Venue: Conference Room 1, Manukau Super Clinic, 901 Great South Road, Manurewa

National Renal Advisory Board

Date: Friday 21 February 2014 Time: 9.30am – 2.30pm Venue: Conference Room 1, Manukau Super Clinic, 901 Great South Road, Manurewa.

COMMITTEE MEMBERS Murray Leikis [Chairperson]

David McGregor, Michael Papesch, Rachael Walker, Tonya Kara, Kay McLaughlin, Lucia Bercinskas, Kelvin Lynn, Fredric Doss, Jo-Anne Deane, Nick Polaschek, Janine Cochrane, John Schollum, Ian Dittmer, Chris Hood

APOLOGIES Jo-Anne Deane, Janine Cochrane

GUESTS

SECRETARY Prue Fieldes (ADHB)

Declaration of Conflict of Interest to any of the following agenda items

None raised.

GENERAL BUSINESS

1 Review of the Board minutes recorded at the previous meeting held on 13th November 2013, and subsequent correspondence

Minutes from previous meeting accepted.

2 Review of the action points recorded on 13th November 2013

The following points were raised:

 Item 8 – NZ Chapter ANZSN: Murray to follow through with ANZSN and Mark Marshall about Matakana Meeting presentations being available on ANZSN website.

 Item 10 – Ethical Issues of Organ Allocation – Martin Wilkinson. Deceased donor allocation scheme is now available on the NRAB website. It is illegal to discriminate against age. Nick to review where Ministry is at with Ethical Issues of Organ Allocation. Nick to report back to the committee once any reports are generated on this issue.

 Item 13: Standards and Audits: Mark Marshall and Grant Pigeon working on this and it may be ready for Baxter’s meeting. Murray to look at Standards and Audits Report and to ensure the personnel taking over the Standards and Audits report are involved. Rachel will organise appropriate person from the NAG to join Standards and Audit team

3 Review of the public version of NRAB minutes from the meeting held on 13th November 2013

Murray to send Word versions of last 4 meeting Minutes to Michael for him to review and develop a public version that can be posted on NRAB website. Formal minutes in PDF to be sent to Clinical Directors and Charge Nurse Managers of each unit.

4 Regional Roundup

Members reported on the activity in the respective regions. Of note was the Waikato Region was completing their regional plan in the next few weeks.

1 | P a g e National Renal Advisory Board

5 NRAB Structure, Composition and Function

Murray to write on behalf of NRAB to Adrian Buttimore, Christchurch) and Stephen Munn, (New Zealand Liver Transplant Unit) both of whom received “Officer of New Zealand Order of Merit” for Services to Health.

Murray to send everyone a copy of revised TOR to look at. Changes will include:

 inviting the Chair of the NZ Renal Group and Chair of the National Transplant Leadership Team as ex officio members  removal of requirement to have a COO as member (currently have 2 management members), and  details of meeting venue and secretarial support.

Members are also requested to update their membership terms dates for transparency.

NEW BUSINESS

6 NZ Chapter of the ANZSN

Following a successful meeting at Matakana in October 2013, there will be a further meeting in late 2014. Murray to request formal final budget details and ANZSN approval.

7 Tier 2 Document Update

Nick to send Minimum Standards document to everyone, for discussion at the next meeting. A small working group will need to update this by end of 2014.

In discussion, questions about access to services was raised. The NRAB noted that CMDHB have developed a new policy for home dialysis and centre based dialysis options which appears to limit patient choices.

Murray to write and ask Hla Thein (Clinical Director) and Manager Catherine Tracy from CMDHB to present at next meeting their overview policy and strategy.

8 PTAC Nephrology subcommittee

Murray noted that Pharmac are initiating this subcommittee. People will be appointed to sub-committee by PHARMAC following nominations.

9 CKD pilots / Symposium

Following the workshop last November, the resulting documents have been written and in process of getting feedback. Nick will circulate final document prior to next NRAB meeting and this to be endorsed at meeting.

It was noted that Kidney Health Australia have some good resources for primary care education and consideration was given to utilising this if possible. Kelvin to discuss possibilities with Tim Mathew (KHA).

DIALYSIS

10 Electrical Standards

Kelvin noted that electrical standards for dialysis were being reviewed. In discussion, it was noted that circuits can become overloaded if RO Unit plugged in as well as Dialysis Unit. Murray to feedback process to Debbie.

11 Water charges

Murray raised the issues that various Councils are charging for water and home haemodialysis patients pay between $400 and $500 extra a year for water. In Auckland these patients get reimbursement of around $450 per year for this. Units either need to pay for the treatment component of home dialysis patients’ water or come up with another way for this to be paid. If patient is a WINZ clients they may be able to get a payment of up to $50 per week, 2 | P a g e National Renal Advisory Board

but they may not be eligible. There is an increased cost of not only water but also electricity and heating costs for home dialysis patients.

It is likely that this will eventually be picked up in the purchase unit codes for home dialysis over time as costs are realised.

12 Management of ineligible patients within NZ

This item was deferred to a future meeting.

13 PD Registry Update / PDOPPS update

John Collins sent an update to the NRAB for the NRAB to consider the following issues:

 the most appropriate governance and accountability arrangements for the NZPDR, with one approach being accountability to be to the MOH via the NRAB.

 Funding for the development and maintenance of the NZPDR is assured through to June 30th 2014. This is a combination of funding from ADHB and funding from the ADHB renal trust fund. Thereafter there is a substantial funding shortfall. The nature of this registry makes it very unlikely that any research funding application would be successful. A clear recommendation from the NRAB on the strategy for future funding is required; this may be from more than one source.

General discussion from NRAB is that it would be best to request funding from the MOH, including the option of linking the PD registry to the ANZDATA contract. Other options include charitable groups or look at PhD sponsorship.

Murray to write to John to ask him to seek funding from Ministry though other options might also be required.

14 Disaster planning patient and service preparedness

There has been a National Disaster Plan developed; Nick will put this on the NRAB website. The Northern Region is developing their own plan which is less related to earthquakes and more to volcanic activity. Once developed this to be shared with NRAB and Nick to put on NRAB website.

15 Electricity dependence for home dialysis

The NRAB were advised that Northland home dialysis patients have had their power turned off if bills have not been paid. These patients should be eligible for process to have power kept on as per guidelines from 2010. Nick to feedback to Whangarei that dialysis patients are classed as medically dependent on electricity.

TRANSPLANTATION

16 National Transplant Activity

Ian presented information on transplant activity to the NRAB for their information- see attached links.

P:\Prue\NRAB\2014\ P:\Prue\NRAB\2014\ NZ_TxSubcommittee2013_21Feb14.pptANZData_21Feb14.ppt

17 NHB review of renal transplantation models and funding

There have been various meetings of the Technical Advisory Group for the new national service group, which have developed a service model which will be discussed for endorsement at the next TAG meeting at the end of February. Michael expressed concern whether the roles and responsibilities of the new national service were clear, however the Ministry was confident that the model was robust. A clinical director for the new national service would be appointed via an application process.

18 Live Donation Long Term Outcomes 3 | P a g e National Renal Advisory Board

Michael noted that a journal article from Norway indicated that there may be a long term health disadvantage for live donors. It was agreed that advice to donors about the long term health risks and chance of getting renal failure should be updated on the KHNZ website to be updated by Kelvin and Michael. Kelvin would lead this work with get expert advice re this from Ian Dittmer, Mark Marshall and Nick Cross and then modify statement. Murray to note this concern with the national transplant service committee.

19 Live Donor RFP

Under the project, CMDHB is preparing a range of resources that the Minister will launch on 25 March. The resources will be made available to all Units. Nick to talk to Mark re sending something out to other heads of Units.

20 Paired Exchange RFP

To be discussed at the next meeting.

21 Update for National Strategy for Pacific Renal Service Development

Deferred to a future meeting.

STANDARD REPORT UPDATES

22 Report on Kidney Health New Zealand

Kelvin presented an update, including:

 the progress in the development of a KHNZ strategic plan

 World Kidney Day is 13 March 2014, and

 Kelvin is retiring at the end of the year so need to configure how to go forward and whom may be interested in role of National Kidney Director.

23 Sub-committee Reports

a) Standards & Audits: Work in progress. The 2011 data report will be ready soon. Basic graphs to be presented at the Baxter meeting 28 February 2014. New Standards and Audits committee to work on more timely reports and catch-up with 2012 report overdue. Murray to write to S+A sub-committee.

b) RSA / Nursing Interest Group: No NAG meeting since last NRAB meeting.

c) NZ Board of Dialysis Practice: Frederic provided a full report on developments in training and qualification regimes for dialysis technicians, the structure and status of the NZBDP, and future

24 Renal Service Improvement Project

Nick reported that the key elements of this work had been covered in other agenda items.

25 Other business

a) Nephrologist Training: Janak de Zoysa had raised concerns regarding Nephrologist Training in New Zealand with the local committee being merged with Australia. No-one else raised concerns and the committees have merged. There are likely to be 2 members from New Zealand

b) Generic Tacrolimus: This is happening around mid 2014 PHARMAC will be sending out guidelines on the change process

c) Meeting dates and venue: Friday May 9th, Friday Aug 15th, Friday Nov 21st

4 | P a g e