NZORD Education Session

27 February 2019

The morning session featured presentations from PHARMAC and Carers Alliance, as well as an hour with a life coach.

PHARMAC provided an overview of their processes and factors for consideration, highlighting the fact that a decline or deferral did not mean that the medicines needed to go back to the beginning of the process - an open-door policy for new evidence or input was permitted to PHARMAC for consideration. The issue of deferral for Spinraza for patients living with spinal muscular atrophy, and the resulting impact on several of the children present in the room led to some deeply emotional questioning of the human side of the factors for consideration versus the cost benefit analysis that appears to be prioritised. Several of the participants moved to another room to continue the conversation with PHARMAC advisors including the Deputy Medical Director Dr Peter Murray, Therapeutic Manager Sarita Von Afehlt and Alison Hill, Director of Engagement and Implementation.

Laurie Hilsgen presented on Carers NZ and Carers Alliance with updates on all the strategic documents, the new carers strategy consultation process and key priorities. The impact of continence was highlighted with many explaining the difficulty in sustainability, consistent funding and assessment processes. Issues relating to respite were touched upon and Laurie explained that a report has been commissioned by Synergia and will be shared through NZORD. The main hopes were for a more flexible and fairer system in due course with ongoing dialogue with government and Ministry of Health as funding shortfalls were a barrier to successful implementation of new funding options.

Life coach Tracey Hancock formulated her session around what people felt was most important to them; areas included financial constraints and impacts on employment, carers issues in relations to gaining support themselves, setting appropriate boundaries with other members of the same disease group, clinicians and journalists who may have vested interests in personal attacks. Being able to say ‘Thanks but no’ when needed as many pressures from others were coming from a place of that person’s needs and a lack of awareness of concern about your needs. Tracey’s advice included stating and clarifying what your needs are, and explaining that some comments or input may be unhelpful and are not welcome is a sensible (and healthy) thing to do. Also, to break down actions into smaller parts so it can be managed in smaller ways so it can feel less overwhelming.

Feedback from the day was extremely positive, with attendees valuing the opportunity to connect with others and share experiences.

Photo: NZORD chief executive Dr Collette Bromhead with Lincoln, a young boy living with spinal muscular atrophy.