Let’s talk about capacity…

We are very grateful to Anna Volkmer for sending us this blog, Lets Talk about Capacity…
She has just had an excellent book published –  Dealing with Capacity and Other Legal Issues with Adults with Acquired Neurological Conditions http://www.jr-press.co.uk/dealing-capacity-legal-issues.html. In it she describes how AAC methods, including Talking Mats, can be used to support people in expressing their decisions.

Prior to 1959 people who were considered “non-compus mentis” were cared for under the “parens patriae” principle. Literally translated this meant that they were ‘parents of the country’ and decisions to protect them and their property were made by the Crown (the Lord Chancellor). These people were often described as “Chancery Lunatics”. In 1959 the “parens patriae” jurisdiction gave way to the Mental Health Act. This Act instructed that “the judge may, with respect to the property and affairs of a patient, do or secure the doing of all such things as appear necessary or expedient…for making provision for other persons or purposes for whom or which the patient might be expected to provide were he not mentally disordered” (section 102 (1)(c)). Unfortunately, this Act did not make adequate provision for non-financial decisions such as medical decisions. During this period it was case law that guided professionals in supporting their patients who lacked capacity in medical decision making. It was not until 2005 that the first Mental Capacity Act was given Royal Assent, accompanied by the Mental Capacity Act Code of Practice in 2007.

I returned to the UK from a 5-year stint working in Melbourne, Australia, just after the Mental Capacity Act had been published. Mental capacity was on the tip of everyone’s tongues and as the speech and language therapist working on a multi-disciplinary team I became an integral part of this process. Patients I was seeing, often people with primary progressive aphasia or other types of dementia, were asking about how to make future decisions. They and their families were keen to understand how the mental capacity act worked, how to prepare for the future and how to have their voices heard. On the other side of the coin I was working on an inpatient ward where staff were concerned about ensuring we were fully assessing the decision making capacity of people with cognitive and communication difficulties, often holding best interest discussion to plan for the future of these individuals. Many of these decisions related to dysphagia, but others related to accommodation and finances.

What concerned me was the lack of evidence available across the speech and language therapy arena in this area. There was little to none in terms of written research, let alone written advice or even examples of good practice tailored to speech and language therapy clinicians. As I asked around I found an enormous disparity in the services that speech and language therapy clinicians were providing across different trusts. I had previously written a book on dementia, and had included a chapter on assessments of decision-making. At this stage some of the only research related to communication and decision-making had come from Talking Mats. This had demonstrated that using the talking mats tools can support families and caregivers in conversations with their loved ones when discussing decisions to be made. They found that conversation enabled people in understanding, retaining and expressing themselves in decision-making discussions.

Following a particular stimulating discussion with the publishers at J&R press, they invited me to submit a book proposal on this topic. As I was developing this idea I found the topic of mental capacity was raised more and more often at study days and seminars I attended. At these study days I started linking in with more like minded speech and language therapists such as Mark Jayes, Hannah Luff and Claire Devereux. These were clinicians who all agreed on the diversity of our potential role in supporting our patients around mental capacity issues. These common interests enabled a collaboration. Our book is now published.

Through these connections I became aware of other work being done; Mark Jayes holds a NIHR doctoral fellowship award and is conducting research in the development of a communication and capacity assessment tool kit. Claire Devereux is the chair of the Southern Psychiatry of Old Age Clinical Excellence Network, together we have held a workshop with the clinical specialists where we developed a consensus document on role of the speech and language therapist in capacity assessment. This is to be published in Bulletin magazine later this year. Hannah Luff is a clinical lead speech and language therapist at South London and the Maudsley NHS Trust and is currently a member of the review panel looking at the NICE SCIE dementia guidelines.

The wonders and value of networking never ceases to delight, enthuse and inspire me! And you can purchase our book at the following website (there is currently a discount rate until 21^st February):

http://www.jr-press.co.uk/dealing-capacity-legal-issues.html

You can follow me on my blog https://annavolkmersbigphdadventure.wordpress.com/ or on twitter @volkmer_anna