QUESTIONNAIRE

While there was nothing in the grant agreement suggesting that CCDR could not host patient groups and deliver services on their behalf, we asked the question about three groups that we had been hosting as they had no formal patient organisation to support them. As a result of this question, Health developed a questionnaire with the following questions that they instructed must be completed for each partner organisation.

CCDR indicated that we did not have all the requested information on hand and would need to ask each group to complete it. Health’s response was that we should have all the requested information on hand and should not need to ask partners to complete it.

Questionnaire developed by Health in response to CCDR hosting patient groups

Purpose of questionnare (25 July 2022. Health)

“I have also consulted with the contracts team in the Department, and at this time I am unable to provide further advice to you regarding CC-DR’s administration of funding to the Liver Cancer Support Australia, Ehlers-Danlos Syndrome Australia and NMOSD Australia, without clarifying the details of the arrangements. I have attached a questionnaire for you to complete requesting further information”

A simple reading of the contract by two independent advisors confirmed CCDR was working within the terms of the grant agreement by hosting patient groups and delivering services on their behalf. The questionnaire appeared to contain questions for reasons that were not transparent. CCDR requested a meeting with Health to discuss the questionnaire. CCDR had concerns that questions being asked did not align with the grant agreement and that there were unilateral changes in our grant agreement (for example, new definitions of ‘Patient Organisation’ had been introduced). With less than 24 hours notice, Health indicated that representatives from their legal division would attend this meeting to “discuss legal questions”

CCDR was not given any time to prepare our own legal representation. Health suggested they could meet without a lawyer present however knowing that Health had already consulted a lawyer/legal advice meant this meeting was not possible as we did not have adequate time to prepare.

It was at this time that Mr Chris Bedford corresponded that CCDR would be issued with a Notice of Remedy if we did not meet with him.

“if you prefer not to meet I can issue a Notice of Remedy that formalises the outstanding aspects so that expectations are clear”

In good faith, CCDR developed a more reasonable version of the questionnaire which we also used as part of our own internal acquittal process.

CCDR’s amended questionnaire

Each partner organisation completed the questionnaire, confirming that all funds had been received and spend according to the purpose of the grant. CCDR has also provided this as proof of expenditure of funds to Health.

CCDR had explained to Professor Brendan Murphy that we had amended the questionnaire and the reasons for this. Nevertheless, this was noted in the Notice of Remedy issued by Mr Chris Bedford as CCDR being non compliant.

CCDR responded to the questions included in Health’s questionnaire in our video presentation, as well as related additional questions received within the Notice of Remedy (from minute 41.50) CCDR also note that in the external evaluation conducted by Abt Associates, the authors conclude that it was not necessary to service more than 10 patient organisations within the grant, and questioned the value of any service provision beyond 10 patient populations.