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Gastroparesis and advice for adults

Employment

The issue of employment generates a lot of questions. Questions surrounding how to manage work load during work absences, disclosure of illness to employers and work colleagues, and types of work suitable. 

Communicating with your medical team:

  • It is not uncommon to feel intimidated and rushed when communicating with your treating team.
  • Your gastroenterologist is a specialist and has trained for many years to provide you with an empathetic and expert service.
  • It is important for your health care that you develop a relationship with your gastroenterologist that is based on respect and honesty and that you feel comfortable sharing information about your illness.

What can you do to improve communication with your treating team?

1.  Keep a diary of your symptoms and concerns

Be honest with your gastroenterologist about your symptoms and any drugs or medication that you may be taking. Record your symptoms in your diary. For example, record whether you experienced bloating, vomiting, or any pain.  List any complications you have with your gastroparesis, medications you are taking, and any side-effects that you may have experienced.

Over time dates may get a little hazy, so you may want to keep a notebook with the dates of any surgical procedures, investigations and results, your medical history, allergy information, and any family medical history. Your notebook and diary will help you communicate succinctly about your illness.

2.  Make a list of all the questions you may want to ask your gastroenterologist

It does not matter how big or how small the questions may be, or how silly you may think the question is. Prioritise the questions you need to have answered at your next appointment and the ones that can wait until a later appointment. You may want to give your gastroenterologist a copy of your questions prior to your appointment so that your gastroenterologist can consider them. Also be aware that there are time limits to your appointment and that there will be follow up visits.

Commonly asked questions may include:

1.   What has caused my gastroparesis?

2.   What are the treatments available?

3.   Is there a cure?

4.   What are the side effects of medical intervention?

5.   Does the treatment cause sexual dysfunction?

6.   Are there alternative treatments for gastroparesis?

7.   How does smoking impact on gastroparesis?

8.   Can I drink alcohol if I have gastroparesis?

9.   What kinds of tests will be performed to confirm a diagnosis of gastroparesis?

10. Are there foods that may make my symptoms worse?

11. What symptoms do I need to look out for and who should I contact first, you or my GP?

12. What is the best way to contact you?

Having your questions answered may help you to feel empowered to take responsibility and to make informed decisions about your treatment. It is important to remember that everyone’s information needs are different and that it is also okay not to ask many questions.

3.  Take someone with you when you go to your medical appointment

Often when people receive test results they are feeling nervous and it is harder to concentrate and process information. You may consider taking someone to the medical appointment with you. Your friend, family member or caseworker can be there to take notes or just hear what your gastroenterologist has to say and discuss this at a later time with you. If you do not have someone who can attend with you, you may take notes, record the session or even request that your gastroenterologist write information down for you or give you recommended reading.

4.  Get a second opinion

It is okay to seek a second opinion before commencing a new treatment or having a surgical procedure.  You will not offend your gastroenterologist and your gastroenterologist will not treat you any differently if you seek a second opinion.  It is your body and you need to feel confident about your treatment decisions.

5.  Request time to make decisions

Unless your medical condition is in an urgent state, it is important that you ask your gastroenterologists for enough time to make treatment decisions without placing your health at risk for further deterioration.

6.  Ensure all members of your health team are communicating

Ensure that you have provided your treating team with the names and phone numbers of everyone involved in treating your gastroparesis. It is very important that your Gastroenterologist, GP, Psychologist, Dietician etc. are communicating and working together so that you are not receiving contradictory information and treatments.

7.  Request an interpreter

It is really important that you understand what your doctor is saying to you.  Most hospitals have access to interpreters or telephone interpreters.  You can request that an interpreter be present in your appointment with your medical practitioner.

8.  Enquire about support for your emotional health

Living with a chronic illness can impact on your emotional health.  It can cause stress, anxiety, depression, exhaustion, loss of confidence and self-esteem, body image concerns, relationship and social difficulties.  You can request that your doctor refer you to a psychologist within the hospital or you can access psychological support through theBetter Access Initiative by discussing your concerns with your GP. For further information please visit http://www.psychology.org.au/Assets/Files/Medicare_Fact_Sheet2.pdf

9.  Using Dr Google

There is a lot of good information on the web, but also some misleading information. Discuss with your doctors the websites that you are looking at, and ask your doctor if there are sites that they can recommend.

10.  Access your medical records

You may want to look over your records, or take a copy and have someone explain them to you. To access your records you can discuss this with your treating team and they will direct you to the Health Information Service of your hospital who will organize access for you under the Freedom of Information Act.  If you find that information in your record is incorrect, you can have it corrected.  For further information on accessing your medical records please visit http://www.privacy.gov.au/faq/health/q5

11.  Know your Rights as a patient

The Australian Charter of Healthcare Rights describes the rights of patients using the Australian healthcare system. To access a detailed summary of your rights visit http://www.health.vic.gov.au/patientcharter/consumers/summary.htm 

The following are some of your rights outlined by The Australian Charter of Healthcare Rights in Victoria:

  • Access:  You have a right to the health care you need.
  • Safety:  You have a right to safe, high quality care.
  • Respect:  You have a right to be treated with respect, dignity and consideration.
  • Communication: You have a right to clear, understandable information – and to ask questions – about your condition, treatment options, expected outcomes, side effects and costs.
  • Participation: You have a right to take an active role in your health care, and to participate in decisions about your treatment.
  • Privacy: You have a right to privacy and confidentiality of your personal information.
  • Comment: You have a right to give positive or negative feedback, ask questions and make complaints about your care.



MORE LINKS

If you are interested in other gastrointestinal-focused information and intervention websites developed and hosted at
Swinburne University of Technology,
please go to:

IBSclinic.org.au for individuals with Irritable Bowel Syndrome

IBDclinic.org.au for individuals with Inflammatory Bowel Disease

DISCLAIMER

This website and its content is not intended or recommended as a substitute for medical advice, diagnosis or treatment. Always seek advice of your own physician or other qualified health care professional regarding any medical questions or conditions.

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