; this showed that standards were showed that compliance was achievable and appropriate.

Peer review accreditation scheme
Voluntary applicant centres have submitted details of their services and 2 consultants and a senior nurse have visited over 2 days to assess compliance with the standards. Five pilot visits have now been made and the outcome of those visits and the modifications needed for the final accreditation process have been submitted for publication. The scheme has been modified in the light of experience and details will be posted on the web site. If approved by the members at the biennial meeting in November 2003, the scheme will go live in 2004. Considerable emphasis has been put on the opportunity for nurses and clinicians to share ideas and to collect and consider the views of patients.

Training for accreditation
UKPIN Assessors, including consultants with previous training in accreditation procedures by Clinical Pathology Accreditation [CPA] and senior nurses, have undergone assessment training and are conversant with the standards. Three training days have been held and there are now 10 nursing and 11 medical fully trained assessors; further training days for new assessors are being held annually. An open information/training day will be held in September for all potential applicants, in order to make the process clear and to discuss any concerns or queries.

The quality of the accreditation process
UKPIN has set out to run its affairs, particularly its activity in accreditation in a manner aimed at assuring the quality of the process. Contact has been made and discussions opened with UKAS to advance this policy.

Provision of generic protocols based on common practice
So far 6 generic protocols have been produced and posted on the website for comments for 3 months. The protocol-writing group, which consists of nurses and consultants, will reconvene in the autumn to continue to add to this openly available, important database.

Links with other organisations in the field of PID
Liaison with a variety of bodies involved in the provision of PID services has been crucial in order to provide a process by which to influence relevant decision-making within the UK and Europe. Bodies with which communications are now established include:

  • European Medicines Evaluation Agency
  • Individual immunoglobulin manufacturers and the Plasma Products Therapeutics Association
  • Specialist commissioners in the NHS
  • Department of Health
  • Joint Committee for Immunology and Allergy of the Royal College of Physicians and the Royal College of Pathologists
  • Other professional bodies involved in medical specialties in which IVIg therapy is used

Liaison with the PiA, who are the representatives of the patients
Six meetings have been held with representatives of the PiA to discuss matters of mutual interest. These have included supply and availability of therapeutic immunoglobulin, the relative risk of variant CJD, encouragement of research awareness in PIDs and facilities for supporting outcome databases.

Aims for next two years 2004-5

  • Reactivate the UK steering group for a new online national register, in conjunction with the ESID register, as a means of providing a minimum data set for the UK.
  • Encourage participation in the ESID disease specific, outcome databases as a means of providing clinical information beneficial for the management of individual groups of patients with PIDs.
  • Continue discussions with UKAS in order to establish the process by means of which UKPIN can achieve accreditation as an accrediting body.
  • Encourage all centres to establish accreditation awareness with local specialist commissioners and to work with them to provide appropriate funding.
  • Revise Consensus document for diagnosis and management of Primary Antibody Deficiencies, providing evidence and involving trainees
  • To establish the governance of UKPIN on a firm and fair basis, defining the remit of its officers, periods of office, process for succession, responsibilities to communicate with the membership and links with official bodies such as Royal Colleges, ACP, BSI etc to ensure sustainability of UKPIN

Aims for second term 2006-2011
To be decided by incoming officers and steering group

UKPIN is sponsored by CSL Behring