Contribution
My Lords, I want to bring your Lordships back from Wales to the speech, language and communication issues that affect everybody equally right across the United Kingdom. My amendments in this group, Amendments 167 and 546, seek to ensure that people who have serious speech, language and communication issues have an element of protection in the Bill and that they are supported in accordance with best practice. I remind noble Lords of my interest as chief executive of Cerebral Palsy Scotland. I have drawn on my organisation’s experience of supporting people with serious communication issues to inform my remarks.
Amendment 167 is a probing amendment designed to explore the specifics of what is meant by seeking assistance. This is not about the requirement to self-administer, which, if we get to it, will be explored later in Clause 25. This section is to do with the preliminary conversation. Amendment 546 would simply add those with communication and speech difficulties to the list of those who may be provided with an independent advocate in Clause 22.
The Bill currently sets out in Clause 5(4):
“If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters”.
I have taken that to cover those for whom English is not their first language, but I am not convinced that it covers a situation where someone has to communicate using augmentative and alternative communication, known as AAC. I shall me explain why I have specific concerns in this area.
This population can be divided into those who have moved on to AAC because of disease progression—for example, those with neurological conditions such as MND or Parkinson’s—and those who have always required assisted communication, those with complex cerebral palsy or severe autism. This population may be deemed to understand English, but they have never been able to speak, so AAC is their de facto first language. Experience illustrates time and again how those who experience communication difficulties, especially those for whom AAC is their first language, struggle to deal with difficult conversations. At Cerebral Palsy Scotland, we work with people with very complex needs, including those with learning disabilities, who need symbols to support understanding and communication. This group will express themselves in a way that is not typical, as they will be restricted to a limited vocabulary.
There are tools—Amendment 172 from the noble Baroness, Lady Grey-Thompson, specifies Makaton—but there are others, such as Talking Mats, that are designed to support big decision-making, and these are currently used to understand a person’s desire to, say, live independently or express what type of care they wish to receive. However, these methods of communication need to be facilitated by a professional who will suggest options: option A or option B. The individual themselves does not have free choice of the words that they can select. Now put that individual in a context where they have been diagnosed with a terminal disease and they meet all the criteria of the Bill yet they might not be privy to the right vocabulary or the right specialist professional support. How can we be confident that they have fully understood the process and that it is their free and settled choice to die?
Much of our communication with people who have complex communication needs is co-constructed. Tools such as Talking Mats or Makaton rely on a professional making the initial choices and making assumptions. How many times have we seen carers or family members talk for a person because they know them best and they know what they are trying to say? Again, I ask: in these situations, how can we be confident that this is truly the settled opinion of the person who is being talked over? Amendments 322, 322A and 406 from the noble Baroness, Lady Grey-Thompson, speak about communication in accordance with a person’s needs and wishes, providing translation in a format of the person’s choice and recording, if communication needs have been identified, how they have been met. I support all these amendments.
People who do not have a learning disability and may come to use AAC because of their disease progression —or, like many adults with cerebral palsy whom we support, they may be literate and use devices that use typing and predictive text—may have the vocabulary to make their views known, but only if they are given the time, space and support to do so. I do not know if any noble Lords have ever tried to communicate through an AAC device. I have, and often you have to scan through a word at a time, picking up which row you choose, and then you go down and choose the word. It requires incredible skill and concentration, and it is exhausting. You have to really concentrate because otherwise your eyes go off and you do not say what you want to. It is essential to allow sufficient time within the appointment to retrieve longer messages, and fatigue and frustration are common.