Baroness Grey-Thompson (CB)

My Lords, I rise to speak to Amendment 119 in my name and that of my noble friend Baroness Hollins. This seeks to insert a new clause to provide a mental capacity assessment for people with learning difficulties, and to have a clearer view of who would be able to carry out that assessment. The noble and learned Lord said last week that he would respond on this when we got to Clause 22. As we are discussing Clause 22 stand part in this group of amendments, I assume may he reply to me. I also wrote to the noble and learned Lord this week with a number of concerns; I will not read the letter out now, because it raises a few different issues. One of them was on the advocate. I understand that many noble Lords will not have seen that letter, so I will publish it. Some of the issues that I am concerned about in this clause are around how important advocates are, and the safeguarding that they can provide. In another place, Daniel Francis MP tried to ensure that advocates were there as part of the decision, but that was voted down as an amendment. What we have now is something that I believe is somewhat weaker, because now an advocate has to be there only if instructed. It does not make it compulsory; it is optional. This seems to be a particular paradox, because somebody might not understand what they are turning down. I am not sure if that was what was intended by the noble and learned Lord. In 2014, NICE held a public consultation to assess plans for new medical treatments to be given only to those deemed a benefit to society. Disabled people were not included in that. I wonder whether it was because NICE did not expect the response around disability to be terribly positive. In the equality impact assessment for the Bill, table 27 seems to suggest that there could be a saving to the NHS of £2,323 for every person with a learning disability who accesses assisted suicide. Will the noble and learned Lord confirm whether he reads that table in the same way that I do? Giving doctors the ability and the option to raise this with patients presents a serious risk of medical coercion. Negative judgments are made by professionals around the quality of deaf and disabled people’s lives all too frequently, as we saw with the “do not attempt resuscitation” notices that were put on disabled people during the pandemic without their permission or knowledge. Written evidence submitted for the Bill by the All-Party Group on Down Syndrome said that most doctors “do not receive adequate training in learning disabilities and Down syndrome” and could “misjudge capacity due to biases or lack of experience”, which could lead to “undue exclusion or unjustified inclusion in … discussions”. We know that prenatal screening for Down syndrome and the pressure to terminate that comes after any diagnosis demonstrate the pervasive societal attitude that undervalues the lives of disabled people. Studies from 2025 show that people with learning disabilities generally exhibit a high level of satisfaction with their lives, but that does not sit with the non-disabled peoples’ perception of those lives. I spoke recently to a nurse who works with people with learning disabilities who told me about their highly suggestible nature, which is why we have to put a lot of trust in those who work with people with learning disabilities. The example I was given was just over what somebody has for an evening meal: it was the case of an individual who always repeats the last thing they were told. On something very simple, given option A or option B for an evening meal, they will always pick option B. Whether they like that meal or not, they will pick it because they are so suggestible. This leads me to conclude that we have a failure to understand the reality of the lives of people with learning disabilities. PubMed published an article in 2025 that looked at the Netherlands and reviewed 39 cases of those who had accessed the assisted suicide service because of intellectual disabilities or autism spectrum disorders. In 24 cases, the disability was the major contributing factor in the decision to ask for and grant the service. In 21% of cases, the only causes of suffering described were factors directly associated with intellectual disability or autism. I am sure that many of us have been contacted by people who are really worried about the impact that this could have on their families. I am afraid that, from my experience of working with people with learning disabilities—although not to the extent of my noble friend Lady Hollins—I am also very concerned. Professor Irene Tuffrey-Wijne, a specialist in palliative care and the impact on people with learning disabilities, looked at studies in the Netherlands and at what is happening in the UK. She said that people with severe learning disabilities would not meet the criteria, but there is a real danger and risk for those with mild disability. In the UK, there is nothing in the proposed legislation to prevent a doctor raising the question and how it is offered. People with learning disabilities have internalised the message that they are not as important as others and are likely to hear the raising of the question as a suggestion that this might be the right thing to do. It becomes normalised and it becomes “when”, not “if”. If someone living with others who have similar issues has it offered and accepts it, then those others might say, “Well, what about the rest of us?” Those with severe learning disabilities cannot consider and weigh up the alternative. We know that health is not a level playing field for people with learning disabilities. Disabled people frequently have to fight to get the same treatment for health issues as non-disabled people, so there are real worries in this. Mencap is concerned that the suggestion to someone of assisted dying might be construed by them as the right course, which would constitute “undue influence”. Then, of course, there is the issue of medical arrogance. Some doctors think they know best and could easily talk a person with a learning disability into doing what they wanted. I accept that many doctors want to get it right—they are well-meaning—but they can be wrong. They choose what they tell someone, and it is always difficult to convey bad news about a condition. The capacity to assess that is really important. Autism and learning disability are very common, so this poses a significant risk to this population. The elderly are also suggestible and might be similarly disadvantaged. I leave the last words in my contribution this afternoon to Tommy Jessop. Tommy will be well-known to many of us and has visited Parliament many times. Tommy has Down syndrome. He said there need to be “rules to keep us safe, but that has not happened … our lives are worth living … Please protect us”, and, “we are not collateral damage”. This is now an opportunity for the noble and learned Lord to actually say that people with learning disabilities are not collateral damage.