Friday, 16 September 2011

A #Specialsaturday Post - Uncertain Times & Embarrassing Moments

The meeting we had yesterday to plan Chrissy’s future care was chaotic & disheartening. There was a roll call of apologies for absence – people worked on different days, a ward ‘crisis,’ someone away on a training etc. One of Chrissy’s care managers was present but he has no influence as his authority are not paying for her care. No one from the commissioning authority (funding ‘without prejudice’) attended. The psychiatrist has been unable to get hold of anyone there, which means we can’t plan Chrissy’s future.

I’ve already blogged about the funding dispute that’s leaving Chrissy in limbo. It will take a long time to plan her next placement as we need to get it right this time. A robust healthcare support infrastructure needs to be in place for starters. Another placement breakdown would be disastrous for Chrissy. The appalling state she was in through the latter part of 2009 still haunts me.

The hospital admission in January 2010 has improved Chrissy’s life. She is far more stable than she was 18 months ago but these changes have plateaued over recent months and we fear there will be little or no further improvement because the institutionalised environment isn’t geared up for her autism. There aren’t enough stimulating accessible activities offered. For months we were promised sensory integration therapy (‘The missing piece of the jigsaw,’ Chrissy’s speech therapist had said in March). Yesterday we learned that there had been a U-turn – they can’t supply it as part of the package; extra funding will have to come from the commissioners - the ones they can’t get hold of!

The meds changes took months to start due to all sorts of reasons (including the funding dispute) but we can’t thank Chrissy’s neurologist & psychiatrist enough for flagging up their concerns about one of her anti-epileptic drugs, Topiramate. We marvel over how much she’s ‘woken up’ since it was reduced from 50mg a day to 15mg. She is far more aware of her surroundings, and full of quirky observations & funny comments again. Last night, I was having eyelash extensions done for a special occasion. Chrissy was in the same room, playing quietly on the computer under Ian's watchful eye. Suddenly, she sat bolt upright, & announced: 'I poo myself in the kitchen.' The lady doing the eyelash extensions froze then we both collapsed into giggles as I explained that Chrissy probably felt the urge to go but had her tenses mixed up. There have been many potentially embarrassing moments like this but we just find them endearing, entertaining & funny. It's a good sign as it shows her irrepressible personality is no longer being clouded by too much - or the wrong - medication.

Embarrassing moments are part of what makes Chrissy who she is. We welcome them back!

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  1. Priceless - the poor eyelash lady.

    I hope your can sort things out soon for Chrissy. The frustration must be enormous.

  2. She was only young, bless her. First time she'd met Chrissy. I'm sure she won't forget her in a hurry!

  3. Just seen the bit about the frustration, Jane. Let's just say my husband had me on a tight leash at the meeting. I was fit to be tied!

  4. Thanks for a great post! I love that you found the blessings after dealing with so much for so long. Chrissy must be as blessed to have you as you are to have her! *hugs*

  5. Thanks Katrina, what a lovely thing to say. x

  6. Thanks for sharing Jane. You must be furious with the delays in sorting out an appropriate placement for Chrissy. It is ridiculous that these things take so long.

  7. Yes, LittleMama, the delays are infuriating. It's crazy that one nhs trust is paying out so much money without monitoring the placement or taking responsibility. It seems that it is easier for them to bury their heads in the sand than resolve the dispute. If this is how nhs trusts & local authorities run their organisations it's not surprising we are failing so many vulnerable people!

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