South Island Cancer Consumer Group Chair Profile John Macdonald

Queenstown District Councillor John McDonald, Chair of the South Island Cancer Consumer Group and Southern Mental Health and Addictions Network.

John MacDonald spent most of his career as a self-described serial entrepreneur. From skiing and adventure tourism, to marketing, publishing, and motor trade in Queenstown, it was a cancer diagnosis that led to a change in direction.

Following a difficult 18-month period to be correctly diagnosed, John took surviving cancer as an opportunity to deliberately redirect his life. “The stress during that 18 months of trying to reach a diagnosis was unbelievable – it did my head in. I ended up very depressed and sought help through counselling and the Cancer Society. Throughout my career, I equated making money with being successful, but my experience of cancer caused me to reassess my priorities and ask what I can do that might make a difference for my community.”

John sold his businesses and drew on his skills and new connections in the health system to take on roles that focus on integrating mental health and addictions services, local government, community development, and cancer service improvement. Despite the range of topics, John sees a common thread running through them all. “They all connect – because of each of my hats I have a better understanding of the way the systems work and different perspectives to bring to the table.”

John joined the South Island Cancer Consumer Group in late 2018 (and became chair in mid-2019) after a nudge from the local branch of the Cancer Society. “One of the staff knew I was looking to get involved and encouraged me to put my name forward. I am passionate about improving supportive care and integration of services for cancer patients – we need to take a more joined-up approach.

“Part of this is ensuring the consumer voice is heard in health services. The most powerful thing I have experienced in my roles is enabling patients and whānau to tell their stories. At my first meeting of the South Island Cancer Consumer Group, we each shared our experience of cancer. There is power is being able to share that and for health services to hear the diversity of experiences. Similarly, it was a huge privilege for me to be able to host the Mental Health and Addictions Inquiry Panel, when they came to Southern. The generosity of those who gave their voice in order to improve services and outcomes in the future was immense.”

John is encouraged by the development of Te Aho o Te Kahu, Cancer Control Agency. “I hope that it will give direction and consistency to cancer services, particularly given the inequities experienced by Māori and those living in isolated areas. Covid has shown us that systems are not entrenched and we can do things differently – we need to keep this ‘can do’ attitude to make real changes for patients. Central to that will be hearing from consumers at every level of the organisation.”

The South Island Cancer Consumer Group was a long-standing partner of Southern Cancer Network and continues to provide advice on planning and implementation of the regional workplan now Southern Cancer Network has transitioned to being the Southern Regional Hub of Te Aho o Te Kahu, Cancer Control Agency. Southern Regional Hub Manager Nicholas Glubb noted the importance of the relationship with the South Island Cancer Consumer Group. “John has shown leadership by clearly articulating the crucial role of consumers as we’ve worked through the transition to Te Aho o Te Kahu. The Group is a key partner for the Hub as we work to implement the NZ Cancer Action Plan, in particular more equitable, patient and whānau-centred care.”


Southern Cancer Network Joins Te Aho O Te Kahu Cancer Control Agency

 

News
01 Jul 2020

On 1 July, SCN officially became a regional hub of Te Aho o Te Kahu, the new Cancer Control Agency established in December 2019 to unite and lead cancer control efforts in New Zealand. The move will ensure a continued regional presence to help deliver more equitable cancer care across the country, while building on current connections and expanding engagement opportunities.

The SCN team was welcomed to Te Aho o Te Kahu with a pōwhiri at Pipitea Marae in Wellington on 1 July, followed by two days of working through inductions, whakawhanaungatanga, and establishing work processes and programmes.

As a regional hub of Te Aho o Te Kahu, the team will continue to deliver the current regional workplan for 2020/21 as previously planned. Stakeholder groups will also continue through the transition and staff will still be based at the South Island Alliance Programme Office, led by manager Nicholas Glubb. Over time, the four regional hub work programmes will increasingly align to the Te Aho o Te Kahu priorities, for the implementation of the New Zealand Cancer Action Plan.

SCN manager Nicholas Glubb says there’s a huge amount to be done to improve cancer outcomes and he is excited by the challenges ahead. “Being part of Te Aho o Te Kahu means we can be more joined-up nationally in our efforts to address inequities in cancer outcomes. We want to continue to offer strong support to the South Island cancer sector to be the best it can be, and to ensure patients and whānau have the best possible experience across the South Island.”

The national Cancer Control Agency was established in December last year and was gifted the Māori name Te Aho o Te Kahu, by Hei Āhuru Mōwai, Māori Cancer Leadership Aotearoa. The name, meaning ‘the central thread of the cloak,’ was developed in response to feedback from people living with cancer and whānau Māori.

Waiting to be called onto Pipitea Marae for the Te Aho o Te Kahu powhiri

 


Cancer Journey Leads To Passion For Service Improvement

 

News
09 Dec 2019

South Island Cancer Consumer Group member, Isobel Stout

Following a stage three cancer diagnosis in 2014, six months of chemotherapy, five weeks of radiation and a double mastectomy, Isobel Stout felt lost when her treatment was complete.“

After such intensive interaction with medical staff for so long, suddenly you’re on your own.

So, you think – now what? You don’t quite know what to do next or where to go,” she says. “It’s understandable that the clinical side of things must finish at some point, but I felt there was a huge amount of aftercare needed that just wasn’t being provided.”

Eager to share her experience and help in any way she could, Isobel attended the Cancer Care at a Crossroads conference in Wellington earlier this year where she bumped into the now former chair of the South Island Cancer Consumer Group, Marj Allen. “I was chatting with Marj about how I could put my 10 cents worth in as a consumer, rather than just writing letters to DHBs. That’s when she told me the South Island Cancer Consumer Group was looking for more members, so I applied, and here I am.”

Isobel, who is a Senior Environmental Health Officer at Christchurch City Council, said being a part of the group has been a rapid learning curve. “It’s a tremendous opportunity to learn from others in similar situations, which I think is where our strength comes from. We are a diverse group and while the one thing we have in common is that we’ve had cancer, we all have really different backgrounds and perspectives, which is enormously valuable. I learnt very quickly that it’s not about me and my story – it’s about focusing on the collective issues.”

Isobel also became involved with the charity Pinc and Steel Cancer Rehabilitation Trust and even biked up Coronet Peak Road to fundraise for the organisation. “I would love to see the amazing services provided by these charities picked up at central government level and integrated into the whole care package. Post-treatment care is just not funded, resourced or focused on enough and we really want to change that.”

The South Island Cancer Consumer Group is currently working with the Southern Cancer Network, part of the South Island Alliance, to increase consumer engagement and further enhance patient-centred care. Some members of the group are assisting with quality improvements projects that have been initiated as part of the Health Quality and Safety Commission’s co-design programme, which involves consumers as part of the project team.

One of the projects involves exploring what support services could help cancer patients at their appointments. The idea came about when a woman living on the West Coast had to commute to Christchurch for regular treatment, but her family couldn’t accompany her. English was not her first language and the Cancer Society found a volunteer to attend appointments with her, providing company and support, as well as assistance with any language issues. “It’s just being a supportive ear or making notes or prompting questions at consultations, that sort of thing. It can be really hard to think straight when you’re talking to the specialist, so an ongoing service offering to pair up patients with potential advocates and support people would be invaluable for some people.”


Southern Cancer Network Consumer Profile

News

26 Aug 2019

Ken Cook, of Southern Cancer Network’s South Island Cancer Consumer Group.

After a lifetime managing and owning various businesses in the motor trade, Ken Cook did not expect to spend his retirement talking to men about getting their prostates checked – but after surviving prostate cancer 14 years ago, Ken is busier than ever working to raise awareness of prostate cancer.

Ken first experienced cancer 25 years ago when he had a lump removed from his back. “My GP cut it out and I thought little more of it until he called me back in. I was shocked to learn it was a malignant melanoma and I had to have further surgery to remove the melanoma and some lymph nodes. Luckily, the cancer was all removed, and I was able to continue on with my life.”

However, when Ken began to have difficulty with urinating he returned to his GP and after PSA test and a biopsy, he was diagnosed with prostate cancer. Ken says following procedures to implant gold markers that help to target the radiotherapy, he underwent 37 fractions of radiation. “I’m very pleased to have been cancer-free since. It was a difficult time – the process is unpleasant and the waiting is not easy. But again, I was lucky. I have a PSA test every year and I am able to continue on with my life.”

Ken’s wife Lyn has been through breast cancer. They describe themselves as fortunate to have survived all the treatment and want to be able to help others experiencing cancer. For Ken, this started through attending a prostate cancer support group. Six years ago, he was shoulder-tapped to start organising the Dunedin meeting. “We get around 50 men attending some of our support group meetings and we always have a guest speaker along to provide information on the latest developments in the treatment of prostate cancer.”He says the support group meetings held every two months are invaluable for those going through the prostate cancer journey. “It really helps them to know they are not the only one going through this experience.”

Ken also attends a wide range of community and club meetings to speak about the signs and symptoms of prostate cancer, and the importance of all men over 50 years having an annual PSA check. “Two men die every day of prostate cancer in New Zealand, but if this cancer is detected early, we can get better outcomes. By going out and speaking to a wide range of groups, mostly ones that are male dominated, we can hopefully increase the number of men who ask for PSA checks.”

Ken’s work in the community has also led to him being elected to the Prostate Foundation Board of New Zealand Inc. and become a member of Southern Cancer Network’s (SCN) South Island Cancer Consumer Group and the New Zealand Cancer Consumer Group. SCN partners with the South Island Cancer Consumer Group to ensure the patient voice is at the forefront of work planning and implementation. Being involved in the consumer groups offers Ken the opportunity to look at different parts of cancer care, and provide patient perspective to policy and service improvement: “I enjoy being able to discuss the bigger issues affecting people with cancer, and making sure patients are listened to.”

Ken, now 85, has two more years on the Prostate Cancer Board, at which point he plans to step down – but it would be a reasonable guess that he will never stop his work to raise awareness of prostate cancer.

 

 

 


Improving Cancer Services Through A Consumer Voice

 

News
25 Sep 2018

Barbara Bishop, of the South Island Cancer Consumer Group.

A consumer voice brings diverse experiences and insights into health care planning – helping to ensure services meet the needs of the public.

“Some people don’t have a voice or are not capable of making decisions, so it’s really important to have someone overseeing improvements, ensuring they are of the greatest possible benefit to the consumer,” says Barbara Bishop, who joined the South Island Cancer Consumer Group (SICCG) a year ago, to provide a voice for the patient. “I’m passionate about the consumer getting a fair deal and a big believer in a system that’s fair for everyone – no matter where they live.”

SICCG works in partnership within the Southern Cancer Network (SCN), and the consumer perspective provides an important platform; guiding development, implementation and improvement of cancer services in the South Island.Barbara has a lot to offer the consumer role, given her experience in health care, on both a personal and professional level. Originally from the UK, she has a nursing and social work background. In 2005, she was diagnosed with an aggressive form of breast cancer. At the time, the life-saving drug Herceptin was unavailable, so Barbara started a successful campaign to receive it. In 2007 she wrote a book, The fight of my life, before moving to New Zealand the following year.

During her time with SICCG, Barbara has been involved with the South Island Radiation Oncology Partnership Group’s review of the early breast cancer treatment variation. A standard of care was under development for the South Island and has since been endorsed. Barbara says she can see the benefits for patients and families in the proposed plan. “From a consumer perspective and based on the information provided, it looked like a very effective way of moving forward and reducing areas of variance in treatment delivery for radiation therapy.

“It’s clear that the proposed plan will enable treatment centres to provide a better service to the public by reducing waiting times, resulting in earlier treatments and savings in treatment planning times and clinic costs – without compromising consumer care or outcomes – which is the ultimate result for our people, as well as the health system.”

Marj Allan, Chair of SICCG, says members of the group are engaged in a number of ways, including contributing to focus groups, policy and planning, as well as providing representation on specific projects. “Whether it’s providing recommendations or support for developing pieces of work, they promote the integration of patient and family experiences.”

SICCG is connected to local cancer networks and DHB consumer councils; and is available for consultation on cancer consumer-related issues. The group can be contacted through SCN.


South Island Alliance Vacancy Scn Project Manager

News
16 Aug 2018

We are looking for a vibrant self-starter to develop and manage projects as part of the Southern Cancer Network (SCN) team. SCN works in partnership with the South island DHBs to deliver a programme of cancer services improvement works and is one of four regional cancer networks, aligned to both Ministry of Health cancer services priorities and the Te Waipounamu Regional Health Services Plan.

Permanent/Full Time

Location: Christchurch

Closing Date: Tuesday 28 August

Click here for information about this role and apply 

 


Meet The Team Rachael Crombie Southern Cancer Network

News
25 Jun 2018

Southern Cancer Network project manager Rachael Crombie enjoys the frosty scenery in beautiful Central Otago.

Rachael Crombie’s connection with the South Island was one of the attractions of her project manager role, resulting in a move from Wellington to join the Southern Cancer Network in Christchurch last year. “I have family in South Canterbury and Golden Bay; and I also studied physiotherapy at Otago University – so I feel quite connected to the south,” she says.

Rachael’s career started as a physiotherapist at Masterton Hospital, where she was born, and she’s since lived and worked in several places around New Zealand and overseas. “This role seemed a fantastic opportunity to bring together my study and experience around supportive care – palliative care, rehabilitation and public health.”

Rachael has worked across a range of health and education settings during her career, including as a mobility instructor for the Blind Foundation, and managing and coordinating projects at Hospice New Zealand. “Cancer affects people in all parts of their lives and this SCN role provides an opportunity to work with DHBs, and a wide range of organisations that support patients with cancer and their whānau in the community. Although the issues being tackled are often complex, a strong patient and whānau centred approach is evident when talking to health professionals across the South Island.”

Prior to making the decision to move south, Rachael provided project support to the development of a national contract through another DHB regional alliance, TAS. While her parents, sister and two nephews still live in Wellington, she visits as often as possible and is enjoying hosting family and friends’ visits to Christchurch. “I enjoy exploring New Zealand, and I feel lucky to be able to explore the South Island again. Some recent highlights have included curling in Naseby, the Gold Guitars in Gore and visiting the Kura Tāwhiti conservation area. I’ve also done a bit of tramping in the hills around Canterbury – I thought Wellington had hills, but it’s a whole new level in Canterbury!”  

Based at the South Island Alliance Programme Office (SIAPO), Rachael’s role includes supporting and integrating the work and perspectives of Te Waipounamu Māori Leadership Group for Cancer and and South Island Cancer Consumer Group, as well as supporting service development initiatives to improve health outcomes for cancer patients and their whānau. “Given the barriers the South Island faces due to its large geographical spread, there is some innovative work that’s being done to support understanding and access to services, when and where people need it.”


New Chair For Southern Cancer Network

News
28 May 2018

Todd Hore, General and HPB surgeon at Christchurch Hospital, is the new Chair of SCN Steering Group

The South Island Alliance is pleased to announce that Mr Todd Hore, General and Hepatopancreatobiliary (HPB) surgeon at Christchurch Hospital, has been appointed Chair of the Southern Cancer Network (SCN) Steering Group.

Todd’s appointment follows the resignation of Dr Steve Gibbons as Chair, after nearly a decade in the role. Todd is the clinical lead for the Faster Cancer Treatment (FCT) programme for Canterbury DHB, supporting improvement work in meeting the cancer treatment target. He has also made a strong contribution to the Multidisciplinary Meeting (MDM) System and development work for Canterbury DHB.

The role of Chair is a key leadership role for the network. It is responsible for guiding the Steering Group in its consideration of priorities for cancer services improvement work across the South Island, along with supporting and directing the SCN team in monitoring and managing that work; and ensuring strong connections between the network and its stakeholders across the South Island.

In announcing Todd’s appointment, which follows endorsement from the South Island DHB CEOs, SCN manager Nicholas Glubb says Todd has confirmed his commitment to supporting the SCN programme of improvement work, including the focus on improving equity of outcomes for Maori, rural and deprived populations across the South Island. “The SCN team are very much looking forward to working with Todd to further strengthen the work of the network in improving cancer care across the south island.” Todd takes up the role of Chair with immediate effect, and the next meeting of the Steering Group is in August 2018.
 


Meet The Team Nicholas Glubb Scn Manager

News
27 Feb 2018

Nicholas Glubb, Southern Cancer Network manager 

Next month will mark 40 years working in health for Nicholas Glubb, who began his career as a student psychiatric nurse at Cherry Farm Hospital in March, 1978.

Based in Dunedin, the role eventually led to helping manage change in a number of mental health and disability services around the country.

Nicholas joined the South Island Alliance as Southern Cancer Network (SCN) manager in August last year. His experience in the sector makes him a great fit for the role. “I had a predominantly clinical career until the early ’90s,” he says.

“After moving into nursing clinical leadership positions, opportunities arose for me in operational and service development roles, where I was involved in the reorganisations of mental health/disability services – one of those led to the closure of Cherry Farm Hospital and people with long term mental health conditions living more normal lives at home with community-based care.”

He says experience in direct patient care in the clinical years of his career stood him in good stead for management roles, “in particular around understanding what can make a difference to people’s health and wellbeing. And that’s the hook into SCN – which is all about better outcomes for people who experience cancer and supporting clinicians to ensure that the detection, diagnosis and recovery is both timely and effective – as well as a better understanding of the patients and their family’s experience.”

In 2003, Nicholas moved to Palmerston North to take up a mental health and disability management role, which included management responsibility for the closure of the Kimberley Centre – New Zealand’s last big institution for people with an intellectual disability. This was followed by picking up management roles outside of mental health, including women’s and child health.

His entry into cancer services began in 2009, managing regional cancer treatment services for the MidCentral DHB, providing non-surgical cancer treatment across six DHBs in the North Island. “During this time I developed an understanding of what was involved in leading and managing non-surgical cancer services. And my involvement with the Central Cancer Network (CCN) culminated with me getting involved with the leadership of its governance group, working alongside the CCN manager over improvement work.”

When the chance to work for the South Island Alliance came up, he says it was an opportunity to have a more dedicated focus on improving cancer services – as well as move home. “I have four brothers and a sister living here in Christchurch, as well as extended family, so it’s been fantastic living close to them again.” A good portion of Nicholas’ spare time is spent maintaining the reasonably-sized, well-established garden at home with his partner, Yhodie, who is a graphic designer and gym instructor.

Nicholas works alongside project managers to ensure progress is being made on established priorities from the regional Health Services Plan, as well as building relationships with key stakeholders across the South Island. “I’m really fortunate to have a team of four very capable project managers with complementary sets of knowledge, skills and experience, along with the network clinical director, Dr Shaun Costello, who is both supportive and action oriented.

“Another key part of my role is understanding what’s important for clinicians working in cancer services, because a lot of our improvement work is focused on ensuring they are set up for success in relation to what they do. This relates to infrastructure and systems, and ways of working together regionally – in terms of consistent, evidence-based approaches to cancer treatment and care.”


Guest Editorial Marj Allen Chair Of The South Island Cancer Consumer Group

News
31 Oct 2017

Marj Allen, Chair of the South Island Cancer Consumer Group

Marj Allen describes herself as a thriving cancer patient who has regular experiences within the health system. She is also Chair of the South Island Cancer Consumer Group. Marj is passionate about the role of consumers in health services and believes they bring a unique perspective to the decision-making table. In this month’s guest editorial, Marj shares her experience as a consumer representative…

I have been a cancer consumer for over 14 years. I guess you would call me a thriving cancer patient whom has regular experiences within the health system. Living rurally for a large amount of this time has also shown me a different perspective from city living, where the health system is closer. I decided I wanted to give back to the system and I had completed the Cancer Voices training many years ago.  

I’m on many groups both nationally and locally. These include the consumer panel for the Health Quality and Safety Commission; the South Island Palliative Care Workstream; Cancer Consumer New Zealand; the Southern Cancer Network Steering Group; ACP Planning Advisory Group; and a patient experience advisory group. I am passionate about the role of consumers in health services and as stated in the New Zealand Health Strategy (Ministry of Health, 2016) ‘a people-powered system will involve people not only as users of health services but also as partners in health care. It will support and equip all New Zealanders to be informed about and involved in their own health.’

I’m a strong believer in quality data, empowering our patients and addressing inequities right from the coal face. There are some exciting initiatives currently taking place. For example, the national electronic health record is going to be great for consumers and we need to contribute to this being as consumer-centred as possible. There are issues for us in the South Island that need to be further explored and resolved to help drive change and to improve cancer care for the people of the South Island. For example, access to services for people living rurally and the burden of travel are often raised as issues for patients and families in the South Island.   

It’s a privilege to be the Chair of the South Island Cancer Consumer Group. Our team bring diverse experiences and insights and are open to working with groups across the South Island to give the consumer perspective around cancer related areas, and to support improvements in care. We are aware that everyone is patient-centred, however, having a consumer around the table brings that to life and offers a broader perspective to the development of services and decision making.

I strongly endorse and support the participation of consumers on local cancer networks. It provides a really good link to cancer-related activities in an area and contributes to local improvement work. They can speak for the interests of other local cancer consumers and where required can feed into regional and national work with the support of their local network. It offers an opportunity to build strong partnerships for consumers. I encourage you all to help me to take this journey forward and I look forward to hearing your input.