The MS Advisory Group plays a vital role in addressing the challenges faced by the Multiple Sclerosis (MS) clinic, ensuring robust guidance for research projects and proposals.

About us

In 2018 the MS Advisory Group for Newcastle, the Hunter and the Hunter New England Health area was established to help address issues impacting the MS clinic and to help strengthen the direction of research projects and proposals. The MS Advisory Group provides an important link between the John Hunter Hospital Neuroimmunology clinic and consumers.

Recognising the pivotal role of consumers in the development, implementation and evaluation of health and medical research, the MS Advisory Group represents over 1500 patients of the John Hunter Hospital Neuroimmunology clinic. We provide key input for the development, implementation and evaluation of health and medical research.

What we can help you with

Sharing Your Feedback: Whether it's about the clinic's services or research projects, we provide a safe space for you to share concerns, issues, and suggestions to shape better outcomes.
Connecting with Resources: We help connect you to supportive resources and information, both within the John Hunter Hospital Neuroimmunology Clinic and the broader MS community.
Advocacy Support: We can guide you in effectively voicing your needs and concerns to clinic staff and researchers, empowering you to advocate for yourself.
Networking and Events: Stay informed about opportunities to meet with others in the MS community, attend educational events, or participate in research.

What we do

Consumer-Centric Research Feedback: We offer valuable insights into current research projects from a consumer's perspective, ensuring that research remains relevant to those it aims to serve.
Research Recommendations: By listening to consumer needs and interests, we propose recommendations and ideas for future research projects, aligning them with the evolving priorities of the MS community.
Research Grant Input: We contribute to the development of research grant applications, adding the consumer voice to funding efforts.
Document Review: We provide constructive feedback on research-related documents, helping to refine and improve the research team's materials.
Making the Clinic Visible: As representatives of the MS Neuroimmunology Clinic, we advocate in the media, at events, and in meetings with other organizations.
Consumer Advocacy: We offer a channel for patients to voice their concerns, issues, and feedback regarding the clinic, making sure their voices are heard.
Research Feedback: We facilitate a platform for patients to share their thoughts on research projects, fostering transparent and inclusive communication between patients and researchers.

What we don't do

Direct Medical Advice: We do not provide individual medical consultations or treatment recommendations. For personalized medical advice, please consult your healthcare provider.
Clinical Decisions: We do not influence or override the clinical decisions made by the medical team at the John Hunter Hospital Neuroimmunology Clinic.
Patient Diagnosis or Treatment: We cannot diagnose or treat MS or any other condition.
Legal Advice: We are not able to offer legal advice on matters related to healthcare access, insurance, or research participation.
Personal Dispute Resolution: We cannot intervene in individual disputes between patients and healthcare providers.

Who we are

Amanda

PATIENT – Good in marketing

Jess

PATIENT – representing the rural folk and good in communication

Bio

My name is Jessica Scott. I am a proud mum of two teenage boys (yay, I’ve almost got them to adulthood), and wife to my hubby Nigel. My family has lived in the beautiful Upper Hunter for 20 years. I passionately love my job as a Registered Nurse in rural hospitals and have experienced most areas of rural nursing including emergency care, disabilities, mental health, paediatrics, operating theatres, medical/surgical wards, and oncology/cancer care.

Throughout my career I have gained a great appreciation of the challenges we face living in rural areas, the isolation, the lack of specialised care, the effects of travel and distance and the minimal allied health and supportive services. On the other hand I can see many the benefits of “living bush”: a close tight-knit community, the benefits of telehealth and living a quiet family lifestyle.

I was diagnosed with Multiple Sclerosis (MS) 17 years ago. The official results came in on Christmas eve while I was working at a hospital. I have had many relapses over the time, experienced multiple treatments and DMTs, managed to look after my family and always kept working (reduced hours). I am forever modifying how I do things to enable me to continue giving back to the community and truly helping others.

I have been under the care of Jeanette Lechner Scott and the MS Neurology Clinic since I was diagnosed, being almost one of their original patients.

I proudly belong to the MS Advocacy Group. I possess genuine insights into patient needs, effective communication, the challenges faced in rural conditions, and the impact of MS on employment, family dynamics, and personal well-being. I proudly look forward to supporting and listening to you.

Sommer

PATIENT – Good in organising

Bio

I’m Sommer Walters. I was diagnosed with Relapse Remitting Multiple Sclerosis in 2015 after what felt like years of experiencing numerous MS symptoms with no medical answers. One day, life went downhill, and I was admitted to the John Hunter Hospital with paralysis on the right side of my body. I spent many months doing rehabilitation to regain movement and function. I have since had many relapses and have more recently pursued my desire to be a mother and commenced multiple rounds of IVF to conceive my beautiful daughter, Hayze.

As a social worker and counsellor, I am passionate about advocacy, education and research. I have worked for 25 years in education, community justice, child protection, and mental health counselling. I started engaging with MS Australia and other entities in 2015 to promote awareness and education about this disease. I gained profound joy in telling my story and seeing its impact on other MS patients and carers. This often-invisible disease is challenging to navigate, and promoting awareness is now a significant part of my story.

In 2017, I expressed my interest to Dr. Jeanette Lechner-Scott about my desire to understand the functions of our local John Hunter Hospital MS Neurology Clinic and the significant research that she and her hospital/ research team conduct. In 2018, Dr. Lechner-Scott put together The MS Patient Advocacy Team, and we patient advocates commenced our crusade to promote further community education, advocacy, and research.

When not working in the community and counselling fields, I love spending time with my partner and our two beautiful girls. I enjoy travelling and sharing my experiences with friends, family and the disability community. I look forward to meeting more of the MS Clinics’ patients and carers and working together to promote and assist our local district.

Nicole

PATIENT – good with people

Aaron

PATIENT – Knows many things

Christoph

PATIENT – Good in all things design

Interested in becoming a part of the MSAG?

We welcome new members to the MS Advisory Group. If you

are a patient with MS or caring for a person with MS
live in Newcastle, the Hunter or in the Hunter New England Health area

please fill in the form below to submit your expression of interest to join the MSAG.