How to prepare in case we have to go into hospital?

Updated 08.09.20

Packing a hospital bag can be stressful, especially when someone you care about is unwell enough to require hospital care.

We’ve created a checklist of things you might want to include to help make it that bit easier.

If you have completed them, the hospital passport and/or ‘about me’ document can be very useful and allow the doctors/nurses treating your person with Rett Syndrome to access key information without needing to quiz you!

An Advanced Statement document can also be useful in communicating the family’s wishes to those treating your person with Rett.

For person with Rett Syndrome:

• Changing stuff – pads, wipes, sacks
• Pyjamas
• Bed socks
• Favourite teddy/toy
• iPad/DVD player + charger
• Favourite book(s)
• Wash bag – toothpaste, toothbrush, hairbrush, soap, flannel, hand towel, hand gel/sanitizer, scrunchie
• Hospital passport and/or
• List of medications printed to hand in – name, d.o.b., hospital number, meds, doses, times
• List of professionals involved + contact numbers, printed to hand in – name, role, contact number + school/respite/hospice details
• Box/bag medications (especially if prescribed any not commonly used in children’s wards, as pharmacy will likely not have in stock to prescribe immediately and need to order in)
• If peg/button/gastro fed – feed, syringes, extension tube, giving sets, pump (enough for a couple of feeds until situation established)
• Favourite snacks
• Drink cup/straw

For yourself:

• Your own wash bag and toiletries
• Notebook + pen
• Own medication
• Phone + charger
• Nightwear and change of clothes
• Purse including cash
• Snacks and water
• A good book/Kindle