Today we had a meeting with the Clinical Commissioning Group (CCG). These are the people who have ultimate control over where H will stay; they control the money and if they say they won't pay for her to stay where she is then that's it, we would have to look for somewhere else for her to live. We have been immensely lucky that we haven't yet had a formal review by the CCG in the year and three-quarters since H has been at Holy Cross. They have asked for a couple of reviews from the hospital but haven't been in to visit yet.
H is still on a rehabilitation package which again is almost unheard of!! The normal period allocated for rehab seems to be between three and six months. H has been on rehab since January 2013. Her current period takes rehab funding to January 2015, two years after her arrival at HC. Personally I think it's fair, she's had a good period of rehab. They extended it again because of her big operation in July.
At HC they do not differentiate between patients on rehab and those on Continuing Healthcare (CHC). They receive the same treatment and therapies, it's just that the money comes from a different pot. Even though I know this, it is still worrying. The person who came seemed impressed by the therapists who she spoke with. She seemed happy that H's complex medical needs are being met at HC and probably could not be met elsewhere. It's always a worry that she could end up in a general nursing home where they have no real in-depth knowledge of brain injuries, T1 diabetes, cranioplasties, fluctuating blood sugars, collagenous colitis, contractures, PEG feeding, splinting, shunts and numerous other issues that she has to deal with. If by some miracle there was an equivalent residential home closer to Newbury that wanted young residents I would possibly think about moving her. It's about H, not us.
I hate being at the mercy of others but that's the way it is now.