Advocacy

More musing over the Mental Capacity Act 2005, I'm afraid.

Let's imagine there's a lady, living with her daughter who's got severe Down's syndrome, who's struggling to cope. When stressed and frustrated she self medicates with a bottle of whisky. Well, most of the time it's half a bottle, to be fair. On one occasion she'd gone through three bottles in three days, but that's unusual. Some days are good and she doesn't drink at all.

Her daughter sits in the house all day and does nothing unless prompted to do so. She's unable to generate much coherent speech and can't convey her views eloquently, but clearly prefers her mum being around and when her mother's been in hospital for a few days for cardiac investigations (which were normal, her chest pains being put down to "stress") the daughter was unsettled and unhappy.

Mum is now dementing. She can't appreciate what needs to be done at home. She becomes upset easily, frustrated easily, so isn't coping so well. She's thrown things at her daughter then been mortified at what she's done. Her daughter consistently says she's fine and she wants to be with mum. Safeguarding adults proceedings were split in views on how this should be managed but at the time concluded the only practicable outcome to address risk was to separate them, and this response wasn't proportionate to the risks evidenced and was contrary to the views that both mum and daughter were expressing. Time's moved on and now her dementia is causing problems in how she manages through the day, too, with it all getting a lot worse.

A nephew visits once every week or two and helps out, doing shopping and sorting mail and attending to the garden when he's time. He's flagged up that things aren't going well.

Mum can't work out what her daughter needs any more. She doesn't know when her daughter's hungry or thirsty or tired or wants conversation. Mum doesn't know details of what day it is or what health problems she has or what medication's for (so has mis-managed prn "as needed" medication spectacularly and is lucky to still be alive). She can't prepare food/cook and has accidentally started a fire in the kitchen. She's wholly unaware of her deficits and believes she's fine, her daughter's fine, she'll accept home care coming in to help with tidying up and the like but that's all.

A formal Best Interest meeting was held, with home care and the nephew and CMHT and GP all attending. It's the only time I've ever seen a GP attend a Best Interest meeting, but it's a very good GP who's interested in mental health and has been intimately involved in this family's care for a good number of years. The nephew has strong views about how the daughter's cared for and argues strongly for her care to be progressed appropriately. We were able to think through problems and risks and wishes and benefits and consequences at length. The outcome was that mum needed to be in a 24 hour care setting, propbably an EMI care home. Daughter probably could be managed at home with a robust package of care, but this would be tried then reviewed.

Daughter refuses this. Mum refuses this.

We can progress this. They're both incapacitated adults, with respect to the decision of their future residence and care. We met to assess their needs and how these could be provided for them. We considered the views of all parties. The professional team had a consistent unanimous view. She needs care, she can't make a valid decision on accepting/refusing this, so under section 5 she's given the necessary care and all's lawful.

But, what about the real implications? She's being made to leave her home. She's being forced to be separated from her daughter. She's going to have to reside in a care home against her wishes and have to pay the best bit of £400 a week for the privilege. She's no way to get out, that she can action.

I asked if an Independent Mental Capacity Act advocate (IMCA) could be involved. The reply was that because the nephew's involved and attending meetings and visiting and can advocate for her, she isn't "unbefriended" so an IMCA can't get involved.

I know what we're doing is right. I know if it went to court for a Declaration (irrespective of what ever the court determined) that we'd be able to evidence that our decision making is rational, appropriate, proportionate, considered and progressing care in the best interests of our both patient and her daughter. Although I spend a lot of time advocating for my patients, and my nusring colleagues have a professional responsibility to advocate for their patients (the NMC requires them to do so), when we're the ones determing she needs to be in care (and her cash will have to fund this) a degree of outside scrutiny would seem appropriate.

It sits somewhat uncomfortably that there's nobody clearly advocating independently for her.