ITEM

DECISION

RESP PERSON

DUE DATE

CONTROL

BREAKFAST

1.      WELCOME

Martina Skeen

2.      INTRODUCTIONS

All

3.      APOLOGIES

None

4.      APPROVAL OF DRAFT AGENDA

Approved

5.      BUSINESS

5.1  Purpose of the meeting

Overview was given by Martina Skeen

Martina Skeen

5.2   Background / History and general discussion

Nic Olivier and Kerryn Loftus gave a presentation on the need for an advocacy group for  leukaemia in South Africa

Kerryn Loftus gave background information

General discussion took place; amongst others the following issues were raised:

-    List of problems of patients

-    Not pushing Gleevec

-    Awareness

-    Support

-    Working with Government on medical aid issues

-    Providing initial steps – self sustaining group – separate sustained group

-    Cause problems with doctors – all patients different – build trust – sensitive issues – presentations to doctors –

-    Sensitive issue – good thing in long term

-    Have a stand at COSMO (Wild Coast Sun)

-    Aligning group with other advocacy groups

-    Novartis would not be at the forefront

-    Pharmaceutical companies plays very important role – dissemination of interaction – no alignment to one specific company

-    Access to the state of the art information – put pressure on doctors

-    Working together with medical aids, etc.

-    Install major panic from other patient – a matter of education and discovering the gray a

-    (patient support group – organ transplant) patient support meetings and doctor gave advice on all questions

-    Funds constraint

5.3   Needs Analysis

1.       Medical

-    Protocols

-    Advisory Board

-    Paediatric unit
–  (Lotto) Red Cross

-    Bone marrow registry
– knowledge / 
– explanation /
– combine resources (Data Base of Blood type)
– obtain information
– web based information call centre (3-4 good information sites)
– import “people” technology

-    Clinical Trials
– MCC
– interaction to key stakeholders
– establish in South Africa
– South African Transplant centres – accredited

2.       Financial

-    Funding – SARS – Fund raising
– MA Scheme lobby

3.       Patient Support

-    Information
– children’s books

-    Patient support
– meetings

-    Access to Clinical Trials, BMT x Treatment

-    Screening

-    Info / Facts about benefit successes

Martina Skeen + All

5.4   Set objectives, aims and goals of the Advocacy group

Covered above

5.5   Proposed function and structure of the Advocacy group

Covered above

5.6   Expected outcomes

Covered above

BREAK

6.      WORKING LUNCH TO DISCUSS IMPLEMENTATION

·         Group needs a driver

·         Resource services kindly provided by Nusreen Khan (Reach)

·         Patron needs to be identified

Martina Skeen

After 05 Feb 05

6.1     Draft Constitution

Vision and Mission

Aims, Objectives, Outcomes

Monitoring and evaluation – impact assessment

Structure (Management Board + Office)

Other Constitutional Matters

Legal vehicle

Provide examples of constitutions abroad and in South Africa

George Tomson

Nic Olivier-(Convenor)

Martina Skeen

30 November 04

6.2     Draft business plan

Background

Activities, Timelines, Responsibility, Control

Budget items (linked to activities and direct expenses)

George Tomson

Nic Olivier-(Convenor)

30 November 04

6.3     Create structure

To follow approval of Constitution and Business Plan

After 05 Feb 05

6.4     Funding and sustainability

From business plan identify funding needs and priorities

Identify possible sponsors

Identifying other self sustaining funding mechanisms (e.g. laser cartridges)

Action plan

Margaret McCulloch

George Tomson

21 January 2005

6.5     Marketing and communication

Identify other key stakeholders

Brochure, etc.

Website, etc.

Shaun Watts-(Convenor)

Johan  Maartens

21 January 2005

6.6     Protocol development (treatment, medication, medical aid, etc.)

Investigation into Status Quo (legal information, cancer programmes – medical aids, national health, provincial health, exiting treatment protocols)

Identify stakeholders (e.g. the clinical Oncologists and other stakeholders including MCC, etc.)

Access information

Action Plan

Martina Skeen- (Convenor)

Nic Olivier

Nusreen Khan (Reach)

21 January 2005

6.7     Key stakeholder interaction

Identify other key stakeholders

Action plan

Implementation

After 05 Feb 05

6.8     Patient education and support

Identification of areas of need

Access to information mechanisms applied oversees and locally

Action Plan

Carmia Fainstein-(Convenor)

Yaron Fainstein

Ina Maartens

21 January 2005

6.9     Bone Marrow Registry

Status Quo information

Linking with existing organisation

Action Plan (also identify the gaps)

Margaret McCulloch

21 January 2005

6.10 Staffing and office space

To follow approval of Constitution and Business Plan

To follow availability of funding

(should be covered in the Business Plan)

21 January 2005

7.      FORMATION OF THE INTERIM EXECUTIVE COMMITTEE

After

05 Feb 05

8.      GENERAL

Mission statement – immediate deliverable

To provide info and support to all people living with Leukaemia

Send template of report to Martina Skeen

Draft Business Plan and draft Constitution forwarded to Martina Skeen

All

Nic Olivier

George Tomson

Nic Olivier

9.      NEXT MEETING

5 February 2005 (full day, and possibly and also previous evening)

Martina Skeen to organise and inform everybody

05 Feb 05

10.  DISTRIBUTION OF MINUTES

At conclusion of meeting

Brindi La Grange

11.  CLOSURE

TIME: 14:00