A wonderful weekend with Chrissy. Her sister, Alex, and her nana were staying, & we made a Halloween pumpkin. Chrissy called it a witch! Her nana hadn't seen Chrissy for a few weeks and was amazed at the transformation in her now all the meds changes have been done.
But would this have taken place if Chrissy hadn't gone into an assessment and treatment unit? These units are getting terrible press with the latest Panorama Winterbourne View investigation on TV tonight. Politicians and learning disability charities are calling for these 'dumping grounds' to be decommissioned without delay - but don't we need robust alternatives in place first? Anyone who's read my previous posts will know that we've had our issues with Chrissy's ATU and I'm sure there are lots of awful ones like Winterbourne View - but you can't lump them all together. The truth is, it was her only lifeline. Community-based services failed her time and time again. People that present with the most challenging behaviours usually have complex needs that can't always be met in the community. Support workers need better pay & training, and don't get me started on communication. Many of Chrissy's support workers in the past have barely been able to speak English. The best learning disability psychiatrist Chrissy has ever had is the one at the ATU. It pains me to admit it, as we haven't always seen eye to eye on every aspect of Chrissy's treatment, but she's pretty impressive! Other psychiatrists that Chrissy's had in the community have been, at best, out of their depth &, at worst, haven't had her best interests at heart. In a nutshell, a vulnerable adult with challenging behaviour & complex needs can be extremely difficult to manage in the community. If community learning disability teams were up to the job, why has it taken SEVEN YEARS from the start of her deterioration for Chrissy to recover & be herself again?
We learned at last week's care planning meeting that Chrissy is due to be discharged from the ATU in the next couple of months. I'm very nervous about her leaving the unit's health-focused environment. Her epilepsy is still unstable but I'm hoping it's just a blip while the last of her previous meds leave her system - she can react strongly & paradoxically to even the smallest meds change.
To end on a very upbeat note - at the meeting, all Chrissy's therapists expressed their delight at her progress since the last lot of meds changes. They reported marked improvements in her cognitive skills, attention span & willingness to engage with others. She thoroughly enjoys going out shopping and on woodland walks and it's hard to remember the last time she disrobed during an outburst. These recent, very marked, improvements strengthen our case that she needed meds changes, not simply changes in her environment, to retrieve her quality of life. How on earth could the meds changes have been done in the community with what it has to offer currently? Badly run ATUs are the tip of the iceberg. Closing them down without suitable tried & tested alternatives in place is not the answer.
I am a SWAN UK (Syndromes without a Name) blogger
Firstly I am really pleased that Chrissy is responding so well to her meds change. I agree with you, although I have no experience of ATU's, I think it would be harmful to close them all down in a blind panic because of the Winterbourne scandal at least not until there are other arrangements in place. Some of the things you mention with regards to the support workers etc., i can relate to but with regards to caring for the elderly. My late Mother ended her days peacefully in a very good care home but not before being treated appallingly by some so called 'carers' at home and I have to say some hospital staff, some of which could not speak enough English to make themselves understood and others who just really did not seem to care. In my opinion, Care workers in general are paid a pittance for the work they do and therefore the jobs easily attract the wrong sort of people. Having said that there are exceptions to this and I know some carers who are very dedicated to the job they do and befit the name. Until the Government/Local Authorities make sure that carers whether for the disabled or the elderly are trained to the highest standard, are picked because they show a commitment to wanting to take on a caring role and who are paid a decent wage then unfortunately I think problems such as Winterbourne will always be with us. Sorry.. gone off on a bit of a rant!
ReplyDeleteHear hear! I agree with everything you say about care workers & I'm delighted that you've explained it so eloquently here. The good ones tend to rise up the ranks quickly, we've found, so Chrissy loses them!
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