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Outdated Best Interests.

October 26, 2018

I was feeling a bit sorry for myself yesterday morning. I was following the tweets from the National Advocacy conference. Seeing who was there and the passion of the delegates took me back to this time last year and it made me cry. I spoke at last year’s event. It was a few weeks after I started going to the gym again. I was quite impressed with the physical changes I’d made and was feeling a little cocky. I changed my presentation at the last minute and winged it quite frankly but it got a great reception. Reading yesterday’s tweets I felt envious and wished that mentally and physically I was in the same place I was in a year ago.

Lucy Series delivered a talk that covered supported decision making. I saw a quote from her piece – “Our understanding of learning disability has moved on. You don’t have to have passed a capacity test to express a will or preference”. Spot on Lucy. I’ve written about this for ages and it seems so unfair to me that learning disabled people have to go through so many more hoops than the rest of the population around normal life decisions.

I’ve had to make an almost impossible decision this week. Should I have the operation to remove the cancer now so soon after my heart attack and all the risks involved in the surgery? Or should I postpone the operation until my heart is more stable but run the risk of the cancer spreading? Ive sought a wide range of professional experience. I’ve chewed the ears of family and friends. I’ve made my decision. Some people will understand; others will think I’ve made an unwise decision. Whatever, people will assume my capacity so I won’t have to go through a process of demonstrating I have the capacity to make this decision.

What has gone into my decision making process? Of course, I’ve weighed up the pros and cons of the options. I did my Justice Baker balance sheet. But ultimately, it hasn’t been a solely head based decision. A big part of my decision doesn’t stand up to any “intellectual” scrutiny. Fears come into it. Hopes are a factor. My gut instinct has given me the most valuable data. My will and preference probably wouldn’t withstand the attention of a capacity panel. One thing is sure – for the whole week, I’ve not used the narrative of my best interests.

Steven, if we was in exactly the same situation, would not be afforded that same latitude. Nobody would have the time to give him the space to express himself fully. A combined capacity/best interests assessment would be squeezed into a couple of hours at best and a professional wouldn’t dream of exploring his fear and hopes with him. They would be considered completely irrelevant. And if he reached the same point as me and come to the same decision, it’s almost certain that it would be used as a determining example that he lacked capacity. And sod that the MCA allows someone to make an unwise decision.

The sooner the UNCRPD becomes the force that it could be, the better. Capacity assessments and best interests decisions have become so discredited because they are so often used to manipulate the professionals’ agenda. Nobody ever has their capacity questioned if they’re agreeing with the professional decision.

Will there ever be a level playing field?

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3 Comments
  1. If you read my blog post Capacity Test Fool of Law’ you will see Capacity Assessments were drafted deliberately to be impossible to pass. We need statistics on how many actually have passed this test- none. As a lawyer said in court mental industry is awash with people who do not even engage with assessor and deemed incapable as allowed under Code of Practice. Similar to best interests how many are found in best interests if not what State want . Good post,,,,,, its total discrimination to gain maximimum profit from these legally created commodities. Very sorry about your health stress must be unbearable and I wish you all the best and a good recovery.

  2. Pauline Thomas permalink

    My husband has just been diagnosed with bone cancer. Metastatic from prostate cancer he had 15 years ago. He has had many different doctors giving him tests, discussing his options, taking on board that he is a carer for my son and how stressful that is. In fact he has been really well looked after. Unfortunately my son is deteriorating too. He cannot walk properly indoors without both of us holding him up, he finds it harder to bend his body to sit on the loo. He has become challenging. Why is this happening to him? He gets a shrug of the shoulders and a don’t know from his medical professional.

    I do wish you well Mark. I can imagine all the scenarios that must be running through your mind. You are tenacious. You are still relatively young. You will survive.

  3. FF2016 permalink

    So sorry it’s still complicated with your health. Will pray for you. I hadn’t read clearly and thought you were okay.

    Yes, our gut instinct as humans should be to give someone what they want, and gut instinct is often right, as our sons and daughters communicate without words, not exactly as systems dictate – we should not decide for them unless they are in huge danger and don’t realise it. Least restrictive..
    What Lucy said is what many know and say, and have written, but good that she said it in her talk.

    Non-instructed advocacy where an advocate tries to support someone who can’t articulate with words was a norm, and still should be part of any big decision if needed.
    I’m beginning to hate the word decision, as it usually means others’ decision.

    I don’t know how we’ve got ever deeper into this maze, using experts who don’t know the person, as business interests are not best interests, and the person’s agenda should be the focus.

    I’m in a good place at the moment, just accidentally, as we’ve now got a good MDT, and I have found good people. Even our carers state the obvious, and my son shows serenity when his wishes are followed and the carers have a much easier time.
    Why did it take 7 long frightening years to get to this, and so much loss and trauma – I’m stunned and will never recover, but some recovery is possible.

    Sorry to hear Pauline’s situation.

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