Hi Beth,
I am so sorry that you are going through this - its an incredibly stressful and time consuming situation to deal with.
My Mil has always been a handful, from the very early stages of her dementia journey - she is plagued by delusions and hallucinations that resulted in her displaying some incredibly challenging behaviour, which went from her being very verbally abusive and non-complient, to actual physical violence. She went into an EMI nursing care home, because of the latter development, just over two years ago. She is also funded under 117 funding.
Around last Christmas, her challeninging behaviour really ramped up and there were numerous incidents involving her assaulting or attempting to assault staff and residents. Staff stepped in to try and protect the residents, and were left bruised from thumps, slaps and kicks, scratched and gouged, had objects thrown at them and 3 staff ended up with dislocated fingers, one with a broken wrist. After months of the home begging for support, Mil got a new consultant and we finally had a meeting with the Health Board, regarding Mil getting 1-1 support paid for by CHC. At this stage, she had also developed a condition called tardive dyskinesia, which is caused by the over use of anti-psychotic drugs.
The initial CHC assessor stated that she was in urgent need of 1-1 care, and thats what he recommended. However, in steps the HBM - the Health Board Manager (who I am not sure is even human) and she refused the care. At this stage we were so worried and stressed by Mils behaviour, fearing like you that she would end up in a psychiatric unit for the rest of her days - it was a definite possibility. So, I wrote to the relevant minister at the Welsh assembly and made it clear that I was holding them completely responsible should Mil be injured, or should she injure another resident. I also made it clear that I had very deliberately videod some of Mils behaviour, and whilst I would rather not do it, should the CHC board fail to respond appropriately to her care needs, I would put that out in the public domain.
Mil was in receipt of 1-1 care within 3 days. The home organised a multi-disciplinary meeting with consultant, social worker, care home nurse and manager, and all stated that Mil needed this care to ensure both her safety, the safety of others in the home and to meet her needs - and I asked them all to put that in writing, and for it to be placed prominantly in her care plan. 10 days after the 1-1 had been given, just a few days after the multi-diciplinary meeting, the HBM reduced Mils care by 2 hours a day. 2 days later I visited during the hours when the care had been removed and found Mil lying more or less naked on the floor of her room, with the door wide open, shouting for help - this despite the home having put her on 15 minute obs and having only checked her 14 minutes before.
I covered her up, but took photographs of her and sent one to the minister, making it very clear that unless the 1-1 care was re-instated immediately, I'd be going to the press. I pointed out that a managed need is still a need, that every professional involved with her care had stressed how essential the 1-1 care was and that the HBM had failed to follow the national guidelines as regards the withdrawing of 1-1. It was re-instated within 24 hours.
And thats how bolshy you sometimes need to be. Its horrendous, its unfair, its wrong on every level, but thats what it has taken so far to keep this level of very much essential care for Mil. Every time the HBM calls a review, I'm there and I repeat my assurances that should Mil's care be removed without the express agreement of all the multi-disciplinary team then I will go straight to the press. And as long as Mils consultant, the staff and the social worker tell me that this level of care is needed, then I'll continue to do this. I hate doing it, I never, ever want to make public the video and the images I took - but when faced with decision makers who think more of the purse strings than the person, then I've discovered that you have to fight them at their level - which means go in all guns blazing, shouting and screaming and using anything and everything you can as ammo.
Good luck - as I said, its a horrible situation to be in xxxx
