Being Disabled in Hospital: Tips for preparation

Tips for managing a hospital admission while disabled

A black and white image showing a weekly dosette box of medication, in which some of the compartments have been opened. Behind it is a clear bag containing inhalers.
Dosette box of medication with inhalers

In the preceding two blogs, I wrote about my experience being disabled in hospital, and some significant changes I would make to how disabled patients are supported. In the next blog, I discuss what you can do once you’re admitted to make sure your needs are met.

Here I want to make some suggestions to disabled patients for how to be prepared for a hospital admission (even an emergency one). These are things you can do in advance which will make your experience better.

1. Carry a piece of paper everywhere you go with your medical history, emergency contacts, and medication on it. On the back of mine, I have an informal version of an advance directive that clarifies my desires, principles, beliefs, and what’s important to me. This means if I am admitted, even as an emergency, I don’t have to go through everything a million times in order to make sure the staff understand.

2. When not in hospital, work out what you’d need if you were in hospital, and keep a list on your phone, so if you’re admitted you can ask for the things you need. It can be really difficult for you to advocate for yourself when in a ‘total institution’ like a hospital, but if you’ve worked out what you’ll need in advance, that can make it easier. Here are some examples:

  • A private/side room
  • Extra pain medication
  • Extra sleep medication
  • Ensuring you’re turned on an appropriate schedule
  • Being permitted visitors at all times to help with care needs
  • Ensuring you’re always left with a nurse call bell and bed controller you can use within reach

3. Keep a bag packed at home with all the things you might need if admitted. This way you can grab and go, or have someone pick up, knowing everything you need will be brought. If you’ve got things that you’d need (like a respirator, or a feeding tube pump charger) that you can’t keep in the bag, keep a list in the top of the bag of what other things you’d need someone to add to it and where they are. Think:

  • Medication
  • Feed supplies
  • Feeding pump charger
  • Respirator and charger
  • Catheter supplies
  • Emergency charging block
  • Phone charger
  • Key medical history
  • Clothing
  • Drinks (I love the very condensed squeezy squash to add to water)
  • Snacks
  • Money (coins) for vending machines
  • Emergency contact details
  • Neck pillows
  • Regular pillows (often lacking in hospitals)
  • Ear plugs
  • Eye masks

4. If you have positioning needs, consider how they’d be met. I tend to use the leg break in the bed, several pillows behind my head, a pillow under each arm., and a pillow on my lap to rest things on. This maximises use of my arms and hands, crucial because being ill makes me very weak. Make sure you know what you’d need in place to keep you correctly positioned in the hospital bed so that you can ask for it.

5. Prepare plans for any responsibilities in advance. If you have children, dependent relatives, or pets, make sure you know what you’re going to do with them if admitted. Make sure people know what the arrangements are, and that there’s someone who can, in an emergency, collect children from school or take a dog to kennels. This way, if something comes up, you don’t have to suddenly make plans then.

What are your best tips for preparing for an unexpected hospital admission?

 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



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