A good friend has not had a good experience in hospital. Below is a letter she has asked me to share publically.
She happens to have cerebral palsy and luckily I have been hanging out with folks with speech intelligibility issues and who use power wheelchairs since I was barely able to talk and walk myself. My friend and I get on well. I admire her humour and tenacity. I think she just appreciates that I am not as clueless as most.
Clearly not all hospital staff have been as fortunate as me in being prepared to feel comfortable knowing how or what to do to support someone with a physical disability. They really didn't understand that she had no physical or langauge disabilities. It was painful to watch.
It is such a fine line between making sure that someone can advocate for themselves and not letting unmet needs go unaddressed for hours at a time.
Anyway, we snuck out during the non-visitor hours and wrote a letter that she wants the world to be able to read. She has asked me to remove her name but made it very clear that she wants this shared online.
Within a day, the staff started to shift and her basic care needs (being fed, being in her chair, being positiong properly in bed to sleep, being taken to the toilet) are now being mostly met. I don't blame the staff, but it is an incompetent system that doesn't prepare them to do better.
Her communication and social needs are still not being met yet though.
Enough about me - here is what she wants to share:
To whom it concerns,
My name is [name withheld by request] and I am a 57 year woman with cerebral palsy and no intellectual disability. I am a fiercely independent woman who is used to living alone with visiting care staff.
I had a planned stay in the MAPU for a couple nights.
I want to put a complaint in about the poor system for supporting disabled people in hospital
The system stinks. It has no idea how to treat people with disabilities. We are normal but depend on others for quality and respectful care.
All abled people make it difficult for us to be independent and in charge of our lives. My hopsital stay was another example of this.
People who worked with me didn't greet me and sometimes didn't even look at me.
People didn't listen and take the time to understand my needs or my words.
I didn't trust that people would come when I asked for help or rang my call button. It could be 15+ minutes without somone even saying "I'll be there soon." I didn't need to take priority, but I needed to know if someone had heard me. I can't indepedently go to them.
On Saturday morning, I was in pain and no one would move my legs.
If my friends and family hadn't have come in, I don't think anyone would have understood me. No one tried to support my communication needs.
I was promised that I could go outside on Saturday, but only for 5 minutes and I would have to wait until 7 pm. They never kept this promise.
They put me back to bed too early. Bed is not comfortable for me. It hurts and it is only for sleep. I lose all my independence once I am in bed.
On the first morning, I asked when I could go in my wheelchair. I was told maybe not at all. I had to beg for this basic right. I appreciate that they are busy, but to be told there was no option without physio was horrible (and incorrect).
Luckily the nurses put me in my chair, which greatly improved things, but only after we made a fuss.
Even just thinking about a whole day in bed and not in my chair, let alone an entire weekend, made me feel horrible, hopeless, trapped, angry, and like an object. My friend (who happens to be a trained speech-language therapist) even expalined all the reasons why I needed my chair, but it didn't feel like it was priority.
Staff talked to me like I was a 'dumbie". They overexplained basic things which drives me up the wall (for example, when feeding me, they told me repeatedly to open my mouth even though I always open my mouth as a signal for when I am ready for the next bite and not before). They also talked to the other staff or my visitors before talking to me. Sometimes they didn't even include me in the conversation. I didn't feel like they understood that I was smart. They even talked on the phone about other patients in front of me like I wouldn't notice or understand. They moaned about their backs while hoisting me.
They didn't take the time to know me as a person nor listen to what I was saying.
Overall I felt consistently ignored and like I had to beg and fight for basic care unless I got mad. I wanted to swear, but I didn't.
I wasn't fed lunch one day. But I did appreciate how [staff name redacted] (who brought the meals) talked to me and check in on me)
It was often more than 2 hours between when people looked in and checked on me.
I had to wait over 20 minutes for the loo (the only reason I am in hospital - and after laxitives, I really needed to go)
When I asked for my legs to be adjusted, no one helped. I had to have my friend move my legs to stop the pain.
Mostly I just felt invisible and like no one knew how to care for me or communicate with me. This was really different from how I heard other people being talked to (that are normal and not physically disabled like me) . I don't understand what the problem is. Why is it still so hard for them to know what to do with people like me!? Is it training? Is it the rules? Is it attitudes? I really don't know, but would they feel if they if they were in my shoes.
I even had my friend write care guidelines with me, but no one looked at them.
I would like someone to meet me in person to discuss and understand my complaints. This needs to be done in person as I don't have interent at home and people can't udnerstand me over the phone. I needed support to type this email as well, so email isn't an option either.
I am happy to come to in to hospital, at least 1 hour if you are going to have any chance of understanding my speech.
I need advance warning, so I can I organise a ride and someone to support me for the meeting.
I have to make the [name removed] Hospital better for others.
If this meeting is not scheduled before Christmas, I will be writing to my MP and the disability commissioner.
My concerns were about the system, not any one person.
My care was NOT ON. NOT AT ALL.
Disgruntled, [name withheld by the person's request]
dictated and key words independently typed Each word triple checked and approved by [name withheld for privacy]