Being disabled in hospital

Intuitively, you’d think hospitals would be set up for people with disabilities, long term health issues and wheelchair users. However…

When I stayed in hospital I found my preexisting and unrelated disability was treated badly. This included:

  • Not being able to go in ambulance in wheelchair – I had to transfer out of my electric wheelchair, into the ambulance wheelchair and then I could get put in the ambulance. This means when you arrive, you are reliant on hospital wheelchairs and people to push you. Both are in short supply. I got my manual wheelchair brought into hospital so had a bit more comfort and didn’t have to rely on hospital wheelchairs being available. Unfortunately it was really hard for me to get my electric chair so I couldn’t leave my bed without someone to push me.
  • This was made worse because nurses and healthcare assistants kept telling me to get off the ward and have a change of scenery. I understand the value of leaving the ward but the main friend I had visiting had hurt her back so couldn’t push me. When I explained this I was made to feel like a bad patient and there was a very clear implication that I didn’t want to get better or get out of hospital.
  • Related to this, I kept being ‘encouraged’ to walk further and for longer than I can and then all but being told off when I couldn’t.
  • I tried to ask for help getting out if bed and was told no because the healthcare assistant saw me walking on another day. My condition fluctuates and my issue wasn’t walking but getting out of bed because I had lost any core strength I had.
  • There was no help with personal care which would have been fine except my carers weren’t allowed onto the ward outside visiting hours. As a result I went days with my face not washed, my hair not brushed and my clothes not changed. It also meant I had to ask hospital staff to grab me things, to open bottles and to pour me a drink.  Some staff were fine with this, others less so but either way they had more important jobs to be doing.
  • There were no shower facilities for wheelchair users and I ended up using the one changing places toilet in the hospital to shower. This involved the cleaner repeatedly hammering on the door. I assumed it was someone needing to use the disabled toilet and rushed and kept shouting that I was only going to be a few more minutes. Finding out it was the cleaner really hacked me off…
  • Once I was able to get out of bed myself, it was in theory easier to go to the toilet.  Except because of my disability, I couldn’t physically lock the door…
  • Any preexisting health issues were ignored and I was denied morphine flat out on one occasion.  I was told because I was being discharged the next day I couldn’t have any because they don’t release people with morphine.  Even though it was unrelated to why I was in hospital and even though I have morphine at home.  I was given paracetamol and left to suffer.
  • There was a dramatic lack of understanding about my condition which would be fine and I’m happy to explain it.  However, what I don’t like is people who pretend to know about it.  There was a nurse who said she knew all about ED (which to me means erectile dysfunction or emergency department – I have Ehlers Danlos Syndrome…) and then was shocked when she discovered I was hypermobile…  There was a doctor who acted like he knew all about EDS and then couldn’t understand why I have morphine on prescription…If you don’t know, ask or at least google!
  • There was also an assumption that the staff knew best even when it came to issues like how to help me out of bed – if you hold my hands and pull, my wrists may well dislocate…
  • There were also environmental issues that would have bothered me even if I didn’t have a disability but possibly affected me more so…
    • I was suffering from migraines and these were exacerbated by harsh lighting and I would ask to have my curtains left shut to block some of it out.  These were repeatedly opened and I couldn’t get up to shut them.
    • Lights are routinely turned on at night which I understand but sleep is good for healing!
    • Being woken up at numerous points in the night to have blood pressure taken etc even once we’d reached a stage where I could have been sent home if my home care was in place.
    • Incredibly strong air freshener

I haven’t even talked about needing specific mattresses or other equipment such as a hoist or a feeding pump.  For another person’s experience, check out Emma’s blog – and look at other posts too whilst you’re there!

I’d like to end by saying that there were some amazing members of staff who were working with a lack of time and a lack of equipment and providing exceptional care despite that. There were a couple of people on my ward who I looked forward to seeing and would feel relief when I knew they were coming on shift.