Baroness Grey-Thompson (CB)

My Lords, I have Amendments 172, 322, 322A and 406 in this group, which address the requirements of accessibility, BSL and Braille. In speaking to her amendments, the noble Baroness, Lady Fraser of Craigmaddie, raised a number of issues. While I tabled all my amendments before the start of Committee, her speech showed some of the areas where there is still some cause for concern—certainly, around things such as programmable text and the way that it is used. My noble friend Lady Campbell of Surbiton is not able to be in her place today, but she raised the issues faced by Lucinda Ritchie, who, as a woman who used communication aids, had to go to a care home. The nurses were not able to set up the communication aids, and she, in essence, became voiceless. As the debate today has highlighted—in the words of the noble Baroness, Lady Nicholson—if this Chamber cannot provide reasonable adjustments for Members, that reflects a bigger problem that exists outside in terms of whether people can really understand what is going on. The Bill takes its foundation from the Mental Capacity Act. We have to get to grips with whether someone can understand, retain and use information. I am against the process of assisted suicide being called treatment. If we cannot communicate with people properly, the individual might be confused about what they are being told. In New Zealand, as has already been raised, people have to ring a phone number. Dr Jeanne Snelling said that it is completely inappropriate. A deaf person cannot ring a phone number, so they might not be able to access the service that they want. I have amendments on reporting mechanisms, but I am keen to understand what issues also might be highlighted from these discussions and whether one impairment group is disproportionately affected in accessing this service. That is why Amendment 406 says that we need to record when people’s accessibility needs are not met. Clause 39(1)(d) gives a power to the Secretary of State to introduce codes. I hope that the breadth and depth of debate in this group will inform that. The National Down Syndrome Policy Group, as already mentioned, said that it is essential that people are able to understand what is going on, but the Easyread document from the NHS on the Mental Capacity Act is 28 pages long and is complicated. It is difficult to get true consent when we know that people with Down syndrome are already suggestible and potentially eager to please others. We know that people with learning disabilities and deaf people already have lower health outcomes than others. There was the tragic case of Adrian Poulton, a man with Down syndrome and dementia, who starved to death in a British hospital because the doctors put “nil by mouth” above his bed. He was not able to communicate, and the staff were not listening when he asked for food. They just looked at the “nil by mouth” and assumed that he did not know what he was talking about. The equality impact assessment has identified that there are some areas of concern. It should be noted, too, that British Sign Language is not a direct translation of English. We missed a trick, when we were doing that legislation, in not going into greater depth with it, but we have to be clear about how we provide appropriate translation. The noble Baroness, Lady Fraser, raised speaking difficulties. I met someone for the first time recently. We had no issues communicating at all. It was only after about 10 minutes that they mentioned to me that they had had a stroke, and they felt that they were struggling to speak and find the right words. You could easily make an assumption that someone’s communication skills are very good, when indeed they are not. One of the issues is that we do not have enough people who are able to use British Sign Language. I accept that Makaton is not a language and should in no way be confused with BSL, but about 100,000 people use it as a communication aid. There are 1,200 licensed tutors, and they train about 20,000 people annually. I should have probably made it clear in the amendment that Makaton and BSL are not interchangeable. In a different context, we certainly should not replace Québécois with French, or Swiss German with German. We talked earlier about Wales. I am Welsh, and I think it is important that we discuss these issues. I grew up in a semi-fluent household, and my mother spoke very colloquial Welsh. Depending on who speaks to me, I can understand quite a lot, but what one takes from a conversation can be very different. That is why I am concerned about this group of amendments. My noble friend Lady O’Loan raised the issue of translation. In 2017, I did a piece of work for the then Government on duty of care in sport, and the word “safeguarding” is not translatable into other languages. Even where it is translatable, its meaning can be very different, and we need to be concerned by that. A survey by the Royal National Institute for Deaf People found that 77% of BSL users had difficulty communicating with hospital staff, and that 33% left consultations with their family doctor feeling unsure about instructions or taking the correct doses of medication. We have seen in the media that a deaf man was wrongly told that he had HIV after the hospital failed to provide an interpreter. There is the case of Derlyn Roberts, an American woman who famously pretended to be a sign language interpreter at a high-profile news conference in Tampa, Florida, where the police were announcing the arrest of a serial killer. She could not sign at all, and experts described her interpretation as gibberish. Members of the deaf community were very upset, and the deaf mother of one of the victims of the serial killer was present and was relying on the interpretation. Just think how distressing that is. However, there are good examples. At the St Helena Hospice, people who prefer to use BSL can communicate with nurses by clicking the BSL live button. Deaf patients or visitors can choose to use that service, so it is possible to provide appropriate translation. We should not presume that the person with the communication barrier is the patient. It might be that the doctor has some challenges in translating, understanding or, indeed, communicating. I am delighted to learn that doctors are now getting much better training in how to communicate with patients, but this could be improved. The GMC guidance says that steps must be taken to meet the needs of individuals, but each stage of the process relies on an open choice. If discussions are not accessible because of a language or communication barrier, any perceived safeguards in the Bill are simply worthless. The noble and learned Lord has said many times that everyone should have equal access to the process, but for deaf or disabled people and for those who have a combination of impairments, it is really important that they are given genuinely equal access to the process and that they understand every step of the pathway.