The consumer voice is an invaluable part of health care planning. Providing feedback on what’s working and what needs to be improved from a patient point-of-view, it’s the consumer experience of the health system that will ensure services are efficient, effective and person-centred.
To help shape and improve health services in the South Island, consumer members contribute to a range of different health committees and groups across the sector. Christchurch woman Marj Allan has been sharing her journey within the health system for many years, following a cancer diagnosis. “After my recovery, I wanted to give something back to the system, so I became a consumer voice for cancer,” she says. “At the time I was living remotely on the West Coast, so I had a different perspective to share and I could see how important it was for cancer patients in the community to be supported, particularly older people or those who don’t have family around them.”
Believing she still had a lot more to offer, Marj joined the South Island Palliative Care Workstream (PCW) as a consumer member in 2014. Operating under the South Island Alliance framework, this group comprises clinical leaders and palliative care service providers, and is committed to improving the quality of palliative care services across the South Island. Marj represents a collective consumer voice and is involved in a range of projects, initiatives, and activities relevant to the work of the PCW group.
Marj is also Chair of the South Island Cancer Consumer Group, which provides a link between the two groups. “This ensures a good connection and strengthens the work being carried out in both cancer and palliative care.” Representing consumers for palliative care in the South Island has been an interesting and enjoyable experience, Marj says. “It’s been a real honour to be a part of this group, and fantastic to see how it’s evolved from when it was established to where it is today, benefitting communities across the South Island. It’s a fantastic opportunity to represent both the patient and their families during the palliative care journey – it’s very important for them both to have a voice.”
Being a consumer voice is about listening to and incorporating the views and priorities of consumers, says Kate Grundy, Chair of the South Island Palliative Care Workstream and Consultant Physician in Palliative Medicine, Canterbury DHB. “It is so important for us as a Workstream to really listen to the consumer, as everything we do should be with the patient at the centre. They are the window into what it’s like to be on the receiving end of care.”
Consumer members for palliative care and hospice generally have had experience in palliative care with a loved one, have been a carer themselves, or have been involved as a volunteer in a community setting, she says. “People come into it in various ways, but the one thing they really need is to have the confidence to speak up. As chair, I must provide a safe place for them to share and question. Their input is hugely valuable and appreciated.”
Marj’s three-year term as the consumer member of the PCW has come to an end, so the group is looking for a new member. If you are interested in applying for the role, visit the Palliative Care page for more information and application form.