Monday, 27 May 2013

Frontline Care, Funding Wars & another NHS Scandal

Earlier this year, in our search to uncover the truth behind the ongoing funding dispute over Chrissy's care, I made an official subject access request to view her records.

Two weeks ago we received three big boxes full of paperwork. For several days, each time I walked past them, I eyed them nervously, knowing that once I ripped the first box open I wouldn't be able to rest until I'd gone through the lot...

A week ago on Friday, when I pulled out the first jumble of papers, I was lost. I crouched over them for so long my whole body seized up. When I glanced up at the clock five hours later it was midday and I was still in my dressing gown. I pressed on. A fractured ankle in 2007 from banging her heels on a hard surface; a safeguarding alert where she'd wrongly been given Lorazepam by a trained nurse 'just in case;' an optician receipt - Chrissy had broken her carer's glasses by hitting her in the face. There were many similar incidents recorded from 2007 onwards. I spent the next four days reading the records, scanning in the ones that were relevant to our legal challenge and crying my eyes out.

I'd been made aware of all major safeguarding issues but I was stunned by the level of aggression that Chrissy had displayed towards carers and women she'd lived with. Maybe it had been underplayed so as not to upset me? We get the occasional smack at home but we can normally tell when it's coming and keep a safe distance. If we do get in the firing line the smacks rarely hurt as they lack power or aim. The point is - why had Chrissy (who has the intellectual functioning of a two-year old) been put in a position where she could keep doing this to herself and other people, and what did these behaviours say about her level of distress?

The documentation reveals that Chrissy's carers had struggled to get help from Chrissy's GP and psychiatrist and how they had been left to cope alone with insufficient support. I could see the impossible situation that they'd been put in, the high risk that Chrissy's challenging behaviour posed to herself and others, and why they had been forced to evict her. I read on to a report that described how some of Chrissy's carers were frightened of her and found her so exhausting that they couldn't work consecutive shifts with her. It was even implied in a carefully worded way that some carers had left because of Chrissy.

There's no doubt that Chrissy can be extremely challenging but she can be a delight too and has had a positive impact on many people's lives. It's clear that several of her long-term carers have become attached to her and been profoundly affected by meeting her. Over the years they've commiserated with me over how difficult her life can be but have also told me about happy times they've shared.

Last week, I had a chat with a lady who used to work with Chrissy before she went into hospital. She said: 'Chrissy’s such an amazing person and will always have a place in my heart… It was by working with Chrissy that I knew I had chosen the right challenging at times but so much more rewarding and satisfying by achieving the smallest of tasks. Please give her a hug from me…'

Later that day a nurse on Chrissy's ward described her in similarly warm terms. 'She's had us all in stitches with her hilarious comments....' she recalled. 'She's got such a fantastic sense of humour!'

One thing's for sure, no one forgets Chrissy once they've met her! Her challenging behaviours can be relentless and very distressing to witness but it crucified me to see her described as someone to be feared.

On the positive side - we got what we wanted from the records. We've uncovered extremely damning evidence that shows what was going on behind the scenes of the funding dispute. We knew that the PCT's 'if Chrissy was in a different 'autism-friendly' environment these behaviours would not occur' argument had failed because it could not be supported legally. Their second argument was even weaker. They acknowledged that Chrissy had had a recognised healthcare need before moving into the area BUT they refused to fund it on the basis that it was a pre-existing need. They were then told BY THEIR OWN SOLICITOR that this did not accord with NHS guidance so instead of coming clean and accepting responsibility, they came up with further ploys to dodge funding responsibility, including trying to pass the buck to two other PCTs. With the pre-existing healthcare needs argument they'd shot themselves in the foot by stating that Chrissy had healthcare needs before she moved into the area. In that case, shouldn't she have been eligible for continuing healthcare funding way before the local authority first applied for it in 2008?

The information we found explains a bizarre reason that Chrissy's psychiatrist gave for refusing to come out when a care home manager phoned her for help - because 'these behaviours aren't new.' Since their arguments to deny CHC funding failed legally the PCT have tried every other trick in the book to stall things. We don't see how they can wriggle out of this now and want an independent review. We will not rest until those responsible are named and shamed. We're appalled by what we've uncovered and how many people, including trained medical professionals, were party to this scandal. We acknowledge that Chrissy is extremely complex and needs high cost support but that's no excuse. We will never forget how funding issues exacerbated her suffering over a prolonged period. If we hadn't fought every inch of the way, God knows how this would have ended.

None of us should forget the wider implications of Chrissy's case - there must be other vulnerable adults, who don't have anyone to fight for them, suffering at the hands of unscrupulous NHS trusts.....

I support Unique & I'm a SWAN (syndromes without a name) blogger

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