July 04, 2018

Patient and family WPIW day in Manchester

Ms Barbara Boardman, a primary immunodeficiencies (PID) clinical nurse at Manchester University organised a WPIW event in Manchester on April 12, attended by over 50 participants, including PID clinicians, nurses and patients. IPOPI President, Mrs Jose Drabwell, was in attendance and provided an overview of IPOPI’s worldwide work.

Dr Tracy Briggs gave an overview of genetics and genome medicine, a complicated topic made very easy to understand by the way Dr Briggs presented all this information, from the innate and adaptive immune system to changes in gene mutation, followed by an explanation of exome sequencing, “100,000 genome project”, prenatal testing and genetic diagnosis.

Clinical Nurse Fran Ashworth, lead nurse for accreditation, spoke about the process which involves adhering to the system of providing high quality care and standards.  At the moment there are 10 fully accredited PID centres and 23 others are registered to work on becoming fully accredited. A dedicated team consisting of a PID consultant, nurse specialist and a patient inspector are making on-site inspections although it is mandatory that centres are working on their own accreditation standards which involves organisation and administration.

Participants at the meeting in Manchester

Mrs Jose Drabwell, President of IPOPI provided an overview of the organisation’s objectives and achievements, giving the participants a snapshot of all the work which is being done on behalf of PID patients worldwide.

After a quick lunch it was back to work on two separate workshops, Transition care and Patient empowerment.  The outcome of these workshops will benefit the PID clinical teams and the patients.

The final session of the day was the Q&A skilfully dealt with by the panel of doctors and nurses. A variety of questions were tabled such as “should a post BMT patient receive a vaccination?” The different routes of administration were discussed and of course many questions were asked about supply issues and the switching of products which is worrying for some patients but also creates a huge amount of extra work for the nurses.

The take-home message was delivered by Dr Peter Arkwright who stressed the importance of patient involvement, their participation but also responsibilities as representatives of the PID patients at a local level.

A great start to the World Primary Immunodeficiency Week!