Multiple Sclerosis Clinic in Hunter New England LHD

Multiple Sclerosis (MS) is a disease of the central nervous system (your brain and spine), and while it can affect anyone, is more common in women than men. In Australia there are around 25,000 people living with MS.  With MS, the immune system targets myelin, a protein that coats and protects the millions of neurons in your central nervous system (CNS). This interrupts the messages that flow from neurone to neurone. When this happens people can experience clinical symptoms, like visual changes. Symptoms vary from person to person; no two people with MS are alike. 

Successfully adapting to a Multiple Sclerosis (MS) diagnosis starts with knowledge. By learning about MS and how to live well, you can reduce its impact on your life.

Our model of care focuses on supporting you to self-manage. Over time, you'll build the skills, resources, and networks to help manage MS. Don’t worry if it doesn’t happen straight away. The MS Clinic recommends reliable, evidence-based websites and resources. While this list isn't exhaustive, it’s a great starting point:

• 'Understanding Multiple Sclerosis' is a free online course to help improve your understanding and awareness of MS.
• MS Plus, formerly MS Limited and MS Society, MS Plus offers a wide range of emotional and practical support, including allied health, employment services, NDIS services, expert advice, well-being programs, and peer support.
• Our own Professor Lechner-Scott has contributed to a podcast designed for people newly diagnosed with MS.

Taking one of the many drug therapies available will likely reduce the risk of future MS attacks, along with adopting some healthy lifestyle choices (like eating well and getting regular exercise). Choosing the right therapy can be difficult. Seek advice from your support team, starting with your MS specialist doctor and nurse. Use the questions below to consider the important factors about taking these medications.

Keep track of any changes in the management of your MS since your last appointment. This includes updates to medications, any concerns, or new symptoms you've experienced. Bringing this information to your appointment helps you prioritise what to discuss with the MS team.

If you have any paperwork, such as an NDIS application, IPTAAS form, referral, or results like MRI or blood test results, you can email or fax them to us before your appointment.

Handy documents: 

• Preparing for your appointment (PDF 737.61KB) (PDF 737.61KB) 
• Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS)
• How to get the most out of your appointment

You can email your paperwork to hnelhd-msclinic@health.nsw.gov.au

To make a referral for outpatient review in the MS Clinic fill out the Neurology Referrals - Community HealthPathways Hunter New England

The current approximate waiting time for an initial appointment is 3 to 4 months and 8 to 9 months for subsequent appointments.

Visual arts have long been recognised to improve the experience of chronic disease, through self- expression and camaraderie of creating art with other people. This type of therapy or support has been embraced by the Hunter MS Service, in collaboration with the John Hunter Hospital’s Arts for Health Programme and Hunter Medical Research Institute (HMRI). If you would like to know more about the next workshop and exhibition, email hnelhd-msclinic@health.nsw.gov.au

The MS Advisory Group aims to inform, influence, and support the MS Clinic, while also guiding the direction of current and future research projects. The group will recommend policies, advocate for support mechanisms, and address issues of equity, diversity, and inclusion for the John Hunter Hospital (JHH) MS Clinic.

This will be achieved by:

• Creating a communication channel for patients and medical staff to raise issues, concerns, and feedback on the clinic's day-to-day operations.
• Sharing ideas and opinions on the current and future direction of research, including funding opportunities, mentoring, infrastructure, and educational needs.
• Acting as the key consultation and advocacy group for the JHH MS Clinic.
• Providing unified advocacy across the partnership with the Hunter Medical Research Institute (HMRI), the University of Newcastle (UoN), and the Hunter New England Local Health District on behalf of Early and Mid-Career Researchers (EMCR). This includes:
  • Offering advice to HMRI and its strategic partners on issues specific to EMCRs.
  • Engaging with key stakeholders to promote leadership opportunities, training, and research sustainability for the JHH MS Clinic.
  • Advocating for visibility and awareness of JHH MS-driven research through the Institute Director, partners, and the community.
  • Making recommendations to the Institute Director and the UoN College of Health Research Committee to support strategic initiatives that benefit the JHH MS Clinic.

To get in touch with the MS Advisory Group email contact@hne-msag.com.au.

Initial appointments last between 1 and 1 hour 30 minutes. Please bring your reading glasses if needed, comfortable shoes and clothing for the examination, and any paperwork related to your appointment. Follow-up appointments typically last around 30 minutes.

The clinic may run late at times, as some patients require extra time. We appreciate your patience and understanding for those attending the same session.

If you have forms that need completing, we may not have time during the appointment. You can send them to us beforehand, or they might need to be completed after the appointment and returned to you by post.

• Has the MS team recommended a treatment over others and why have they chosen this one?
• Are there factors personal to me why this drug would be a better or worse treatment compared to others?
• Is there written or online information I can read?
• What will the medication I choose cost?
• How is my preferred medication given or administered?
• What monitoring has to be done with my chosen medication?
• Can I still travel, work, drink alcohol, have children, or do other activities while taking my prescribed medication?

If this is your first visit, please allow at least 2 hours for your review. You'll see the MS nurse as well as the specialist. The nurse will orient you to the visit and be able to answer any questions you may have. Support people are encouraged to attend, as are children. We sometimes run overtime, so your patience is appreciated.  If you have a copy of your referral and/or related test results bring them along too. Wear comfortable, loose clothing and comfortable shoes.

If your next visit is a follow-up (also referred to as a subsequent) visit you will run through the pre-visit assessments with the nurse. These include your: 

• weight
• blood pressure
• pulse
• walking speed
• cognition assessments. 

They take about 10 to 15 minutes to complete so please arrive a little earlier than your appointment is scheduled to do them.

Over the course of treatment and usually by the 1st or 2nd review your MS team will have a good idea if the treatment is the right one for you. The aims for your drug treatment are to reduce the number of clinical attacks you experience, reduce the number of new lesions on MRI and slow or minimise the amount of disability you have.

The way we measure these goals is with yearly MRI scans, twice yearly clinical examinations and of course, your feedback.

In between appointments you may experience some symptoms that reflect changes to your MS.  Sometimes it is difficult to know if MS is the cause of new symptoms or if there is something else going on, not associated with MS.  If you are concerned or even just not sure, call the MS nurse (02) 4921 3540 or email msclinic@health.nsw.gov.au for advice. The nurse's role is to triage new symptoms and help navigate the most appropriate next steps.

To confirm a new relapse the following criteria should be considered:

• the symptoms are new neurological symptoms or a significantly worsening of previous symptoms
• the symptoms need to last for at least 24 to 48 hours
• the symptoms need to be 30 days from the last relapse
• there must be no other explanation for the symptoms.

It's almost always a good idea to be seen by your MS care provider when you are relapsing. We can arrange treatment for the relapse if it is indicated and refer for any assessments that are indicated, for example, a magnetic resonance image (MRI).  Visit the MS Trust for more information on MS relapses. 

In MS, relapses can happen, even if you are taking a MS drug, eating well, sleeping well, managing your stress and getting plenty of exercise. Wondering about the next relapse is normal but not always helpful.  Any new relapse will become apparent in due course, and we will be here to help. The usual features of a relapse are:

1. you have new or significant worsening of neurological symptoms
2. these symptoms have lasted at least 24 to 48 hours
3. other reasons for the symptoms are excluded, for example, infection.

If you suspect relapse give us a call to triage these new or worrying symptoms. From there we can work out what to do about them. Not sure it is a relapse? Call anyway, better to call more often than not often enough. You can phone (02) 4923 6253, triaging new symptoms is open Monday to Fridays, 9am to 3pm.

If you're having trouble with getting someone to speak to from the clinic on the usual phone number, please follow up with an email to hnelhd-msclinic@health.nsw.gov.au or call the Neurology Department main number on (02) 4921 3490.

After your initial script we will provide you a script for your MS medication at your face-to-face appointment. Subsequent scripts can be provided by your General Practitioner. Infusion therapy scripts will continue to be provided by us, including outside the appointment time.

Ask your GP to fax to (02) 4921 3488.  You can call the clinic on (02) 4921 3540, after the referral has been faxed to see if we have received it. It will be triaged, and an appointment posted to you.

The results of any of your investigations will be copied to your GP. We will also provide them to you at your next appointment with us. If you have concerns, call (02) 4921 3540 or email hnelhd-msclinic@health.nsw.gov.au