When the Mental Capacity Act comes to stay

Featured article - 27 October 2016
By Lorraine Currie, MCA and DoLS Manager at Shropshire Council and carer

Once a year I allow myself the luxury to be introspective, melancholy, morose even. Today is that day. Today is the day six years ago that the Mental Capacity Act came into my home and my life rather than just my workplace and my desk. Up until 5.35 p.m. I had a beautiful, intelligent, forthright 17 year old daughter on the very edge of all her dreams. She was in the upper sixth about to complete “A” levels and study psychology at Manchester University. At 5.36 p.m. she was hit by a car whose driver failed to see her until she hit her, sending her flying to the other side of the small village road and fracturing her skull in numerous places, resulting in a catastrophic brain injury. After two episodes of ventricular failure and resuscitation which successfully brought her back she was transferred to a trauma centre and spent a year in hospital.

Then Mental Capacity came to live at my house.

Loss of opportunity to make mistakes

Now I find myself getting angry (understandable) as well as mourning what might have been. It’s not just about the loss of possibilities you see. It’s the loss of opportunity to make mistakes. It’s the loss of the opportunity to mess things up, it’s the loss of opportunity to behave in a completely wild and unfettered manner before getting older and settling down having learned lots of life lessons. Now professionals need to be involved in her life. She has to have a professional Deputy to make financial decisions rather than just blowing all her money and ringing mum and dad (as her 20 year old younger brother does all the time).

No longer allowed to be hormonal or have fun

She needs to make wise choices, otherwise she is being impulsive: and if you have a brain injury, that’s not just a hormonal moment, it’s a diagnostic fact that needs to be assessed, measured, and managed. She can’t heckle the comedian when she goes to the theatre or she’s being disinhibited - and goodness knows where that will lead. She can’t tell the handsome young physiotherapist that he’s very handsome (even though we all agree) or she’s being sexually inappropriate, and we all know where that leads. She has others in her life now whether she likes it or not. Even we who are closest to her have to try and second guess, based on her 17 year old self, what she would or wouldn’t have liked. No matter what we read about capacity not being a cliff edge it largely is, because, in the eyes of many, you either have it or you don’t

So I devote my life to making sure that she is supported to make as many decisions as she possibly can, while accepting that the reality of her cognitive impairment means that there are for sure some decision she can’t make. This is the Mental Capacity Act in action. I’d love to see implementation of the MCA which properly placed her at the heart of decision making, and supported her to make decisions allowing her to learn and grow and develop as everyone needs to.

Living is not just ‘passing the time’

She was asked recently by a neurologist “How do you pass your time?” She didn’t understand the question. I rephrased it “What do you through the day?” To this, she was quickly able to reply “Oh, I’m at College; I’ve just done a HNC in photography, and this year I’m doing the HND.” She is not passing time, she is living. Okay it’s not the life we all thought she’d live, it’s not the academic life she desperately wanted. But it’s full, and she is purposefully going about the process of living and learning. She is not just passing the time. The MCA exists to support her: not to provide a measure by which to rule her out of her own life, but to provide a protective shield to make sure she is fully engaged in it.

So, on the day I wrote this - today on the 27th September 2010 - the Mental Capacity Act came to stay: and six years on is our constant companion for good or ill.

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