Meeting the needs of people living with MND and their families and carers is a vital part of MND New Zealand’s mission. Our team of 7 MND support team members around New Zealand provide information, support, awareness and advocacy for clients, carers, whanau and the health professionals working with people with MND.
Support team leader Toni Foster shares on the diverse role of MND Support Team Members.
For someone who is newly diagnosed with MND, we may be the first, second or third point of contact for this person or family member or we may become involved at a later stage. We feel privileged to be allowed to share this journey with the person with MND, their family and whanau, and to be invited into their lives. It is up to the person themselves to decide what this support looks like with regards to frequency and type of contact – face to face, email, text or phone call – and this may change several times throughout the journey. We are able to continue to provide support for family and whanau for as long as they would like us to be involved, and can help to link them with bereavement services.
The support team member is able to talk with people about support groups (where they are, when they meet and who attends them – e.g. people living with MND, their carers or the bereaved), so individuals can decide for themselves if the support group is something that they would like to be part of. Some people may prefer to meet with another person with MND on an individual basis, in which case the support team member may be able to facilitate contact with someone who is in a similar situation.
Support through empowerment
We want to empower our clients, family, carers and whanau with information which can help them navigate their way through the health care system and support them though their journey.
Each person comes to us with different needs, desires and wants. Some people want to know everything about the disease and others do not wish to know much at all. We are sensitive to each person’s needs; no-one has the same experience or the same needs.
We have written and online information and resources that we are able to share with clients, their family and whanau, and also information for health professionals. There is information on our MND New Zealand website and links to other helpful websites. Our aim is to provide people with information that will enable them to make informed decisions throughout the journey.
The support team are experienced professionals, with connections to multiple services which can help people at the various stages of MND, from diagnosis all the way to after-care for the families.
We are not part of the DHBs but work alongside each DHB and have built good working relationships with the DHB teams. We have knowledge of how the DHBs operate and can help people to understand and navigate this, and who to contact for help with symptom management, care and function.
We are also able to offer support with applications to the Lottery Commission and other agencies for equipment that is not available through Ministry of Health funding.
We can travel to you
We will always do our best to travel to clients, carers, and families. MND New Zealand support team members make personal contact and can help with any questions people may have.
Some health care professionals might not have prior experience with a person living with MND. Support team members provide written resources, support via technology and can meet with health professionals to assist in providing the best possible care for their clients.
Many of our clients and/or their family/whanau ask what is happening with regards to research and any new trials emerging and ask to be kept in the loop with studies. Our website is regularly updated on current global MND research and news, and updates are posted on the MND Facebook page.
There is so much information out there regarding MND and unfortunately, it is not necessarily all accurate. If you are looking online for information a good starting point is the MND New Zealand website which has a large amount of accurate information and many links to other recommended organisations, agencies and resources.
We also want our clients, carers and their families to know we are just a phone call or email away.