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My lived experience journey.

As a person with lived experience of disability, I sometimes participate in activities that are based on my lived experience - whether that be in general, in different settings or for organisations, groups, committees or government departments.

I have recently been in hospital, twice in the past month. This has not been an easy time for myself and my family but I have come out the other side and feel ready for new challenges.

What happened to me in the hospital you might ask? I've been in 2 hospitals, for 3, 3-5 day stays, 3 times in the past 6-7 months. I have discovered that staying in hospital when you have a disability is quite difficult and very, very frustrating. That's why I'm taking this information to the hospitals in question; to relay to them the issues we face when staying in hospital is not something we want, but something we need.

I found

● The bathrooms are full of hazards eg,

1. The floor gets wet and is slippery, I couldn't move and they had to wipe the floor so I could exit the bathroom

2. There is a knob jutting out of the floor at the PA hospital transit lounge wheelchair toilets - I didn't see it and fell. The ambos had to use a device called a camel to get me up.

3. There is a whole lot of equipment in the bathroom, very difficult to walk around when needing to go to the toilet

4. There is an emergency button but not a ‘need support’ button. I needed help and pressed the emergency button only to have everyone run in - I just needed support but if you can't press a button for support and open the bathroom door it's hard to find someone to go back in the bathroom with you

● The hospital beds are not wide enough and you have to ask to be taught how to operate the controls yourself.Note - unfortunately, the hospital staff don't tell you how to do things, you need to be your own advocate in hospital. Ask for what you need and don't let the fact that they are busy stop you from finding out what you need to know.

● Support with self care needs to be set up with the nurses - if you need cream applied, wound care, help with your movement, particular medication, puffers etc tell them or get a support person to do so

● The ambulance will not transport your walker if you use one. I had to get transferred in a stretcher but they do have hospital walkers that you can use when you are in there.

In Australia you have healthcare rights - here is a video to explain those rights - https://youtu.be/6wrsfyk8UAE?si=ARmUz2cKPk9elG1W

Via the web - "Your healthcare rights | healthdirect" https://www.healthdirect.gov.au/your-healthcare-rights

The 7 basic healthcare rights are

1. Access

2. Safety

3. Respect

4. Partnership

5. Information

6. Privacy

7. Give feedback

Access

You have a right to get the healthcare services and treatment that you need.

Safety

You have a right to get safe and high-quality healthcare that meets national standards. You have the right to be cared for in a safe environment and feel safe when being treated.

Respect

You have a right to be treated as an individual. You have a right to be treated with dignity and respect. Your culture, identity, beliefs and choices must be recognised. They must be respected.

Partnership

You have a right to ask questions. You have a right to be part of open and honest discussion. You can make decisions with your healthcare provider. You can make your own choices if you are able and want to. You can include other people in planning and making decisions about you. You can choose who these people are.

Information

You have a right to get clear information about your health issues. You have a right to be told about the possible benefits and risks of different tests and treatments. This information should help you decide what you want to happen. When you agree to have something done, it should happen only if you are given all the information you need. This is called ‘informed consent’. You can get information about services, waiting times and costs. You can be given help so you understand and can use the health information. You also have the right to have a look at your own health information and records. You must be told if something has gone wrong during your healthcare. You must be told how it happened. You must also be told how it may affect you. You must also be told what is being done to make your care safe.

Privacy

You have a right to have your personal privacy respected. This includes keeping information about you and your health safe and confidential.

Give feedback

You have a right to give feedback. You can make a complaint without it affecting how you are treated. Your concerns should be listened to. Answers should be given to you clearly and in a timely way. You have the right to share what has happened to you. You are allowed to comment and help to improve health services. If you are not satisfied with what happens, you can make a formal complaint.

Below are places to go to make a health complaint in your state or territory:

● Australian Capital Territory: Health Services Commissioner (via the ACTHuman Rights Commission) — call (02) 6205 2222.

● New South Wales: Health Care Complaints Commission — call 1800 043159.

● Northern Territory: Health and Community Services Complaints Commission(HCSCC) — call 1800 004 474.

● Queensland: Office of the Health Ombudsman — call 133 646.

● South Australia: Health and Community Services Complaints Commissioner(HCSCC) — call 1800 232 007.

● Tasmania: Health Complaints Commissioner — call 1800 001 170.

● Victoria: Health Complaints Commissioner — call 1300 582 113, or the MentalHealth and Wellbeing Commissioner — call 1800 246 054.

● Western Australia: Health and Disability Services Complaints Office (HaDSCO) — call (08) 6551 7600 or 1800 813 583.

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I am preparing to share my lived experience with the hospital in question. Lots of things happened during my hospital stays and many flaws in the health/hospital systems were in full view of myself and hospital staff. As a consumer representative, I will be calling on the hospital in question to fix these flaws - to ensure that other consumers, particularly those who live in bigger bodies or who have a disability, are treated differently and with compassion. Hospital stays are never nice but hospitals and staff can make or break the consumer experience. I intend to ask why there were so many failures within such short periods of time. I am hoping to create changes that will positively impact future hospital users.If you have lived experience of systems that impact others, you too can act when these situations arise. Don't be afraid to use your voice for the good of all ...