I have just come out of my third stay in hospital this summer. It’s sucked, but there have been many things I’ve picked up along the way that helped empower me during my hospital stays and made them suck a little less.
1. Get friends to bring you food
Hospital food feels far from fresh or nutritious. Ask friends to bring snacks/fruit/etc, and (if you can) full meals from time to time. You usually have access to a patient fridge that you can store things in, if needed.
If you can’t eat, request nutrition drinks (get chocolate flavour - the rest are gross!). It’s so important to keep your strength up, even if it’s the last thing you feel like doing.
2. Do your research
Talk to friends/friends of friends/trusted health professionals, about what’s going on. Get a friend to help you research (stick to scientific papers/research based articles if using Google!), if reading is difficult or you feel overwhelmed by all the information, which often I found I was.
It’s so empowering when you are able to meet the doctor in discussion, rather than feeling lost or helpless.
3. Get a friend or advocate to sit with you during doctor rounds
I could write a whole article just on the power imbalance that often happens within hospitals. I dreaded the doctors round every morning in hospital. Some doctors were amazing, but sadly I felt patronised and unheard by a lot of them.
It can feel so intimidating having up to 5 or 6 doctors round your bed with just you to fight your corner. So, get a friend to be there with you, and/or ask some of the extra doctors to step out if you need to - explain you feel more comfortable with just one or two there.
Often doctors rounds happen outside of visiting hours, so ask for an approximate time they will visit and plan for a friend to be there. In some hospitals (particularly psychiatric hospitals), there is also an advocacy service. If they don’t have this and a friend can’t be there, ask for a nurse to be there during the rounds, instead.
Just the presence of someone there for me, helps me feel stronger in my rights and opinions, and improves my ability to voice my needs.
4. Make notes of what the doctors say
Keep a record of each daily visit and what results they’ve told you, or tests/services doctors say they’ll do. Get proof of referrals/follow-up appointments they said they’ve made. I was told both referrals and follow-up appointment had been made, but upon discharge from the hospital I discovered they had either been done incorrectly or not at all.
I also generally had a different doctor every day, and they would often say something different to the doctor the previous day. Often suggested tests wouldn’t get done, or results would get confused. Chase things up if they haven’t done what they said they’d do, and don’t be afraid to correct them if they get something wrong.
5. Call the patient complaints line if you need to
In June, whilst in hospital, I needed a catheter for the first time, because I suddenly couldn’t pee on my own. On the day of discharge the doctors realised I hadn’t seen a urologist during my stay. This was a mistake - the doctors acknowledged that thought they had done it. I requested to see one before I was discharged, but they told me to wait 6 weeks for an outpatient appointment instead - despite the urologist being literally round the corner in the hospital. So, I phoned up PALS (Patients Advocacy and Liaisons Service), and explained my situation. Within half an hour, a urologist came to see me.
6. Ask for help from friends/family
Tell people what’s happening: people want to help. Hospital was rubbish, but the love and help that came from my friends was amazing. People really showed up, and they couldn’t have done that if I hadn’t communicated what was happening.
If the idea of asking for help makes you squirm, get a friend to set up a WhatsApp/Facebook message group and to pass on messages of what you need, for you.
7. Count the blessings
I usually hate sentences like that, or the suggestion of gratitude practices when things really suck, but during my first stay in hospital I found myself feeling incredibly grateful and aware of the fact I was receiving all this health care for free. Never did I have to work out whether I could afford it. It helped me have perspective whilst feeling frustrated with the power imbalance/patronisation from doctors.
Sleep as much as you can, and get decent earplugs. Hospital is so noisy, and this generally doesn’t dampen down much at night time. Plus, you are always woken up so freakin’ early...
I made up for any sleep I missed at night, by sleeping during the day. We also need to sleep more when we are healing.
9. Take in entertainment and distraction
Bring your own (or borrow a friends) iPod, laptop, phone, magazines, books, colouring books, drawing materials...
Music/films/audiobooks can be healing balms within noisy wards.
10. Get all your test and scan results printed out in detail when you leave
Take them to other health professionals you see, or look at them yourself because they can be a good insight into what is happening in your body and what needs to be looked at in more detail. Often the NHS’ ‘normal’ ranges in blood tests are so wide that your results can still be high or low, they just fit within the ‘normal’ range so it doesn’t get flagged up.