Understanding Tube Feeding Pathways for EDS and Hypermobility in Australia

A guide for those navigating malnutrition, gastrointestinal symptoms, and seeking support through the Australian healthcare system.

Shortcuts:

What private practice dietitians can and can't assist with

What is Enteral Nutrition and tube feeding?

Tube feeding pathways in Australia - Public vs Private

Tube feeding in HSD/EDS - approaches and considerations

A note on healthcare trauma

Living with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) can come with complex gastrointestinal challenges. For some, these symptoms in combination with inadequate preventative care can lead to difficulties which may result in malnutrition. In such cases, the idea of tube feeding might come up, whether through personal research or during a consult with a health professional.

Tube feeding can be an overwhelming step to consider. Many people aren't sure where to begin, who to talk to, or what kind of support is available - especially within the Australian healthcare system. These conversations come up regularly in our consults at Savvy Dietetics, so we’ve put together a guide based on common questions we hear.

What We Can and Can’t Do as Private Practice Dietitians at Savvy Dietetics

Note: Private practice dietitians have widely varying scopes of practice in the tube feeding space, depending on past clinical experience, professional development and overall confidence. What we discuss below is only a reflection of our scope of practice currently at Savvy Dietetics.

As private practice dietitians, we play an important role in recognising nutritional concerns, but there are limitations to what support we can provide with tube feeding. At Savvy Dietetics, we are not part of a hospital-based medical team, so our involvement in tube feeding decisions and management is quite limited.

We can help with:

• Assessing nutritional status and identifying when broader care team intervention (such as but not limited to tube feeding) might be necessary

• Writing to your GP or Gastroenterologist to raise concerns and discuss your care, and/or participating in Medicare Case Conferences organised by a medical professional

• Providing a letter to take to your hospital emergency department if we feel that your malnutrition and health status may warrant a more urgent need for tube feeding due to medical instability or other red flags

• Preparing NDIS reports advocating for Home Enteral Nutrition (HEN) funding - depending on your current plan and subject to NDIS legislative changes

• Offering basic advocacy support if you're hospitalised or undergoing feeding tube placement (for existing clients only and depending on clinician availability). This usually centres around HSD/EDS specific considerations within our scope of practice to suggest.

• Creating a transition plan if/when you're ready to move off tube feeding and return to an oral diet

We currently can't help with:

• Emergency consultations for acute malnutrition symptoms - please seek immediate medical care

• On demand phone consultations for hospital advocacy - if you are an existing client, we will do our best to help you advocate, depending on our capacity.

• Making definitive calls on whether you need tube feeding - this must come from a medical professional or Gastroenterologist

• Managing tube feeding, such as selecting formulas, ordering supplies, setting feeding protocols or troubleshooting tolerance issues

• Case management and service coordination

What is tube feeding and enteral nutrition?

Enteral nutrition refers to the delivery of specialised nutrition directly into the gastrointestinal (GI) tract, when someone is unable to meet their nutritional needs through eating or drinking alone.

Enteral nutrition is used when the gut is working but oral intake is inadequate. In the HSD/EDS space this is usually due to a combination of factors such as swallowing difficulties, severe nausea, fatigue, gastroparesis, MALS/SMAS compressions, and/or limited diet diet due to MCAS or sensory challenges.

Types of Enteral Nutrition can include:

• Oral Nutrition Supplements 'ONS' - These are fortified, (often) nutritionally complete liquids. They come in a variety of consistencies (e.g. thin fluids, puddings, thickened liquids) and are often the first step in enteral support. They are often quite accessible, and many can be found in supermarkets, chemists or online stores such as here (not sponsored). Sometimes ONS can be funded via NDIS, or discounted via a script from a public hospital dietitian.

• Nasal feeding tubes (generally short term):

  • Nasogastric 'NG' Tube - a tube placed via the nose, which delivers food into the stomach. The 'G' in NG stands for gastric, relating to the stomach. Some people tolerate NG feeding well, however those with stomach motility issues or vascular compressions (MALS/SMAS) may require NJ feeding.

  • Nasojejunal 'NJ' Tube - a tube placed via the nose, delivering food into an early section of the small intestine (jejunum).

• Surgical feeding tubes - (generally longer term, but reversible)

  • G-tubes, including PEGs - a tube which is placed through an opening made surgically into the stomach.

  • J-tubes, including PEJs -  a tube which is placed through an opening made surgically into the small intestine.

There are also several variations on the above.

Other lingo:

• Home Enteral Nutrition - Refers to managing tube feeding at home with training, support, and supplies.

• Tube feeding formula - Hospital-grade nutrition formula that provides complete macronutrients and micronutrients. The specific formula used may depend on your hospital's tender contract, but alternatives can be explored if issues arise.

• Consumables - Items needed for feeding such as tubing, syringes, bags, and connectors.

• Blended tube feeding - Blended real food used in place of formula. Usually only an option for those with a G- or J-tube.

Pathways for seeking tube feeding in Australia

Note: The following information reflects what we, as private practice dietitians, currently understand. It is not a substitute for individualised medical advice. Please consult your healthcare team for guidance tailored to your situation and the current health care system pathways.

In Australia, there are generally two main pathways for accessing tube feeding support: Public Health or Private Health.

The Role of Your GP

Your General Practitioner (GP) should usually be your first point of contact for discussing malnutrition, tube feeding or related concerns. Your GP can provide referrals and help coordinate care. Some GPs may be open to hosting Medicare-billed case conferencing with other members of your team - which we have found incredibly beneficial when supporting complex clients.

However, we acknowledge that there can be several barriers to accessing supportive GPs, including:

• Limited access to extended GP consultations

• GP unfamiliarity with gastrointestinal impacts of EDS/HSD

• Financial or logistical challenges

In an emergency or if your health is rapidly deteriorating, seek immediate care through your nearest Emergency Department (ED).

Tube Feeding Through the Public Health System

Option 1: Presenting to your local Public Hospital Emergency Department

If you're experiencing an acute episode of medical instability related to malnutrition, this is often the most direct route to urgent assessment.

As private practice dietitians, with notice, we can provide a letter outlining your nutritional status and history to assist with triage and support clinical decision-making. However, please note:

• Admission to a medical ward for re-nutritioning typically requires clear signs of medical instability and/or risk of refeeding syndrome.

• In Queensland, the QuEDS Guide to Admission and Inpatient Treatment (Page 2) is often used as a reference, even though it was originally developed for Eating Disorder patients. In the absence of other clear public protocols, it is often applied more broadly at clinician discretion.

If you're admitted to the ward, the care team will likely stabilise your nutritional status in-hospital and monitor for refeeding syndrome. They may want to try and stabilise your nutrition orally (e.g. using Oral Nutrition Supplements), or conduct further testing before trialling tube feeding. Once medically stable, they will determine if you're eligible for discharge with a Home Enteral Nutrition (HEN) program (e.g. if you get to continue tube feeding at home). If you are not eligible for a HEN program, the tube will likely be removed and you will return to an oral diet with support from your existing health team or outpatient public health services.

Option 2: Referral to a Public Health Outpatient Gastroenterology Clinic

If your condition is not acutely urgent but your nutritional status is worsening, you may pursue a referral to an outpatient public hospital clinic to see a Gastroenterologist, via your GP.

Important things to keep in mind:

• Wait times in the public system can be long, so to ensure you are triaged appropriately ensure your GP includes comprehensive details in your referral, especially if urgency is a concern

• You usually can’t choose your treating specialist

• Some clinics operate on a Dietitian-first model, where you'll see a Dietitian before being escalated to a Gastroenterologist

• This route often incurs minimal to no costs (excluding medications, Oral Nutrition Supplements, and similar)

  
  

During your outpatient Gastroenterology appointment, the specialist will:

• Assess your symptoms and nutritional status

• Often order investigations and trial conservative measures thoroughly (e.g., medications, Oral Nutrition Supplements) before discussing tube feeding

A letter from your Dietitian may help inform the consultation and streamline the process.

Option 3: Referral to a Public Health Outpatient Dietetic Service

While this is not a direct avenue for assessment of tube feeding, if you have not yet seen a Dietitian it can sometimes be worth seeing a dietitian via a public health outpatient clinic. You may be able to self-refer for this service via the hospital's webite, although sometimes you may require a referral from your GP.

The Dietitian will be able to provide a thorough assessment, relevant education, and may be able to escalate your case if indicated.

Tube Feeding Through the Private Heath System

Seeing a private practice Gastroenterologist

Seeing a Gastroenterologist through the private system follows a similar process to public care but with a few key differences.

To see a private Gastroenterologist, you will need to see your GP to organise a referral. This referral should allows access to Medicare rebates for consults with the Gastroenterologist within a specific time period.

Before asking your GP to refer you to a private Gastroenterologist:

• Research EDS/HSD-aware Gastroenterologists (ask in support groups or online communities)

• Call the Gastroenterologist's clinic to check:

  • If they’re accepting new patients - they may decline your GP's referral based on their capacity or individual scope

  • Current wait times

  • Fee structures and expected gap payments

Even with a Medicare rebate, private consults with specialists usually involve a gap fee. These are not typically covered by Private Health Insurance, but they do count toward your Medicare Safety Net, which can significantly reduce your costs for the remainder of the calendar year once the threshold is reached. If you are undergoing frequent specialist or allied health care, monitor your cumulative health costs via the Medicare MyGov portal so you can benefit from the Medicare Safety Net sooner in the calendar year.

You may also have additional costs for:

• Imaging and investigations (e.g. gastric emptying studies, x-rays)

• Procedures (e.g. endoscopy, colonoscopy, feeding tube placement)

• Hospital admission, anaesthesia, or post-op care

If you have Private Health Insurance, it may cover part of these procedural and hospital-related costs - but not the gap fees for consultations. Also note that not all private Gastroenterologists have admitting rights or access to facilities for feeding tube placement. In those cases, they may refer you to a colleague or a hospital within the private system.

As with the public system, most private Gastroenterologists will typically explore conservative treatment options first and only proceed to tube feeding if other approaches are unsuccessful.

Our thoughts on the role of tube feeding in Hypermobility

Enteral nutrition can be life saving, but it is not a decision that is taken lightly given the cost, extensive planning, sometimes unreliable pathways, ongoing healthcare team involvement and collaboration, and risks involved.

Where possible, we try to support clients to prevent reaching a stage of malnutrition and medical instability where they require tube feeding. Areas that we may explore with clients, or advocate to your healthcare team for may include:

• Medical management of POTS and MCAS - these often influence GI motility and food tolerance

• Fecal loading - this is a common reason why high fibre formulas are not tolerated well. Fecal loading needs to be well managed for any food to be tolerated in a reasonable portion.

• Hydration - oral or intravenous

• Other strategies, many of which are within dietetic scope to assist with or advocate for

Due to the unique impacts of Hypermobility & EDS on the gastrointestinal tract, people with HSD/EDS who have a tube placed will need to be evaluated for special considerations.

Considerations can include:

• Tube position - many of our clients who experience significant malnutrition have vascular compressions like MALS and SMAS, which affect the stomach and early part of the small intestine respectively. For these clients, NG or PEG tubes that deliver food into the stomach are often not tolerated, and rather tubes that deliver food into the small intestine are preferred

• Feeding rate - there are several different ways that formula can be delivered through a tube, which vary in speed and mechanisms.

• Sensory considerations - some people find it hard to tolerate the sensation of a tube, particularly for those placed nasally. For these clients, where tube feeding may be needed for a longer duration, earlier placement of a surgical feeding tube directly into the abdominal wall may be considered sooner in some cases.

• MCAS food sensitivities - needs to be accounted for when selecting a tube feeding formula. Note that special needs formuals such as dairy free, semi-elemental or elemental usually have a higher price

• Tube feeding outside of an inpatient hospital setting, 'Home Enteral Nutrition', may be costly and require the purchase of tube feeding formulas and other 'consumables'. While discounted prescriptions may be offered via some practicitions, there will often be a gap fee that may only be covered by NDIS or Private Health Insurnace in limited cases.

• Additional flushes with salt water may be provided to ensure sodium needs are met for POTS & OH

A note on healthcare trauma in Hypermobility

We also would like to acknowledge the challenges and trauma that many Hypermobile folk in Australia have faced trying to seek support for malnutrition related to gastrointestinal concerns.

We understand that due to past experiences, many people with HSD or EDS (especially those who are also neurodivergent or who have vascular compressions) do not feel safe presenting at their local Emergency Department (ED) for symptoms related to malnutrition. We understand that common experiences can include hesitancy to investigate or recognise vascular compression syndromes, delaying malnutrition care for people who are not clinically underweight (note: you can be severely malnourished while living in body which is not clinically underweight), and incorrect escalation to eating disorder care.

As private practice dietitians we are in a tricky position with limited ability to help, so please understand that for medico-legal reasons we do have to recommend presenting to ED if symptoms you describe during a consult are significant and worrying enough to warrant more urgent medical care. We hope that as awareness around Ehlers-Danlos Syndromes are raised and as clinician education initiatives such as The Ehlers Danlos Society ECHO courses, Connected Health Alliance Clinician Roundtable and similar become more widespread, that people with EDS and HSD will have better healthcare experiences and outcomes.

To wrap up...

Tube feeding can be an incredibly valuable medical intervention for Hypermobile people who are experiencing significant malnutrition and have exhausted other oral nutrition options. However, there are not currently reliable pathways in Australia unless you meet strict criteria including significant medical instability.

If you are currently malnourished, or at risk of malnutrition. It may be worthwhile seeking dietetic care and discussing next steps with your medical team sooner, to try and understand what factors are at play and to see if further deterioration can be avoided.

Savvy

Savvy Dietetics is an Australian Nutrition & Dietetics clinic passionate about helping people with invisible illness and complex gastrointestinal concerns, including Hypermobillity & Co. Consult information and bookings can be found here, and if you have any specific questions, feel free to email us at admin@savvydietetics.com.au.