Get involved > Spotlight on MND > December 2018 > Spotlight on MND: Perspective of an MND Adviser

Spotlight on MND


Spotlight on MND: Perspective of an MND Adviser

We spoke to Jo Fowler, MND Adviser for the MND Association of NSW to find out more about her role and what she does to help people living with MND, their families and carers.


MND Advisors assist people with motor neurone disease connect to the services they need and offer ongoing information to families and service providers as questions arise or needs change.


Jo explained: My role as a MND Advisor is multi-faceted, with every day bringing a new challenge. I currently work part time and am responsible for the Northern Sydney area providing services to about 70 members, their families and carers.


There are so many aspects to my role that I love. From sharing information with my members at our support groups, to seeing them at their multi-disciplinary clinic appointments to just being with them within their homes as they work through their response to this disease… is always a privilege to be invited into someone’s life and I really value and respect the position that I have in their lives.


As well as the work that I do with our members and their families, I also have the opportunity to provide education around MND for health professionals and the wider community. I have spoken to very small groups as well as to large groups and everything in between about MND, its progression and have advocated strongly for the needs of our members.”


Jo is part of a team of 9 part time MND Advisors based across NSW, each with a large geographical area to cover. Together they provide professional and timely support to over 560 registered members of MND NSW free of charge.


Jo said: “We have been told that as an organisation that we punch way above our weight for a small registered not-for-profit organisation that receives less than 15% of its funding from Government.”


An important part of an MND advisors role is visiting people that have recently been diagnosed with MND in their homes.


Jo commented “These people and their families feel their world has been turned upside down and their hopes and dreams have been shattered. We usually sit down together over a cup of tea or coffee and talk through what has recently been happening to them and what they have been told about their illness by their neurologist and other health professionals. My role is to offer timely support, relevant information, guidance, advocacy and to link them with relevant health and community care providers. Subsequent visits occur when their condition is changing or as someone is approaching the end of life. No matter what stage of life’s trajectory they are on, there are always helpful tips and strategies to share with them and their care givers.”


One of the many issues people living with MND are facing across Australia is the roll out of the NDIS and navigating a new system to access the care and support they need. Helping people access Government services are an integral part of the MND Adviser role.


Jo said: “A great deal of my time goes into helping my members link to the NDIS and working out what it is they will need to support them to continue to live independently at home and be able to access in their local community and the services that they will need. The two hour or so pre-planning session takes place in their home and is designed to help them know what they should be asking for. The initial NDIS plan is designed to last for a whole year but we believe a 6 month much better meets need. In an illness like MND, with its relentless functional losses and its unpredictable nature, it is challenging trying to predict accurately how quickly someone’s condition or mobility will deteriorate during this time and what additional equipment items they may need and what professional help may also be required.


Fortunately, MND NSW was involved in the NDIS trial sites which commenced in 2013, three years before the scheme was rolled out. So our MND Advisors are well trained and well skilled to assist our members with the pre-planning process and working out what they will need. So together with the family member and their carers we work our way through a comprehensive form which the person with MND can then use when they first meet with the NDIS Local Area Coordinator (LAC) or NDIS planner.”


MND is a progressive disease which leads to very complex and changing needs. This means every visit is different.


Jo explained: “The first meeting with a person living with MND and their families and carers is one of fact finding, of listening to their story and of normalising what they are telling you. It is also about building rapport as well as providing some practical pathways to care and support and linking them to multidisciplinary as well as palliative care services.


Listening to them and their families and what they have to say both verbally and non-verbally is so very important. Often people bring up the fact that they have a terminal illness; that there is no known cure as yet for MND and that they are going to die. Understandably, this is an incredibly distressing time and as MND NSW Advisors we work through some of these issues with members, particularly around future planning for care, finances and legal considerations.


When we next meet with our members and their families, we find that there can be substantial changes in functional abilities such as mobility, standing or weight bearing or suddenly needing equipment such as hoists or special chairs. Swallowing can often be a difficulty which brings changes to diet and weight. Speech issues may also arise and as MND Advisors we work with our members to find ways to maintain communication, access things such as assistive technologies, nutritional advice or continence support.


Towards the end of our member’s life, we offer support and advice around accessing palliative care, knowing when to call for assistance as well as what to expect as physical needs change.”


The roll out of the NDIS has made a positive difference for many people living with MND, but only those diagnosed when aged under 65 have access to the NDIS.


Jo concluded: “The NDIS has definitely made a difference for many of our members under 65, both in easing the financial burden to families of not having to pay for outside help, personal care assistance, as well as the provision of specialised allied health services, equipment and support coordination.


However, this is not the case for about a third of MND NSW’s members who are over 65. This older group has really been left out in terms of real support. The burden of support is falling to the partners of these members, many of whom are older and frail themselves. It is a hidden group of carers who are in real crisis. Support that is offered under the current home care system is hard to access and when members do manage to get a package it falls well short of what they actually need. It’s heartbreaking. Our association continues to loby to remove the barriers that people living with MND experience and to ensure access to better care.


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