FAQ

Jacquelyn has been involved in the community since HSD and hEDS were called 'Joint Hypermobility Syndrome'. She was involved since 2007 with the Hypermobility Syndrome Association in the UK and began her Masters Thesis on JHS and Clinical Pilates in 2011. She then got busy looking after  patients and focused on that and moved to New Zealand where she recently took on the role of Clinical Lead with the Clinical Advisory Panel for EDS NZ. She is also involved in speaking opportunities with Ehlers-Danlos Society on an international level and has monthly meetings with the 'best of the best' in the EDS research/clinicians world. 

Her passion is evident when you meet her and seeing the need for specific care on a day to day basis (while waiting for specialist appointments), she started this clinic.

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that affect the body’s ability to produce collagen. Collagen is an important component in the body’s skin, bones, joints, and blood vessels. EDS can cause hypermobile joints, fragile skin, abnormal scarring, easy bruising, hernias, and chronic pain.

Hypermobile Spectrum Disorder (HSD) is a condition closely related to Ehlers-Danlos Syndrome (EDS). While the symptoms of HSD may be similar to those of EDS, there is no definitive diagnosis for HSD. It is thought to be a milder form of EDS that does not meet the criteria for an official diagnosis of EDS, however it can be just as debilitating.

EDS is considered a 'rare disorder' as it is cited as occurring 1:5000.  There is often debate as to the prevalence and if you talk with clinicians who are aware of HSD, hEDS and EDS, they will probably tell you it's higher! The rarer types of EDS would still however be considered rare.

This wonderfully written excerpt sums it up. Doctor Hakim and Doctor Francomano lead the clinicians meetings that Jacquelyn attends monthly (online with the UK/USA).

“In both community care and across a broad range of hospital specialties, many healthcare professionals (nurses, midwives, physical and other therapists, psychologists, and doctors) will likely attend to people with Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD). The belief that EDS is rare or ultra-rare is true for several forms of the syndrome, but increasingly the hypermobile type of EDS (hEDS) is thought more common, and HSD much more common….Yet often the journey to diagnosis and treatment is challenging for patients, who may receive no diagnosis or misdiagnoses. In addition, misconceptions that the issues are solely mental health concerns are commonly reported. Too often there is more than a decade delay in diagnosis, and the negative impact on quality of life from living with under-managed disease is significant.…

With substantial growth in knowledge in the field, keeping up to date with advances in epidemiology, pathophysiology, and management of this heterogeneous group of conditions is challenging. No individual healthcare professional can truly manage all aspects of these conditions at an expert level. Care typically requires a holistic and multi-disciplinary approach. Yet such care, ideally embedded in the community, supported by subspecialty medical, therapies, and social care is lacking for EDS and HSD internationally. Currently, there are small numbers of expert clinics, centers, and networks striving to support patients and colleagues. Access to care is profoundly limited, yet management of many of the common concerns is well within the ability of most generalists with specialist support when needed.

Hakim AJ, Tinkle BT, Francomano CA. Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated co-morbidities: Reports from EDS ECHO. Am J Med Genet C Semin Med Genet. 2021 Dec;187(4):413-415. https://doi.org/10.1002/ajmg.c.31954.

Due to its affect on collagen, Ehlers-Danlos Syndrome can also cause a number of co-morbidities related to connective tissue disorders. Common co-morbidities include chronic fatigue, dysautonomia (orthostatic intolerance), headaches/migraines, joint hypermobility syndrome, osteoarthritis, and digestive issues. You may have heard of the "trifecta": EDS; Postural Orthostatic Tachycardia Syndrome (POTS); and Mast Cell Activation Syndrome (MCAS). The combination of these three conditions can have a huge impact on your life.

Jacquelyn specialises in working with people with EDS and HSD and their common co-morbidities to help them manage their pain with minimal lifestyle change. She brings together her knowledge from over 30 years of experience and her individualised approach to create a program that helps you take control of your life and get the most out of it without hiding behind your chronic illness.

Most importantly, she believes you need a team of practitioners who both have the knowledge and have a huge sense of compassion for this specialty area. It takes a lot of time and dedication to keep up with the latest research and support patients with their health. Choose your team wisely.

Yes.

However ...

Jacquelyn believes that it's important to include your GP or specialist in making the diagnosis.  She will assess whether you meet the criteria (2017 Adult or 2023 Paediatric) and to ensure that you get the correct diagnosis, the Criteria 3 must be assessed for alternative connective tissue disorders or autoimmune conditions which can mimic HSD/EDS.

She therefore spends at least the same time as your appointment (80 minutes - usually longer!) going through your medical records to ensure a thorough analysis has been made. This often means she will need the support of your other providers and she will liaise directly with them should there be any concern or questions.

 Jacquelyn is a registered osteopath with extra training in EDS/HSD and can help with diagnosis of EDS/HSD and is diligent at keeping up to date with her research by attending monthly meetings with the EDS society and attending ECHO trainings. 

Yes, Jacquelyn can diagnose under the paediatric criteria if you are under 18. The paediatric criteria allows diagnosis from six years of age. Note that the terminology is different for those under 18, and the words 'EDS' are not used.

Jacquelyn works closely with parents, schools, healthcare providers to ensure that the individual receives comprehensive care. 

As with the adult criteria, it is important to rule out alternative diagnoses and this is part of her assessment and time spent outside the treatment session.

Hypermobility is a term used to describe people with an increased range of movement in their joints. This can be seen as being ‘double jointed’. Hypermobile Spectrum Disorder (HSD) is closely related to EDS but it can be just as debilitating. You can have generalized or peripheral joint hypermobility without the symptoms of EDS and HSD.

The Beighton Score is a simple tool used to measure joint hypermobility. It is not an accurate indicator of whether or not someone has EDS or HSD as these conditions have other criteria that must be met to make a diagnosis. A high Beighton score can mean you are very bendy, but it does not necessarily mean you have EDS or HSD.

Equally, the 2017 Diagnostic Criteria takes into account that we all 'stiffen up' with age and it will be acknowledged if you would have previously scored highly on the Beighton Score. This may be taken into consideration when diagnosing EDS/HSD.

We’re sorry, but we don’t offer phone consultations.

Jacquelyn and her team are fully focused on patients during treatment sessions to ensure their safety and provide our complete attention.

She is actively involved with the Aotearoa Network of Excellence, sharing free information and resources with the New Zealand community, including contributing to the Newly Diagnosed Seminar run by EDS NZ. Alongside this, she dedicates many hours each month to ongoing study, professional meetings, and courses to ensure her knowledge and clinical care remain at the highest standard.

Because of this commitment and to maintain patient safety, she is unable to make phone calls outside of appointments. All discussions and advice are provided within the session, where full attention can be given to each patient.

To maintain this standard of care, all communication is handled in writing. This helps us provide clear, thorough responses while allowing our practitioners to stay fully present with patients in session.

After this time, you'll need to email us at admin@edswellbeing.com as there are fees associated with late cancellations.

No, you do not need a referral from your GP to see Jacquelyn. Jacquelyn will liaise with your GP and any other healthcare providers. This is part of any of the service and included in the initial consultation and follow-up appointments as appropriate.

Jacquelyn takes a comprehensive approach to help her clients manage their complex pain conditions. She understands the importance of providing comprehensive care for her clients and as such the clinic set-up is individualised to meet the needs of each patient.

Although she is a registered osteopath with the Osteopathic Council of New Zealand, she considers herself an EDS/HSD practitioner and takes an holistic approach.

Her love of study, obsession with 'getting it right for the patient' mean that she does a lot of hours outside her clinical work developing support teams, networking and setting up connections for her patients. 

She also has a Clinical Lead role with EDSNZ and does a lot of voluntary work in that space. She is currently setting up a multi-disciplinary team for an EDS Network of Excellence for New Zealand.

Clinical questions are not able to be answered on email.  This is for your safety.

There is however an option for email access to Jacquelyn for one month after the initial appointment. This is included in the Initial Appointment Package.

Most of your questions will be answered via these FAQ. 

If you have any admin questions, please send through to admin@edswellbeing.com.

Yes, Jacquelyn offers online consultations for people who are unable to attend face-to-face appointments.  Many patients wish to access her services from all over New Zealand.

These are encrypted video sessions that can be carried out from the comfort of your own home.

You will be sent a link to use. 

If you'd prefer, telephone options are also available. 

Jacquelyn recommends bringing a family member or friend to the appointment. Having someone by your side can be beneficial as they can take notes and ask any questions you might forget. With conditions like EDS or HSD, each day can be unpredictable. However, bringing a support person ensures that you receive the best treatment tailored to your specific needs on that particular day.

Your initial appointment covers the following:

• the preparation time for Jacquelyn to read through your medical reports
• the preparation time for Jacquelyn to read through your online forms (which will be sent to you prior to your session)
• follow-up comprehensive report to your GP, allied health or any medical provider you choose.
• Email support for one month after the Initial Appointment.
• in-session detailed discussion of your medical history and current symptoms. A discussion will be had as to what is the most important at the time of meeting Jacquelyn as she knows that the effect on your health can change rapidly. You get to choose what you'd like to focus on.
• Lifestyle evaluation
• Goals evaluation and forms in session
• Physical assessment of joint mobility, muscle strength and physical ability
• Hands-on assessment and treatment (if time permits and if appropriate). This option will be discussed in session as Jacquelyn knows it depends on how you're feeling on the day. 
• Jacquelyn has vast experience in the field of EDS/HSD and is aware that adaptability on the day is vital to the patient/practitioner relationship and trust for a patient who has this connective tissue disorder. 

Before we begin working together, it is important for me to have a clear understanding of your unique needs and challenges. That's why all my clients start with an initial assessment.

These include options for payment plans and packages that are tailored for your needs based on geographical location, type of EDS or 'wish list'.

We recognise that accessing healthcare in New Zealand can be challenging, particularly as many services are provided through private clinics like ours that are not subsidised. We understand that the costs associated with managing health can be significant for many patients.

As such, our initial consultation fee is $450. In our commitment to supporting your health journey without adding extra financial burden, we offer a month of complimentary email support following your first appointment. Jacquelyn also dedicates her time to advancing resources and support for those with EDS through her work with EDS NZ.

Please note that there is a $30 surcharge for appointments at Marua Medical Centre in Auckland.

She will often contact patients if some new research is available and pertinent to their care. It's her commitment to the community.

We want to make our services accessible to you. If you require a payment plan, please do not hesitate to discuss this with us. We are here to help and understand the need for flexible payment options.

Perfume: Please don't wear perfume or aftershave to your appointment. This is for the comfort of those patients who are sensitive and have mast cell sensitivities. 

Shoes: We ask you to leave your shoes inside on the shelf as you enter. Keeps our clinic clean. We suggest socks in Winter!

Parking: There are a limited number of carparks within the clinic grounds. If no carparks are available we advise to park on Molesworth Drive. Please don't park directly outside on Pearson Street as this blocks the traffic!

Payment: Payment can be made using debit, credit or cash. EFTPOS is available.

1. If you have Manage My Health, take screenshots and label them. Send them through to admin@edswellbeing.com

2. Scan/take photos and label any paper notes you have and send through through to admin@edswellbeing.com. Do not bring paper copies to your appointment.

3. Contact your GP admin team and ask if they can email you through your medical notes, scans and reports. Note that this takes much longer than the above two options so allow more time before you book your INITIAL APPOINTMENT. Email to admin@edswellbeing.com.

PLEASE NOTE: Jacquelyn needs these medical notes minimum one week prior to your appointment TO ALLOW FOR PREP TIME.

You have the option of a CONNECT or TELEHEALTH session as an introduction. 

Each patient is allowed one of these and must then do the Initial Appointment. This allows for: 

a) safe and comprehensive assessment of your medical history

b) ensures that it's appropriate to investigate for HSD/EDS

c) allows you to meet Jacquelyn to see if it's a good fit!

* Please note: It is not possible to give sufficient service/care for a HSD/EDS patient on a one off basis the way Jacquelyn works. She does a large amount of work outside your sessions which includes letters, research and meetings on your behalf. This therefore means that you need to do the INITIAL APPOINTMENT and the packages before working with her on a casual basis.

After the INITIAL APPOINTMENT, you'll be sent an email with suggestions based on your needs. This is bespoke.

After the duration of the FOLLOW-UP SESSIONS it is expected that you'll then have a multi-disciplinary team set up who have liaised with Jacquelyn and you.

* Please note: It is not possible to give sufficient service/care for a HSD/EDS patient on a one off basis the way Jacquelyn works. She does a large amount of work outside your sessions which includes letters, research and meetings on your behalf. This therefore means that you need to do the INITIAL APPOINTMENT and the FOLLOW-UP SESSIONS before working with her on a casual basis.

After your bespoke programme of 4 x FOLLOW-UP SESSIONS has been completed, you are welcome to do MAINTENANCE SESSIONS. 

These appointments are scheduled for 40 minutes as follow-ups for patients who have finished the FOLLOW-UP SESSIONS.

Whether private or ACC-funded, the treatment cost will be determined in session with a discussion between you and Jacquelyn.

The fees for these sessions encompass administrative tasks before and after, as well as any referral correspondence generated during the session.

FOLL0W-UP SESSIONS

$200

MAINTENANCE SESSIONS

Private: $150
ACC: $100

Before and after your first appointment, please take a little time to set up a calm self-regulation practice that feels safe and supportive for you, as the session can be quite intense and caring for your nervous system will help you get the most from the experience; this is especially important for autistic and AuADHD patients.

Working with patients with  EDS or HSD can present unique challenges due to the variability and complexity of symptoms, as well as the potential for comorbidities.

Managing patients with EDS/HSD requires a multidisciplinary approach involving various healthcare professionals to address both the primary symptoms and associated comorbidities effectively.

One of the challenges in managing EDS/HSD patients is the lack of awareness and understanding among healthcare practitioners regarding the condition's nuances and complexities. This can lead to incorrect advice or treatment approaches that may not be suitable or could even exacerbate the patient's symptoms.

Therefore, education and awareness among healthcare professionals about EDS/HSD are essential to improve patient care and outcomes.

Jacquelyn offers this approach for best practice.

Furthermore, open communication and a collaborative approach between patients and healthcare providers are vital to ensure that patients receive accurate information, understand their condition, and actively participate in their care management. Empowering patients with knowledge about EDS, self-management strategies, and available support resources can also enhance their ability to cope with the challenges associated with the condition.

In summary, while working with EDS/HSD patients can be challenging, especially those with complex comorbidities, a multidisciplinary approach, education, awareness, personalised care plans, and effective communication are essential to optimise patient outcomes and quality of life.

Additionally, ongoing research and advancements in understanding EDS/HSD can further improve the management and care of affected individuals. As Jacquelyn attends monthly international meetings with the leading experts in the field, she is up to date with latest research and can implement that with her patients.

You may choose to have a co-session with any of the following: osteopath, chiropractor, physiotherapist, acupuncturist, massage  therapist or whomever you choose!

The more education, the better treatment you'll get. 

BOOK A CONNECT SESSION.

Jacquelyn strongly recommends attending the next Newly Diagnosed Seminar, provided by EDSNZ. Details of this are at the top of this page.

* Each patient is allowed one CONNECT SESSION and any further care is done via INITIAL APPOINTMENT and then PACKAGES.  After this time, single sessions may be used.

Yes, we can lodge an ACC claim for you. This allows you to have your injury assessed and treated immediately.

You do not need a referral to the GP. There are criteria that need to be met and these will be discussed with your practitioner to make a decision on ACC eligibility

Bring your ACC45 number with you. It's a number that looks something like this.  AB12345

We will also need your date of accident and details. 

We collect personal information from you, including information about your:

• name

• contact information

• location

• Medical records

We collect your personal information in order to:

• treat you and contact you for follow-up

Besides our staff, we share this information with:

• ACC (if an ACC claim) in order to supply agreed medical case notes as agreed when you submit an ACC form through us or another medical provider.

Providing some information is optional. If you choose not to enter your medical history, we’ll be unable to provide treatment.

We keep your information safe by storing it in encrypted files and only allowing registered practitioners of EDS WellBeing to access your medical notes.

We keep your information for seven years (paper notes or archiving digital files) at which point we securely destroy it by archiving or burning paper notes.

You have the right to ask for a copy of any personal information we hold about you, and to ask for it to be corrected if you think it is wrong. 

If you’d like to ask for a copy of your information or to have it corrected, please contact us at:

Jacquelyn Schirmer (Privacy Officer)

admin@edswellbeing.com

09 431 3155

1 Pearson Street, Mangawhai 0505

If you are not satisfied with our response, then you have the right to raise the matter with the Ministry of Health.

EDS WellBeing Safeguarding and Child Protection Policy

Safeguarding Statement

EDS WellBeing is committed to safeguarding children, young people, and vulnerable adults who access our services, whether in person, online, or within educational and community environments. In alignment with the Privacy Act 2020 and the Health Information Privacy Code, information will be handled sensitively and shared appropriately. Consent will be sought where possible; however, information may be shared without consent when necessary to protect safety or where required by legal or ethical obligations.

EDS WellBeing recognises that individuals with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD), and related complex conditions may be particularly vulnerable due to health, developmental, psychosocial, or disability-related factors. Safeguarding practices therefore extend across all aspects of service delivery.

All information shared for safeguarding purposes will be proportionate, relevant, and necessary to support wellbeing and safety.

Purpose

The purpose of this Safeguarding and Child Protection Policy is to establish clear expectations, responsibilities, and procedures for protecting children, young people, and vulnerable individuals engaged with EDS WellBeing services.

This policy aims to:

Affirm EDS WellBeing’s commitment to safety and wellbeing. Provide clear guidance to clinicians, staff, contractors, and collaborators regarding safeguarding responsibilities. Support timely and appropriate responses to concerns regarding abuse, neglect, or harm. Ensure referral pathways to appropriate services and authorities are followed where required.

Scope

This policy applies to:

All EDS WellBeing activities, including clinical consultations, educational programmes, online sessions, group learning environments, and community interactions. All clinicians, employees, contractors, volunteers, educators, and collaborators engaged with EDS WellBeing. All interactions involving children, young people, vulnerable adults, and their whānau or support networks.

Policy Statement

EDS WellBeing is committed to creating environments that support safety, dignity, and trust. We recognise that healthcare and educational providers may be uniquely positioned to identify concerns regarding wellbeing and safety.

Our commitment includes:

Providing psychologically and physically safe service environments. Working collaboratively with whānau, caregivers, and support persons where appropriate. Responding to actual, suspected, or potential abuse or neglect in accordance with this policy.Embedding safeguarding awareness within all service delivery contexts.

Responsibilities

EDS WellBeing accepts organisational responsibility for promoting safeguarding practices across all services. This includes:

Prioritising safety and wellbeing in all interactions. Maintaining clear safeguarding procedures.Ensuring safe recruitment practices for individuals working with children and vulnerable populations. Supporting clinicians and staff to develop confidence and competence in recognising and responding to safeguarding concerns. Providing access to guidance and consultation regarding safeguarding matters.

Definitions

Child / tamariki: Individuals aged 0–14 years. Young person / rangatahi: Individuals aged 15–17 years.Vulnerable adult: Any person aged 18 years or over who may be at increased risk of harm due to disability, illness, cognitive difference, psychosocial factors, or dependency.

Child abuse and neglect: Includes physical, emotional, or sexual harm, ill-treatment, neglect, or deprivation affecting a child or young person. This includes actual, potential, and suspected harm.

Types of abuse include:

Physical abuse — deliberate physical harm or unexplained injury. Sexual abuse — involvement of a child or young person in sexual activity or exposure to sexual material. Emotional abuse — actions or omissions that impair psychological or emotional development. Neglect — failure to provide necessary care, supervision, or attention to developmental or health needs.

Designated Person for Safeguarding

EDS WellBeing will appoint a designated safeguarding lead (DSL) responsible for coordinating safeguarding processes.

The DSL will:

Act as the primary contact for safeguarding concerns.Ensure this policy is accessible and understood.Support training and awareness within the organisation.Promote a culture of safety and accountability.Address barriers to implementation of safeguarding practices.

Confidentiality and Information Sharing

EDS WellBeing respects confidentiality and will manage safeguarding information sensitively. Information will be shared only with relevant services or authorities when necessary to protect safety, in accordance with the Privacy Act 2020 and Oranga Tamariki Act 1989.

Safe Practice Guidelines

Clinicians and staff must:

Treat children and young people with dignity and respect.Maintain professional boundaries at all times.Report safeguarding concerns promptly.Seek parental or guardian consent for treatment interactions where appropriate.Remain mindful of privacy and safety in online environments.

Clinicians and staff must not:

Engage in inappropriate physical, verbal, or digital contact with children or young people.Dismiss or minimise safeguarding concerns. Show favouritism or create dependency relationships. Communicate with children or young people through personal social media channels.

Procedure for Handling Disclosures

If a disclosure occurs:

Listen without judgement and provide reassurance.Avoid leading questions.  Document the disclosure promptly, including relevant details.  Notify the designated safeguarding lead. Contact emergency services if immediate risk is identified.

Allegations Involving Staff

Any allegation concerning staff conduct must be reported to the DSL and organisational leadership immediately. Safeguarding considerations will guide all decisions. Interim measures may include supervision adjustments, role modification, or temporary removal from duties while concerns are reviewed.

Safety Checks

EDS WellBeing will undertake appropriate safety checks for individuals working with children or vulnerable populations, consistent with the Children’s Act 2014. This may include police vetting, identity verification, and reference checks, with periodic review.

Training and Induction

All individuals engaged with EDS WellBeing will receive safeguarding information appropriate to their role during induction. Ongoing learning opportunities will support continued awareness and competence.

Support for Staff

EDS WellBeing recognises that safeguarding situations can be emotionally demanding. Staff are encouraged to seek supervision, peer support, or external support where needed.

Review

This policy will be reviewed annually or when legislative, organisational, or service delivery changes occur to ensure continued relevance and effectiveness.

Jacquelyn Schirmer (Privacy Officer)

admin@mangawhaiosteopathy.co.nz

09 431 3155

1 Pearson Street, Mangawhai 0505

229 Marua Road, Mount Wellington, Auckland 1051

EDS WellBeing Safeguarding and Child Protection PolicyAddendum: Neurodiversity and Online Programme Safeguarding

This addendum supplements the EDS WellBeing Safeguarding and Child Protection Policy and reflects the specific needs of individuals accessing services who are neurodivergent and/or engaging in online consultations, education, or community activities.

Neurodiversity-informed safeguarding

EDS WellBeing recognises that many individuals with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD), and related conditions may also identify as neurodivergent. This may include, but is not limited to, autism, ADHD, learning differences, sensory processing differences, communication differences, and other neurodevelopmental profiles.

Neurodivergent individuals may experience increased vulnerability within healthcare and educational contexts due to:

• communication differences affecting expression of distress or disclosure• heightened sensory sensitivity to clinical or virtual environments• difficulty interpreting social boundaries or expectations• increased risk of masking or compliance behaviours• executive function differences impacting help-seeking or reporting concerns• prior experiences of invalidation or misunderstanding

EDS WellBeing commits to neurodiversity-affirming safeguarding practices that prioritise dignity, autonomy, and understanding.

Neurodiversity safeguarding principles

EDS WellBeing will:

• adopt a strengths-based, neuro-affirming approach• avoid pathologising neurodivergent communication styles• provide flexible communication methods where possible• allow additional processing time during conversations• check understanding rather than assume comprehension• support use of support persons, advocates, or communication aids• recognise that behavioural presentations may reflect unmet needs or distress

Clinicians and staff should remain aware that safeguarding concerns may be expressed indirectly or through behavioural change rather than explicit disclosure.

Communication considerations

When working with neurodivergent individuals, clinicians and staff should:

• use clear, concrete, and predictable communication• avoid figurative language when discussing safety matters• provide written follow-up where appropriate• offer opportunities for disclosure in multiple formats• monitor for signs of overload, shutdown, or distress• respect sensory needs within clinical or virtual environments

Online programme safeguarding

EDS WellBeing delivers services through telehealth consultations, webinars, seminars, group education programmes, and online community interactions. Safeguarding responsibilities extend fully into these environments.

Online safeguarding risks may include:

• breaches of privacy or confidentiality• inappropriate communication between participants• blurred professional boundaries• unmoderated sharing of sensitive personal information• online harassment or exclusion• participation from unsupervised minors• technological barriers affecting access to support

Online safeguarding expectations

Participants engaging in online programmes are expected to:

• respect confidentiality of shared personal experiences• use respectful and supportive communication• avoid recording sessions without explicit permission• refrain from private messaging other participants in ways that may create discomfort or boundary concerns• notify facilitators if they experience concerns about safety or conduct

Facilitator responsibilities

EDS WellBeing facilitators will:

• establish clear expectations at programme commencement• monitor group dynamics and interactions• intervene where communication becomes unsafe or inappropriate• provide guidance on privacy and confidentiality• support inclusive participation• maintain professional boundaries in all digital communications

Safeguarding minors in online settings

Where children or young people participate in online services:

• parental or guardian awareness and consent will be obtained where appropriate• clinicians will remain mindful of supervision requirements• communication will occur through appropriate channels• any safeguarding concern will follow standard reporting procedures

Confidentiality and privacy in online environments

EDS WellBeing will utilise secure platforms where possible. Participants will be advised that:

• privacy cannot be fully guaranteed in home environments• headphones and private spaces are encouraged where feasible• recording or sharing session content without consent is not permitted

Responding to concerns in online environments

If safeguarding concerns arise during online engagement:

• facilitators will respond promptly and sensitively• concerns will be documented• the designated safeguarding lead will be notified• appropriate referral pathways will be followed

Wellbeing considerations in virtual settings

Facilitators will remain attentive to signs of distress that may be visible online, including withdrawal, shutdown, emotional escalation, or significant change in engagement. Participants will be offered opportunities for follow-up support where appropriate.

Review

This addendum will be reviewed alongside the core Safeguarding and Child Protection Policy to ensure ongoing alignment with best practice in neurodiversity-affirming and digital safeguarding.

Jacquelyn Schirmer (Privacy Officer)

admin@mangawhaiosteopathy.co.nz

09 431 3155

1 Pearson Street, Mangawhai 0505

229 Marua Road, Mount Wellington, Auckland 1051

Code of Conduct: EDS WellBeing

Purpose

EDS WellBeing is committed to providing a safe, compassionate, and respectful environment for all individuals accessing services, whether in person, online, or within group education settings.This Code of Conduct outlines expectations that support effective therapeutic relationships and a positive care experience for people living with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD), and related complex conditions.

Our ethos

EDS WellBeing exists to support individuals to move beyond simply managing their condition toward living well with it. Care is delivered through personalised guidance, collaborative planning, and compassionate listening within a multidisciplinary framework.

Our environment aims to be:

• safe and psychologically supportive• respectful of lived experience• inclusive of neurodiversity and disability• conducive to learning, reflection, and therapeutic progress

Mutual respect

All participants in EDS WellBeing services are asked to:

• treat clinicians, staff, and other participants with courtesy and respect

• communicate openly while remaining considerate of others

• respect differences in health experience, identity, culture, and beliefs

• contribute to a calm and supportive therapeutic atmosphere

Unacceptable behaviour

The following behaviours are not permitted within EDS WellBeing services:

• offensive, discriminatory, or abusive language

• verbal aggression, intimidation, or threatening behaviour

• harassment of any kind, including disability-related or health-related stigma

• behaviour that disrupts educational or therapeutic sessions

• invasion of personal boundaries or privacy

• coercive communication or unrealistic demands placed on clinicians

• misuse of educational spaces, online platforms, or community groups

• damage to property or fraudulent access to services

Therapeutic environment expectations

To support effective care, participants are asked to:

• attend sessions prepared and as punctually as possible• communicate changes in health status that may affect care• respect the pacing and structure of consultations• engage collaboratively in goal setting and management planning• maintain confidentiality regarding other participants in group settings

Trauma-informed approach

EDS WellBeing recognises that many individuals accessing care may have experienced complex diagnostic journeys, invalidation, or healthcare trauma.

Clinicians will respond with sensitivity, validation, and compassion. However, behaviour that compromises safety, respect, or therapeutic integrity cannot be accepted.

Group and community settings

Where group education, seminars, or community discussions occur, participants are expected to:

• allow equitable opportunity for others to participate

• avoid interrupting or dominating discussions

• respect confidentiality of shared personal experiences

• maintain supportive and non-judgemental communication

Response to breaches

If behaviour does not align with this Code of Conduct, EDS WellBeing may:

• address concerns directly with the individual

• pause or modify participation in a session

• request withdrawal from a group or educational activity

• decline or discontinue services

• seek additional support where safety concerns arise

Actions will be proportionate and guided by safety and wellbeing.

Commitment from EDS WellBeing

EDS WellBeing commits to:

• providing respectful, person-centred care

• maintaining professional and ethical boundaries

• communicating clearly about services and expectations

• supporting multidisciplinary collaboration

• creating psychologically safe learning and therapeutic environments

Acknowledgement

Engagement with EDS WellBeing services indicates agreement to uphold this Code of Conduct and contribute to a respectful and supportive care environment.