Chronic disease management 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.

The MS Clinic team combines the resources of the John Hunter Hospital and Hunter Medical Research Institute and can help with support beyond diagnosis and treatment. The team is multidisciplinary (medical, nursing, administrative and researchers) with streamlined access to other care providers, both public and privately based, to holistically support the person with neuroimmunological disease.

The MS Clinic appointments can include preparation of NDIS Access Requests, Disability Support Applications and Fitness to Drive Specialist Assessments.

For those travelling long distances to come to the MS Clinic, the Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) can help with some of the costs associated with attending your appointment. Your specialist can help you complete an IPTAAS application.

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) 
• 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.

Phone: (02) 4921 3540

Fax: (02) 4921 3488

Email: hnelhd-msclinic@health.nsw.gov.au

Post: Locked Bag 1, Hunter Regional Mail Centre, 2310 NSW

The MS Clinic is located at Northblock John Hunter Hospital, Lookout Road, New Lambton Heights NSW 2305 and operates Mondays to Thursdays, on Fridays it operates from Belmont District Hospital at 16 Croudace Bay Road, Belmont NSW 2280. 

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, foe 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

Hunter Integrated Pain Service (HIPS) aims to support people with chronic (long term) non-cancer pain. The multidisciplinary team at HIPS use an evidence-informed, whole person approach to help patients understand more about pain and develop their own recovery plan. The whole person approach focuses on 5 key areas: 

• biomedical
• mindbody
• connection
• activity
• nutrition.

The HIPS team includes staff from: 

• clerical
• nursing
• physiotherapy
• psychology
• doctors
• liaison psychiatry
• pain medicine.

The Acute Pain Service at John Hunter Hospital is connected to HIPS and manages pain following surgery or trauma.

HIPS collaborates closely with John Hunter Hospital's Complex Children's Pain Team and Drug and Alcohol Clinical Services (DACS). It also works alongside the Palliative Care team at Newcastle's Calvary Mater Hospital.

HIPS has a strong focus on research and partners with the University of Newcastle and Hunter Medical Research Institute.

HIPS provides a referral service for the Hunter New England region and information regarding this is best accessed via HNE HealthPathways. HIPS requires a medical referral from GP or specialist.

Referral form (PDF 50.22KB) can be downloaded and faxed to (02) 4922 3893.
 

Hunter Integrated Pain Service office hours are between 8am and 4.30pm, Monday to Friday. We are closed on public holidays. Your call or email will not be responded to outside of these hours. If you need emergency or crisis support, there is help available. You can present to your nearest emergency department, contact the Mental Health Line on 1800 011 511 or Lifeline on 13 11 14.

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Video transcript

Tame the beast

Introduction
Once upon a time, all the lands were fraught with persistent pain. So widespread was this affliction that one in four people experienced it. The pain lasted for more than three months; it shadowed their daily lives, held them back from everyday activities, and the interventions they tried proved useless. "Hey pain, go away! We've tried it all but still you stay, moving less, taking pills, knives and needles, and still we're sore. We can't take no more! No more!" But the pain remains like a loyal companion. The people's hopes faded, and they became resigned to living with the pain. Only now, the pain was a beast.  

Then along came a group of researchers, of which I am one. Back off, big fella! I'm Professor Lorimer Moseley, and I'm a pain scientist. 

What is pain
Pain scientists are starting to think differently about pain and its causes, and we're making exciting discoveries, like how the way you think about your pain can change the way it feels. Over the next few minutes, I'll help you to understand your pain. Understanding is important because it can change how much things hurt, how much your body can do, and it can help you to tame the beast. 

First, trust me about this: pain is not an accurate measure of tissue health. Pain is a protector. By making unpleasant feelings, your brain changes your behaviour so you can avoid injury or your tissues can heal. Sometimes, pain is not helpful, like phantom limb pain. You don't expect a missing limb to ache, but it does—and the pain is very real. 

So how do we explain this? Well, pain is a warning signal from your brain that depends on credible evidence to say your body needs protecting. Sometimes pain is too protective, and you get unnecessary warning signals. Pain scientists now understand that there are many ways our nervous system ends up reducing unnecessary warning signals. Take conditioning, for example. Think of Pavlov's dog. Every time food was offered, Pavlov rang a bell. Of course, the dog would salivate seeing the food. This went on for a while, eventually the dog was conditioned to salivate for the bell alone. 

How does pain work?  
Well, conditioning is just one of the ways your body learns pain. The longer your nervous system produces pain, the better it gets at producing it. Your body learns pain. So, what feeds this beast? Well, let's look at how pain works. In your body's tissues, there are specific neurons which normally only respond to harmful stimuli—whether mechanical, chemical, or thermal. When they are activated, they send a warning signal to your spinal cord, which can in turn send the signal to your brain. 

This activity in neurons is called nociception, and it's happening all the time, but only sometimes results in pain. Most of the time, the brain protects you with other things, like movement. Once the warning signal reaches the brain, the brain makes sense of it based on the information arriving and a vast amount of information already stored. If there's good reason to think protection is required, then your brain makes pain. One of our amazing discoveries is that you can have pain without any physical stimuli. Thoughts and places might activate the warning signals, and the pain feels exactly the same. 

It's not just your brain—your spinal cord also learns how to generate unnecessary warning signals. So, how do you know when your nervous system is learning pain? You may notice if your pain spreads or comes on without warning, your body feels odd, and it's hard to move properly. Your pain changes quickly with your mood, and small annoyances can set it off. Old injuries start to hurt again, you're more sensitive to stimuli, and the longer the pain goes on, the more all of this occurs. 

The old way we understood pain could not explain these things and left many sufferers feeling like no one believed it was real, or that for it to hurt so badly, there must be a major tissue problem. But we now know how persistent pain happens.  

So, how can you tame the beast? Pain is a very personal thing. There's no one-size-fits-all solution, and while you probably have well-thought-out coping strategies, it's time to take a new approach to dealing with and reducing your pain—one that focuses on retraining your pain system. 

This might mean testing yourself physically and moving more than you normally would. Being honest about your current attitudes and beliefs can also help, as can asking your health professional new questions like: "How do I know if my pain system is being overprotective?" "How do I retrain my pain system to be less protective?" "How do I know if I'm safe to move?" 

So be brave and have hope, because it is possible to tame the beast. Visit our website for more information and questions to ask your health professional - tamethebeast.org.

Guided audio exercises 

Other resources

• Whole person approach flyer  (PDF 94.56KB)
• Mindbody workbook (PDF 621.82KB) 
• Pain recovery plan (PDF 119.42KB) 
• Our mob 
• Hunter Integrated Pain Service statement on opioids (PDF 345.37KB) 
• Hunter Integrated Pain Service statement on medication use for neuropathic pain (PDF 226.43KB)

The first step is to attend a 90-minute introductory group seminar called ‘Introduction to HIPS’. This seminar is available either in person at John Hunter Hospital or as an online webinar. Sessions are held at 10am in the morning, with limited afternoon sessions at 5pm. Led by a pain medicine specialist, the seminar introduces the whole-person approach to pain management recommended by HIPS. This approach focuses on gradually reducing dependence on medical treatments and adopting more effective strategies. The information provided will help patients make an informed decision about whether to continue with HIPS.

The next step is typically a 3 hour assessment and planning group workshop, held in person at the John Hunter Hospital Campus. The workshop is led by a pain medicine specialist, physiotherapist, and clinical psychologist. During the session, the HIPS team will help patients identify factors contributing to ongoing pain and develop a personalised recovery plan. This plan may include strategies for medication, physical and emotional health, diet, and lifestyle. Most patients who choose to continue with HIPS will progress along the HIPS group pathway, while others may opt to work with health professionals in their local community.

The active pain treatment group program involves attending the John Hunter Hospital Campus or online. The group runs for one half day per week for 6 consecutive weeks. The program is run by a physiotherapist, a nurse and a clinical psychologist. The program is designed to identify, develop, practise and finetune active strategies and is structured around the whole person approach.

Heal Your Pain program is a pathway that explores the role of emotional health in the pain experience. The first step is a face to face 90-minute interview with a clinical psychologist to explore the mind body link. After this, there is an option to attend a face-to-face group program for 2 hours per week for 4 consecutive weeks. It is based on a treatment called Emotional Awareness and Expression Therapy. 

Support with weaning medications is a pathway providing opportunities to patients to learn more about medications used for chronic pain and review a medication weaning plan or develop one. The group program run by specialist pain nurses comprises a 2-hour face to face program followed by phone support.

When individual support is indicated, HIPS offers an individual multidisciplinary appointment pathway based on the whole person approach. In the appointment, the HIPS team will help you assess contributors to your ongoing pain and develop your recovery plan. This will enable you to make an informed decision about how HIPS may further support you in your recovery.

Pain related procedures can be offered in some circumstances, particularly for cancer related pain and end-of-life or palliative care.

For both group and individual pathways, HIPS offers virtual care (telehealth) appointments. Please phone our team on (02) 4922 3435 to discuss how HIPS can best support you.

Your nephrologist asked you to join our Kidney Treatment Options Pathway based on review of your kidney function.  They are looking at the chance your kidney function will drop to a level where you need to think about medical treatment.

Early referral to the Kidney Treatment Options Pathway is shown to support people in making informed treatment choices.

Sometimes people are referred while they are feeling well which can feel confusing. We do this to allow enough time for you to attend education, speak to friends and family and to come to a decision about your future health.

The kidney treatment options education pathway has lots of communication between you and your treating medical team.

The Kidney Treatment Options coordinators are registered nurses in the Nephrology Unit of John Hunter Hospital. We work with you to inform you about treatment options. The Kidney Treatment Options coordinators work between your nephrologist and your health care team.

A long period of time can pass between being referred for education and having to make any definite plans for treatment. The pathway is there to ensure that you are kept informed about your treatment options as time goes on.

The referral from your kidney specialist to the Kidney Treatment Options Pathway is a starting point for you to think about the different treatment options.  The main question is which treatment option would work best for you and your family.  Being actively involved in decisions about your treatment is welcomed by your kidney team.

The three treatment options for kidney failure are:

• Kidney dialysis (haemodialysis and peritoneal dialysis)
• Kidney transplantation
• Supportive care (without dialysis).

Your kidney team, along with your GP, will give you the information and support you need to help you make the best decision for your situation.  It is important to remember that your decisions can change over time and changes in your health can affect you. 

Dialysis is a medical treatment used for kidney failure. It removes waste products and extra fluid from the blood.

There are 2 main types of dialysis: peritoneal dialysis (PD), done at home, and haemodialysis (HD), which can be done at home or in a renal unit.

Dialysis options include home dialysis (either peritoneal dialysis or home haemodialysis) and centre-based haemodialysis, which takes place in a satellite or hospital dialysis unit.

Haemodialysis

In haemodialysis, your blood is pumped through special tubing to a haemodialysis machine, which works like an artificial kidney. It filters waste products and extra fluid from your blood before returning it to your body. A special filter called a 'dialyser' is used during this process.

Peritoneal dialysis

Peritoneal dialysis is a treatment where dialysis fluid is moved in and out of the peritoneal cavity in your abdomen to clean your blood. This is usually done 3 or 4 times a day. It can also be done at night using a special machine called a cycler. The dialysis takes place inside the body, using the natural lining of the abdomen as the membrane. PD is usually done at home, either by the patient or a carer.

Is one better than the other?

PD and HD work in similar ways by filtering blood through a thin membrane called the dialysis membrane. Excess waste and fluid pass into a liquid called dialysis fluid, which is then removed from the body. Both methods effectively remove waste and fluid from the blood.

Your choice of treatment may depend on other health conditions. Unless a medical condition makes one unsuitable, both PD and HD are effective long-term treatments for kidney failure.

Your Kidney Treatment Options coordinator will talk with you frequently to help you manage your kidney disease as best as you can. You begin our education pathway after being referred by your nephrologist to one of the coordinators.

The coordinators will be your ‘case manager’ and are there to provide the following assistance:

• provide education on treatment options
• ensure you are referred to members of the health care team when required
• act as a point of contact for you and assist with any questions you may have
• contact you on a regular basis to check how you are going
• arrange for screening for Hepatitis B and vaccination if needed.

We have close links with the Transplant Team at John Hunter Hospital and the Renal Supportive Care Team. We can help guide appropriate contact with these teams.

There are a number of people that will be involved in your care while you are on the Renal Options Pathway.

Nephrologist

Your Nephrologist or kidney doctor is your coordinating doctor.  They will liaise with your GP, surgeons, radiology doctors and other healthcare teams at the John Hunter Hospital.  Your nephrologist is the main source of referrals to different members of your treating team.

Occupational Therapy

If you want to do home dialysis you may be asked to see the occupational therapist. The occupational therapist will assess how you are able to attend daily tasks. They may help make a plan to help you with dialysis training.

Areas that we may talk about are:

• your life roles and values
• physical skills such as walking, lifting and balance
• hearing
• eyesight
• your ability to read & follow instructions
• pain
• memory
• your ability to grasp and control objects with your hands.

Social work

The social work department has social workers who are responsible for speaking with people as they come through the education pathway. Issues that may arise are looking at treatment options from a social perspective, effects on family and work life, quality of life and lifestyle changes due to renal disease, family structures and work history, transport, accommodation and financial pressures.

Social workers offer counselling and support to patients and their partners, carers, family and friends. They can act as patient advocates, particularly with your treating medical team, Government agencies and community organisations.

Social work input can be arranged when required by contacting your Kidney Treatment Options Coordinator and asking for a referral to a kidney social worker.

Dietitian

There are kidney dietitians based at John Hunter Hospital and at Wansey Dialysis Unit. They are responsible for providing nutritional assessment, education and ongoing support. This is done by providing outpatient clinics, education, assessments and other consultations.

The dietitian will assess your current diet, any symptoms you are experiencing and find out how well-nourished you are. You might need to make changes to your food habits depending on the level of your kidney failure, symptoms and current intake.

The dietitian will speak to your Nephrologist when necessary to ensure that you are eating well. Dietary changes can often help maintain kidney function or manage symptoms; the dietitian will work with you to ensure that you get the most benefit from any changes to what you are eating.

You will need regular reviews and changes might happen depending on your blood tests and kidney function.

Home therapies nurses

If you are thinking of doing a home therapy such as peritoneal dialysis or home haemodialysis you will attend a clinic appointment with one of the nurses from the Home Therapies Unit.

This appointment is designed to introduce you to the home therapies team, for you to receive information and be able to ask questions specific to home dialysis therapies. At this appointment the nurse will attend some assessments which help to plan and personalise your dialysis training.

Kidney supportive care

The kidney supportive care team is part of the Renal Unit of John Hunter Hospital.

We provide a service alongside your usual care by your nephrologist and GP. We aim to help improve your quality of life and reduce your symptom burden.

You can access this service if you are:

• on dialysis but are having symptoms
• choosing not to have dialysis
• thinking of stopping your dialysis treatment.

The team consists of:

• palliative care specialist doctor
• clinical nurse consultant
• social worker
• kidney dietitian.

You can access the service after speaking to your GP, nephrologist or Kidney Treatment Options Coordinator.

You will need a GP referral to the kidney supportive care doctor.

Surgeons

Surgeons working with the kidney team can meet you to discuss your choices for dialysis access surgery.  This referral to see a surgeon is made by your nephrologist.

When you are referred onto the pathway by your nephrologist, the referral will include an appointment with a renal dietitian.  This can be done through the public health system at John Hunter Hospital or via virtual care (telehealth).  Private clinics are also available through Hunter Kidney Clinic at Gateshead.

The next step is the Kidney Treatment Options Education seminar.  If you are already on dialysis, it is important that you still attend this session.

The seminar is a great chance for you and your family or friends to gain more information, ask questions and meet other people in a similar situation.  The education seminar is run second monthly at a local club, Club Charlestown.

We have speakers from the renal unit, the renal pharmacist, home training nurses, dietitian and social worker.  It is good chance to meet members of your renal team and others who are facing similar decisions about their treatment options.

After attending the seminar, you and your family or friends will be invited back for a planning clinic at the Wansey Centre, Charlestown.

You meet a Kidney Treatment Options Coordinator to talk about your plans and make referrals to other members of the health care team if required. You will also speak with our Renal Social Worker.

The Planning Clinic allows time to discuss treatment options your Kidney Doctor may have talked with you about in clinic appointments.

After discussing your treatment options, you can meet with members of our Home Training Team.  This clinic will give you more time to speak about home dialysis to help your decisions about treatment.

The Nephrology Unit based in Newcastle has 9 nephrologists who can refer their patients to the Kidney Treatment Options Pathway. There are about 250 people on the Kidney Treatment Options Pathway with different stages of kidney function.

We cover a large geographical area. We have patients from the border of the Central Coast, up to as far as Aberdeen and Scone in the Upper Hunter and the north as far as Buladelah.

Other areas such as Tamworth, Armidale, and Taree have renal options coordinators working in their Renal Units and provide education pathways similar to our Kidney Treatment Options Pathway in Newcastle. Contact details for the renal options coordinators in these areas are below:

Your nephrologist has referred you to join our Kidney Transplantation Pathway.

The transplant team communicates between you, and your treating medical team.

The transplant recipient coordinators are located in the Nephrology or Transplant Unit of John Hunter Hospital. We work with you to inform you about transplant options.

Your transplant recipient coordinator will talk to you often to keep you informed whilst you are on the pathway to kidney transplant and post-transplant.

Kidney transplantation is a procedure that places one healthy kidney from another person into your body to take over the work of your 2 failed kidneys.  It is inserted into your lower abdomen and connected to an artery and vein in your pelvis. Your blood flows through the new kidney, which makes urine and removes harmful waste products, just like your own kidneys did when they were healthy. Your own kidneys are usually left in place.

You will initially require an assessment to determine whether your body will accept an available kidney. This may require several visits over 4 to 6 months. You must be healthy enough for surgery.

If a family member or friend wants to donate a kidney, they'll need to be evaluated separately for compatibility, general health and counselling. Matching the kidney to your immune system is less important for living transplants.

If you don't have a living donor, you will be registered with the national waiting list to receive a kidney from a deceased donor. The average wait in Australia is three years, but it varies considerably.

If you have a living donor, the operation is scheduled in advance at a time that suits you both.

If you're on a waiting list for a deceased donor kidney, as soon as a kidney becomes available you must go to the hospital quickly. You will have to undergo some tests to ensure the transplant can go ahead. The operation usually takes 3 to 4 hours. Often the new kidney will start making urine as soon as your blood starts flowing through it, but you may need dialysis if this is delayed.

To prevent your immune system from seeing your new kidney as foreign and rejecting it, you need to take drugs that suppress your immune response. Be sure that you understand the instructions for taking your medicines before you leave the hospital.

You will have regular appointments with the transplant team once you are discharged from hospital. It is very important to attend.

Any person considering kidney transplant must attend the education seminar.

The seminar is a great chance for you and your family or friends to gain more information, ask questions and meet other people in a similar situation.

It is good opportunity to meet the members of your transplant team, face to face.

Seminars are held at:

John Hunter Hospital – Transplant Education Seminar is offered 4 times per year, held at John Hunter Hospital.

Tamworth - Transplant Education Seminar is offered 4 times per year, held at Tamworth Rural Referral Hospital.

Invitation dates to attend the seminar will be provided to you by your transplant recipient coordinator.

This clinic will give you more time to explore if kidney transplantation is the right option for you.

Clinics are held at:

John Hunter Hospital -Transplant assessment clinic is on a Tuesday morning, in the south block of Royal Newcastle Centre on site at the John Hunter Hospital.

Tamworth- Transplant assessment clinic is on a Wednesday, 4 times per year held at Tamworth Outpatients Clinic, Tamworth Rural Referral Hospital.

Invitation dates to attend clinics will be provided to you by your transplant recipient coordinator.

Transplant seminar dates 2024

Transplantation - Patient Education Seminar 2024 Calendar

On behalf of the Newcastle Transplant Unit please see below dates for the Transplantation Patient Education Seminars to be held on:

Tamworth dates

Wednesday, 27 November - Tamworth TX Seminar

John Hunter dates

Thursday, 5 September – John Hunter Hospital Tx and LD Seminar

Thursday, 5 December- John Hunter Hospital Tx and LD Seminar

Your transplant coordinator will talk with you to help you manage your kidney disease as best as you can. You begin our education pathway after being referred by your nephrologist to one of the coordinators.

A donated kidney may come from someone who died and donated a healthy kidney, called a deceased donor. Donated kidneys also can come from a living donor. This person may be a blood relative (like a brother or sister) or non-blood relative (like a husband or wife). They can also come from a friend or even a stranger.

Rejection is one of the most important complications that may occur after receiving a transplant. Since you were not born with your transplanted kidney, your body will think the new kidney is “foreign” and will try to protect you by “attacking” it.

Increased risk of infection due to the immunosuppressant medications.

During the early stages after a transplant, while you're on higher doses of immunosuppressant medicine, you should avoid eating foods that carry a high risk of food poisoning, including: unpasteurised cheese, milk or yoghurt. Foods containing raw eggs (such as mayonnaise) undercooked or raw meats, fish and shellfish.

The new kidney is placed in the lower abdomen and groin area and not in the natural place for your kidneys. Removing the old kidneys can be risky and is not required unless there is uncontrolled infection, high blood pressure, or the kidneys are markedly enlarged such as with polycystic kidney disease (PKD).

Once you're home from the hospital, the most important part of your recovery begins – the follow-up. To ensure your transplant is successful, you'll have regular check-ups, especially during the first year. Initially, you may need blood tests several times a week, then once a week, and gradually less often. Over time, if you're doing well, the frequency of check-ups will decrease, but they'll still be needed to make sure your kidney is functioning properly and that you're on the right dose of anti-rejection medication.

How soon you can return to work depends on your recovery, the kind of work you do, and you’re other medical conditions. Many people can return to work eight weeks or more after their transplant, but sometimes it can be sooner or later. Your transplant team will help you decide when you can go back to work.

In general, transplant recipients should eat a heart-healthy diet (low fat, low salt) and drink plenty of fluids. If you have diabetes or other health problems, you may still have some dietary restrictions. A dietitian can help you plan meals that are right for you.

You should learn as much as you can by reading and talking to your healthcare team, as well as patients who already have kidney transplants.

If you decide not to have dialysis you will still receive support and medical treatment from your kidney team. Your GP will also be aware of the decision.

Everyone involved in your care will support your decision, as long as they are happy that it is a fully informed choice.  Your kidney team will counsel and support you and your carers through these difficult decisions.

Your doctor (endocrinologist) is a specialist in caring for diabetes and endocrine conditions in children and teenagers. A doctor will see you most days during your hospital stay to adjust your insulin doses and other medications and manage your medical treatment. They will review your progress every three months in the clinic. Our medical team also includes a paediatric registrar and resident doctor who assist the endocrinologists.

Your diabetes educator (clinical nurse consultant) will teach you how to measure blood glucose levels, give insulin, manage high or low blood glucose levels, and generally adapt the diabetes treatment to your life. For children with endocrine conditions, they will instruct you how to take your injections and oral medications.

Your dietitian will assess your nutrient intake and will teach you how to match your insulin dose to your food intake. Management of exercise, and eating habits are discussed and a healthy lifestyle is encouraged. For children with coeliac disease or requiring a special diet they will also help you with this.

Your social worker will provide emotional and practical support in hospital around your child and family's adjustment to diagnosis and the hospital environment. Parenting advice and therapeutic support is also offered to children and young people and their families after discharge as needed.

We work closely with your family doctor who will continue to provide your routine health care such as immunisations, scripts for medications including insulin, and review of routine pathology tests that were ordered at the hospital. Your family doctor can help by developing an Enhanced Care Plan to help track your progress.

Use SeNT eReferral to send referrals to Hunter New England LHD.  If your GP management system does not support SeNT, you may a FAX referral to (02) 4922 3904.

Children and young people who become seriously unwell with diabetes or an endocrine disorder should be brought to the John Hunter Accident and Emergency Department for initial assessment.

You can phone the paediatric endocrine service on (02) 4985 5634 or (02) 4985 5274.

If your problem is urgent, please call John Hunter Hospital switch on (02) 4921 3000 and ask to speak with the paediatric endocrinologist on call.

Management of coeliac disease and type 1 diabetes requires lifelong avoidance of gluten and attention to the carbohydrate content of foods.

Forever Yum (PDF 20.71MB) is a book of over 60 recipes for everyday and the menu is designed for a gluten free diabetic diet.