Seraphina

Seraphina, in her early 50s, was diagnosed with multiple sclerosis (MS) about 20 years ago. About six years ago, she was diagnosed with cancer and hospitalised for surgery.

While in hospital her relationship with her family broke down and she was left with no support. She saw a social worker, but all he did was organise an Aged Care Assessment Team (ACAT) assessment, to enable her to move from hospital to an aged care facility.

He did not tell her about the NDIS or put her in touch with any support services, such as the MS Society.

‘I think he got himself into a situation that – he had never had to deal with a disabled person,’ said Seraphina. ‘There was nowhere for me to gain information on what my rights were, where to go. I was literally stuck in a hospital with nothing and no-one to support me or anything.’

Seraphina said her experience in hospital left her traumatised and ‘devastated’ by the fear she might have to return there.

‘I'm petrified that I just won't get out of the system again. And I'm like I know I have everything in place, that there should be no reason anyone can stop me. But … I have that word or that disability stigma in front of me.’

She said the hospital did not understand the needs of people with disability. Instead, staff viewed her as a ‘problem patient’.

‘There’s a 90 per cent chance they don't even realise that I'm disabled because they've just come onto shift so they don't know and then because I'm uncomfortable and I'm saying can you please … – “Oh, we've got other priorities”. It's like, well, I'm a priority. I can't sit myself up, like, I can't eat in bed. You need to seat me in a chair. I will choke if I'm lying in bed … There's no form that I can fill in saying these are my needs, I need to be sitting up to eat, I need to be this, I need to be that,’ Seraphina said.

‘Even having my own wheelchair there, you know, that's a nightmare because hospital staff think they can come in and it's just a wheelchair, they can take it … The minute I have to go into hospital it's like everything – I want my names on the arms, I want my name everywhere. Because physios and that, they just walk in and they're like “Oh here's a wheelchair” and it's like, “Ah, no, that's my wheelchair. My personal property, like, you can't take it.”’

She also felt discriminated against. A patient in similar circumstances to her but without disability was offered help to find somewhere to live. Seraphina’s only option was an aged care home.

‘I believe it was just the fact that I had MS and I would never be able to be fully independent.’

She had to argue for help to return to her previous level of strength and fitness.

‘I have to justify why I'm entitled to rehabilitation so that okay, no, I'm never going to get up and walk but I still need to be able to stand to transfer out of my wheelchair and into bed … They're just like “It doesn't matter, we'll just hoist you on the bed.” It's like, but I have to learn how to do these things again … Why am I not … allowed to get back to my baseline?’

Seraphina thinks a new role of disability liaison officer would help hospitals improve their treatment of people with disability.

‘I wouldn't be scared to go to hospital if I knew someone was going to be there and I knew I could say to that person okay, this is what I need, this is what I don't and, hopefully, they understand what I'm talking about.’