After Hospital, What Next?

Last Monday's discharge planning meeting left my head all over the place. It felt like we were covering the same old ground, and coming up against the same brick walls.

A big stumbling block to giving Chrissy effective community-based support is that she isn't seen as a resident in the county where she'll be living. The NHS commissioner told us that this could close doors to a number of services run by the local authority, and observed: 'Chrissy could be disadvantaged simply because a social worker didn't fill in the right forms 9 years ago.'

The Local Government Ombudsman is still looking into the question of 'Ordinary Residence' as part of his investigation into the long-running funding dispute between the NHS & local authority over Chrissy's care.

Chrissy's plight and what Ordinary Residence means is summed up by Graham Faulkner, Chief Executive, Epilepsy Society, in a link on my post last year: http://jgregorysharingsstories.blogspot.co.uk/2011/09/specialsaturday-post-my-special-needs.html

Another big question mark hangs over the medical support that Chrissy will receive in the community. The learning disability team that worked with her before her eviction from a care home in 2009 covers a wide area in the community too, which further restricts our options. The team focused mainly on environmental causes for Chrissy's challenging behaviours & cited unsuitable residential placements with carers lacking the necessary skills to support Chrissy effectively. This led to care staff that worked with Chrissy saying they felt unsupported by the team when they asked for help, and worst still their inability to manage Chrissy's more extreme behaviours was frequently cited as their cause.

Ian & I believe the learning disability team's view was over-simplistic and downplayed a crucial factor - medication. The most marked long-term correlations in the intensity and nature of Chrissy's challenging behaviours have occurred with medication changes. So medication and environment must be optimised to help Chrissy achieve stability, and this has proved easier said than done in the two community-based residential services that she's lived in since reaching adulthood. Having said that, Chrissy has had some wonderfully open-minded medical professionals working with her over the years so we know they're out there!

Suggestions were made around the table about different types of housing options but it all came down to support that Chrissy might need in the community if she were to continue to have ‘blips,’ as her psychiatrist called them. Chrissy may be relatively stable when she leaves hospital but her mental state and health will always be precarious. There need to be robust contingencies in place or we could end up back where we started with support systems collapsing.

In September there will be another Care Planning Meeting. By then I expect progress to be be made to resolve the Ordinary Residence issue and a commitment, either jointly or singly, from commissioners towards making concrete plans for Chrissy's future care. This limbo situation can't go on...


I am a SWAN UK (Syndromes without a Name) blogger