Ann-Marie: When Katie got out of hospital, she had a central line in so we had a visit from the community nurse, quite regular. And she knew, the community nurse knew that we were … not struggling … we were glad to have Katie home, but when you don’t have that medical [team] behind you at home, you know, you were used to that nine months in hospital with a doctor or a nurse, and then when you get home the fear doesn’t leave you, and then when you have two other children. And the community nurse seen that we were juggling with our two sons and with Katie and she mentioned the Children’s Hospice to us. I didn’t expect what I seen, it was just so bright, so lovely. Katie was well cared for. For our sons we tried to juggle, do our best, but when we went to the hospice it was like you became a family again, because they involved the siblings and that’s what I really loved about it, it wasn’t just about Katy. They made sure that, any activities, that the siblings were involved. It was like when we got respite they couldn’t wait to go because they knew that they were going to get a lot of time with us (Johnny: spoilt for a while) a lot of time with us, and we had no worry because Katie was being well looked after by a medical professional. If you need the physio, which would benefit Katie, the social worker, anything that you request, they are out there to help you.
Johnny: At home it’s hard to get a proper night’s sleep, because you’re up, Katie tube feeds and her feeds have to be changed every four hours, so you’re up through the night, where at the hospice you’re getting a full night’s sleep. There’s no machines bleeping where you have to jump and, then same, you don’t have to be up at a set time in the morning. You can lie on in the hospice.
Ann-Marie: If you have anything on your mind they’ll get it sorted for you.
Johnny: They’ll actually phone you a week or so before you are going up and ask is there something in particular that you need if you come up or is there something that Katie needs or is there going to be a birthday or something in the family, where when Katie goes they can make a card or different things. Or if there is something special that Katie likes that she can’t always get at home that they’ll put it on for her.
Ann-Marie & Johnny: If anybody is in the same circumstances as me and Johnny and they are given the opportunity to go to the hospice, I would take it.