Saturday, 3 March 2012

Good Care Planning & Changing Needs


We managed a walk to the village shop yesterday:-) There were a few hairy moments when we got there as Chrissy was like the proverbial kid in a sweet shop & got paralysed with indecision, then wanted everything in sight. Giving her a basket to put her goodies in reduced her anxiety (once she'd made it 'symmetrical' by re-arranging the handles). As we got near home I praised her for being a 'good lady' &, as you can see from the photo, she cheered!

I'd been inspired to take Chrissy out again after being told at her CPA (Care Planning Approach) meeting yesterday morning that her carers had taken her to M&S & a couple of other places without any major dramas.

Chrissy has two CPAs a year where the professionals and I sit around a table to discuss and plan her future care needs. Anyone with a range of complex needs like Chrissy's is entitled to have a care plan that's regularly assessed and reviewed. At the meeting everyone agreed that since recent drug changes Chrissy remains much more alert and interested in engaging with activities. The downside of this 'awakening' is that her outbursts are more violent, and she has hit staff and pushed tables over. We haven't seen this degree of aggression at home but she's more diva-ish than ever with a steely determination to get her own way. Last night she refused to go to bed until the early hours. There's no point in trying to force the issue so we turned all the downstairs lights off & left her to it. She soon came up and said 'you put me to bed,' but when we tried, she got caught up in her rituals, moving things around in her room so surfaces were clear and certain items, like her cover, were symmetrical. She kicked off several times but we got there in the end. We had the same rituals this morning at breakfast time. It tried my patience so much that I wanted to throttle her but Ian was amazing with her, & managed to de-escalate several potentially explosive situations by keeping calm and, somehow, just knowing exactly what to say & do at the right moment.

We still have some way to go before Chrissy is stable enough to leave the assessment and treatment unit and I still feel no clearer about what sort of home setup will suit her best. Now she is more alert her needs are changing and we need to look at a range of options. Cluster homes were suggested, which means that Chrissy would have her own space but be able to socialise when she chose. The commissioners can invite tenders from service providers, and we can be part of the interview and selection process. Right now, this seems to be the best way forward but we will have to see what can be provided locally.

I had been feeling very frustrated over how slowly things seemed to be moving, & the feeling that I'd had to drive every step forward, as described in previous blogs - but there's nothing like getting round a table to thrash things out with someone taking a strong lead - in this case Chrissy's impressive new psychiatrist.

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  1. As ever , very well written Jane. So frustrating that as ever we as parents have to " drive every step forward". I often wonder what on earth happens to those individuals who don't have strong advocates behind them. The bedtime ritual sounds extremely tough, would definitely try my patience. Team work is so important at times like these and it sounds like you and Ian make a great team. xx

    1. Thank you! Same as you, I fear for those that don't have strong advocates too, which helps to drive me on re sharing our experiences. A service commissioner told me recently 'learning disabilities is bottom of the pile' (when it comes to commissioning services). I've read lots of reports about failings in elderly care but found it very difficult to place stories about similar failings for people with learning disabilities. x

  2. Glad to hear about the positive changes that are happening at the moment. It is frustrating, I am sure, to have to fight so hard but I'm glad things do seem to be working. The Clustered housing sounds like a great diea. I hope you find somewhere suitable.

    1. Thanks LittleMamma. Still early days. Hope commissioners willl come through at last with what Chrissy needs. Meanwhile she has her sparkle back. Home now for Mothers Day & making us all laugh.