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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:
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European Medicines Evaluation Agency
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Individual immunoglobulin manufacturers and the Plasma Products
Therapeutics Association
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Specialist commissioners in the NHS
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Department of Health
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Joint Committee for Immunology and Allergy of the Royal College
of Physicians and the Royal College of Pathologists
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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
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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.
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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.
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Continue discussions with UKAS in order to establish the process
by means of which UKPIN can achieve accreditation as an accrediting
body.
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Encourage all centres to establish accreditation awareness with
local specialist commissioners and to work with them to provide
appropriate funding.
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Revise Consensus document for diagnosis and management of Primary
Antibody Deficiencies, providing evidence and involving trainees
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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
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