Being Disabled in Hospital: Tips for managing an admission

Suggestions on how to manage once you’re admitted

A black and white image of a page in a notebook titled "NOTES". The following list is "Talk to nutrition nurse, Email dietician, Antibiotics, Painkillers, Mattress, Turning
Notes for talking to professionals

If you’re in the hospital, the suggestions I made for preparation may not be much help. What can you do once you’re there to ensure that your needs are being met?

1. Find ways of staying in control. It’s easy to become institutionalised, to be the Patient, to lose who you are and forget that actually you know more about your needs than anyone else. Ask to be in control of as much as possible – your food and drink, your medication, your sleep cycle. Try and be washed and dressed each day if possible. Maintain that focus even if staff find it difficult.

2. Advocate. Either for yourself, or have a friend or family member, or PALS to support you. If you know you need something, you’re the expert on your needs and you should feel able to communicate that you need it to the staff. If you don’t receive it, but you really need it, be prepared to keep pushing. Remember that it is possible that you are wrong, but trust your intuition

3. If you think you’re ill, tell the staff, and keep telling them. On one admission, I kept saying that I thought I was developing sepsis and the staff didn’t act. I ended up in intensive care with organs starting to fail. If you know something is badly wrong, make the staff listen. If they won’t, ask for the doctor. Don’t do this over something minor, but remember you know your body and if something is badly wrong, the staff need to know.

4. Be clear. Prepare what you want to say to the doctors, pharmacists, nurses, nutrition team, tissue viability team, and any other teams that are involved in your care. Write out what you want to ask them, and write out your answers. Remember, they could come by at any time, so you need to be prepared for that to happen.

5. While you’re in there, remember your interests. Doctors will usually ask you a question that boils down to “what do you do?”. I’ve found that they’re less patronising and treat me like a person rather than just a set of symptoms if I have an answer to this question that conveys that I am a successful adult living a life that they would deem valuable. This plays into disableist prejudices – but if it will get me adequate care, I do it.

6. Rest. You’re there because you’re not well, and you need to rest in order to recover. You may well feel very rubbish at the moment, but even if you feel better, either rest or focus on rehabilitation, don’t just sit there getting stressed, even if its unavoidable.

7. Remember who you are outside hospital. When being there strips your identity away and takes your independence, forcing you to have others do your medication on their timescales, when you have no control over your days, remember who you are. Do some reading that focuses on who you are outside the hospital, keep up with your friends, and don’t let the place swallow you.

8. If your needs aren’t being met, keep raising them. Staff might be very busy and overwhelmed, but it’s important you get the care you require. If you asked for medication and didn’t receive it, be prepared to ask again. The staff member may be busy, but they may have completely forgotten and need reminding. If you don’t remind them, they might not know that you needed anything, so it’s important to tell them.

What are your best tips for coping during a 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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