Practical things to know about hospital stays, specialist treatment and planning ahead.
Going into hospital
Take a hospital passport with the essentials: how the person communicates, their medication, epilepsy plan, feeding plan and what distresses them.
Ask whether the hospital has a learning disability liaison nurse, and ask them to be involved from the start.
You can ask to stay with the person. You know them best, and staff may not recognise their signs of pain or distress.
On a neurology ward, ask who the lead consultant is, what the plan is for today, and what would make staff call you.
Before discharge, ask for everything agreed to be written down: medication changes, follow-up appointments and any new equipment or support.
Oxygen at home
Home oxygen, including oxygen concentrators, is prescribed by the person's NHS team, who arrange the supplier.
Everyone who supports the person should be trained to use it. Add it to the training record.
Tell your home insurer, and plan ahead before travelling, including for holidays and flights.
Ketogenic diet for epilepsy
A ketogenic diet is a medical treatment for some people with drug-resistant epilepsy. It must be run by a specialist dietitian, including for people who are tube fed.
The Daisy Garland
Registered charity 1106530 (England and Wales) · Totnes, Devon
Funds free specialist ketogenic dietitians in children's hospitals across the UK, including in Scotland, and offers keto recipes, resources and grants for seizure monitors.
Some young people with PMLD are told in childhood that they may not live long. Many are still here as adults, and thriving, but the services built around them as children often stop at 18 or 21, and adult services have not planned for them.
Ask for transition planning well before 18: health, social care and education together.
Ask which adult consultant, nurse and therapists will take over, and when.
Make sure benefits move over in time (see Benefits from 16), and that guardianship is in place from 16.
Keep a record of every gap in support in My file. It is evidence if you need to complain.
Hospice and palliative care
Palliative care is about living as well as possible, not only about the end of life. It can run alongside other treatment for many years.
CHAS (Children's Hospices Across Scotland)
Supports children with life-shortening conditions, from before birth up to age 21, and their whole family, in hospice, at home, in the community or in hospital.