A black and white image showing the inside elbow of a white person with hairy arms, showing a cannula going into their veins, with two IV ports.

What is it like to be disabled in hospital?

A black and white image showing the inside elbow of a white person with hairy arms, showing a cannula going into their veins, with two IV ports.
Arm with cannula and IV

Hospitals are designed to meet the needs of ill people. There is a lot of overlap between ill people and disabled people, especially in the elderly population. Given that, hospitals are remarkably bad at meeting the needs of disabled patients. This makes being admitted to hospital terrifying for me, as I know I will be left uncomfortable and at risk of serious infections and pressure sores.

I struggle to advocate for myself in this environment, especially as hospitals seem designed to strip your individuality and frame you as being your illness; nothing more. I always feel the frantic need to brandish my qualifications and prove that I’m a person, not just a body in a bed.

I’d been unwell for over a week, but had been hoping it’d wear off, but it didn’t and turned into a nasty infection instead, so I had to go into hospital. The problem is that when you’re severely disabled, getting your needs met in hospital is harder than it seems.

It took 3 hours from my arrival to being given a cubicle, but even after that, nobody came to hoist me. I was ultimately lying in my chair for 9 hours while I awaited being moved to a bed, which only happened when I went to the ward. This was very uncomfortable, but while I was in my chair I had some independent existence. I could go and find a nurse. I felt like a person. Once I was in bed, I was completely at the mercy of the hospital.

I had begged to be discharged – carers can monitor my obs, and I can go to ambulatory care for IV medications and fluids. I knew my sleep setup, circulating air mattress, organisation of all my stuff so I can reach it, and independence would be hard to recreate in hospital. I hate being forced into the patient role. They insisted on admitting me, and eventually I was sent up to the ward.

Once there, I was forced to stay awake for over an hour because I hadn’t been left with my breathing machine and nor had I been given a nurse call bell. This meant I couldn’t ask for help getting the machine set up and my mask sorted. I couldn’t ask for anything else either, like the fluids I was meant to have, or to change position. I was left with one flat pillow which has left me in a very uncomfortable position, where I’d normally be surrounded by pillows.

Nobody has taken account of my additional needs, in general. I was lucky to be given a side room, but my catheter bag wasn’t emptied for 14 hours. I was left in one position from 5am until about 10am when I’m meant to be turned two-hourly. Even then, I was only repositioned because I had a carer in. I was then in one position until I next had someone in, in another 3.5 hours. There’s not much point in me asking to be turned, because without pillows there’s no way of propping me up better. I’m incredibly stiff and sore, with no way of relieving it. I have a pressure sore at the moment, and it’s crucial that I’m repositioned enough.

The nurses haven’t left me with access to the bed controller or a nurse call bell. My carer set the call bell up for me, but the nurses shouldn’t leave you, especially in a side room, with no way of seeking help, and it’s now fallen from the table. My bed controller doesn’t work and is full of exposed wires. Most of the plug sockets in here don’t work either, or work intermittently. There’s just a fundamental lack of understanding that disabled patients might have different needs to meet, and those needs might require more support from a Health Care Assistant or nurse.

For now, I lie stiff and sore in my side room. The nurse call bell has fallen from the table but being in discomfort isn’t an emergency. If I need help, all I can do is yell, and that would be difficult for me. I’m badly positioned and very unhappy – it’s really not pleasant feeling this stuck. They’ve taken control of my medications, and now do them at their timings, including at midnight, when I was able to manage totally fine with my carers. I’m in the right place, I just wish hospitals knew how to better meet the needs of patients like me.

What support have you received during a hospital admission? What has been done well, and what could be improved?

Comment here, on twitter @jamierhale or on facebook

I hope you found these suggestions useful. To read the other blogs in this series, click Being Disabled in Hospital:
1. Challenging
2. What would I change
3. Tips for preparing for an unexpected admission
4. Tips for managing during an admission