Creating A Care Team

Creating a care team to help you with all the various parts of your condition can be very overwhelming. We’ve created this small guide to help you start building your care team.

Who do you need as part of your team? 

That comes down to you – as every individual with EDS is different, your medical team will be unique to you. It may include specialists such as Rhuematologists, Gastrointerologists, Cardiologists and other such-ologists. It may include osteopaths, physiotherapists, chiropractors or mental health professionals such as counsellors or therapists. 

General Practitioner

Your GP is going to be your first point of contact, the person who is going to handle medications from any specialists you may have, refer you to the right services, and look after you. 

If you don’t have a GP, or you’re not happy with your current GP, here are some ways to look for one.

  • Ask on social media (Loosely speaking, your local hub group, local noticeboard pages etc) for suggestions on GP’s close to your location
  • Talk to family and friends for suggestions 
  • A practitioner doesn’t need prior knowledge of HSD/ EDS etc in order to help you, they just need to be willing to learn, think outside the square and be able to support you in the best way possible. Though prior knowledge can help ofcourse.
  • Email or send a letter to places first to ask if there are people who:
    • has knowledge of hypermobility or is willing to learn
    • knows about HSD/ EDS & other health issues if applicable

Remember that you as a patient have rights, if you don’t feel a GP is the right fit for you, you have the right to see a different GP. Your first appointment can be used as an interview appointment, to see if the GP will be the right person to handle your medical needs.

Please note some GP Clinics will set appointments with the next available doctor, rather than with the same doctor each time – you have the right to request to only be seen by one GP. Discuss this with your GP and have it added to your notes so reception staff can see this – they may ask you when you book an appointment if it needs to be your gp or if it’s something that can be handled by the next available gp.

You can also request double appointments, although you may be charged for both appointment slots. If you are unable to find a GP locally for whatever reason, there are virtual health consultants that you can access.

Specialists

Referrals for people with suspected connective tissue disorders are often declined from the public health system

Connective tissue disorders are not publicly funded meaning public health specialists can decline to see you. There are also very long wait lists and not enough staff to keep up with the number of referrals. This is why the majority of people go to private specialists instead. 

Before seeing a specialist (public or private)

  • It can help to email information prior to your appointment, any information that you think may be helpful. Some suggestions:
    • Symptoms (include anything and everything.. anything unexplained or unusual, also look on google if you’re unsure about any symptoms).
    • Lists of current diagnosis
    • Health history
    • Family health history if known
    • Medication list, pain meds & natural supplements – include dosage, what they’re for and how often.
    • Surgeries & procedures
    • Specialists referrals & seen 
  • Note down any questions you may have
  • Talk to family and friends.. they may have questions you don’t think of or be able to contribute to the above information in some way.

It can also help to have copies of any imaging (x-rays, MRI’s, CT’s etc) if seeing a private specialist

During the appointments
  • Ask lots of questions
  • Take a support person with you if that would help.. talk to them about how/ when to contribute. Maybe even come up with a signal if you’re becoming overwhelmed so that person can know to give you more support. It can help to have someone as another set of ears & eyes.
  • You can take a break from appointments if you need a moment to breathe.
  • Take notes, get permission to record the appointment so you can read/ listen to it later to see if there was anything you forgot because of the overwhelming nature of specialist appointments.
After the appointment
  • Take time to process it. these appointments can be overwhelming so be gentle with yourself. 
  • Make notes of any questions that come to mind for when you next see the specialist.
  • Talk to family and friends if that would be helpful.. This may also help you process the content of the appointment.

Physiotherapists

Physiotherapists help people regain movement and function after they have been affected by an injury, disability or health condition. They also give advice on how to prevent injuries.

There are several ways to access physiotherapists

  • Get your GP to refer you to a local physiotherapist
  • Self-refer to a local physiotherapist if you have one that takes self-referrals. This can be done by asking on your local town page, in Loosely Speaking or local hub groups.

Feel free to email or call Physiotherapists ahead of time to discuss EDS, what their level of knowledge of EDS is, or whether they’d be willing to learn how to work with your EDS. If you feel uncomfortable with their answer then find a different physiotherapist – you do not need to put your health at risk just to avoid making them feel bad!

Osteopaths

Osteopathy is a form of manual medicine which recognises the important link between the structure of the body and the way it functions. Osteopaths assist healing by focusing on how the skeleton, joints, muscles, nerves, circulation, connective tissue and internal organs function together as a holistic unit. Many EDSers find Osteopathy to be a great help in getting joints back in place, and keeping them there, and find it more gentle than chiropractic care.

How to find an Osteopath

  • Ask on social media (Loosely speaking, your local hub group, local noticeboard pages etc) for suggestions on GP’s close to your location
  • Talk to family and friends for suggestions 
  • Google “Osteopath” in your area

Feel free to email or call Osteopaths ahead of time to discuss EDS, what their level of knowledge of EDS is, or whether they’d be willing to learn how to work with your EDS. If you feel uncomfortable with their answer then find a different physiotherapist – you do not need to put your health at risk just to avoid making them feel bad!

Chiropractors

A chiropractor is a health professional who treats conditions related to bones, muscles and joints (musculoskeletal problems), usually with manipulation. Many EDSers find Chiropratic care to be a great help in getting joints back in place, and keeping them there. 

Things to be aware of when seeking chiropractic care – 

  • Chiropractic care is often a controversial topic with EDS
  • There are 2 types of chiropractic (the work of chiropractors) in Aotearoa New Zealand –
    • Traditional, alternative chiropractic (also known as vitalistic) is the most common type. It is considered to be a form of complementary and alternative medicine (CAM) not compatible with modern medicine.
    • Modern, non-alternative chiropractic (also known as non-vitalistic) is less common and is more compatible with modern medicine.
  • Chiropractic spinal manipulation is generally safe. There is a small risk of a pain flare, and an extremely rare risk of stroke if the neck is manipulated. It can generally be used safely alongside standard treatments.
  • Spinal manipulation may help with some forms of acute pain, but there is a lack of evidence for chronic (ongoing) pain. There is no evidence that it can treat organ problems.
Are chiropractors qualified and licensed?

The New Zealand College of Chiropractic is the only place to study chiropractic in New Zealand. One they have done a foundational health sciences year, students do a 4-year Bachelor’s degree at the college where they study anatomy, neurology, philosophy, psychology, marketing, nutrition and x-rays, as well as having hands on instruction. The college appears to follow the vitalism school of thought. 

After training, chiropractors are governed by the New Zealand Chiropractic Board. This is a statutory body with various responsibilities that operates under the provisions of the Health Practitioners Competence Assurance Act 2003.

Source – https://www.healthnavigator.org.nz/healthy-living/c/chiropractor/

How to find a Chiropractor
  • Ask on social media (Loosely speaking, your local hub group, local noticeboard pages etc) for suggestions on GP’s close to your location
  • Talk to family and friends for suggestions 
  • Google “Chiropractor” in your area

Feel free to email or call Chiropractors ahead of time to discuss EDS, what their level of knowledge of EDS is, or whether they’d be willing to learn how to work with your EDS. If you feel uncomfortable with their answer then find a different physiotherapist – you do not need to put your health at risk just to avoid making them feel bad!

Counselling, Psychologists or Psychiatrists

Having EDS can take its toll on your mental health, and it’s normal to grieve after a life changing diagnosis. It can be overwhelming dealing with EDS on a daily basis, and there is no shame in needing to talk to a neutral third party.

Some helpful tips

  • Search each profession’s umbrella group for a counselling, psychologist or psychiatrist (or ACC if that’s relevant) who is governed by guidelines for their professional practice. These guidelines are there to protect them and to protect you.
  • The person you choose doesn’t need in-depth knowledge of what you are struggling with. Any good counselling, psychologist or psychiatrist will be able to support you
  • You can get a referral from your GP to speak with someone in the public health system; keep in mind, this person may not have counselling, psychologist or psychiatrist qualification. therefore may not follow the same rules around confidentiality and privacy.
  • You can choose to see someone different if you don’t feel comfortable with the person you’ve met with
  • Ask the person to tell you about the complaints process.. and make a complaint if needed. You can complain to the person’s place of employment, their professional umbrella group & the Health and Disability Commission.
  • Keep looking until you find someone you’re comfortable with.. this is your right and the best way for therapy to be effective.

For more information on how you can take charge of your mental health, or for mental health support links please see our Mental Health page.

Further Resources To Help

Making the most out of your doctors appointments – have a read through our tips and tricks to navigating your health appointments

Financial Services – For services you may be entitled to help lessen the costs of medical appointments

Travel Support – For services that can help pay for, or lessen the costs of traveling for medical care