People with Learning Disabilities

Baroness Lane-Fox of Soho Excerpts

Thursday 6th June 2019 Lords Chamber

[Baroness Lane-Fox of Soho (CB)]

My Lords, I thank the noble Baroness, Lady Thornton, and I am delighted to follow the noble Lord, Lord Hunt. I pick up two words that both of them used in their remarks. The noble Baroness talked about the “outdated” system and the noble Lord about the need for a completely “new” service. As someone who comes from the world of innovation and new service design, I would like to talk about how very deeply I believe that better use of technology can help both people in communities and those who need to be in a hospital environment.

The potential for technology in this arena is breath-taking. I have seen examples of people with severe mental health challenges using virtual reality technologies to conquer profound issues of schizophrenia and learn how to interact with people who they were unable to share a room with before. Mencap did a fantastic study with people who had extreme mental health challenges, helping them to see what it was like to walk down the street. One incarnation of that was to go into a voting booth, so that they did not feel overwhelmed by that environment. These are not complicated technologies and they are available now. They can help people to live lives that all of us take for granted, if we are not faced with such challenges.

I argue that there is a lack of leadership, but also that we should not just use technology for technology’s sake. We need to use technology hand-in-hand with human solutions, led by the users of these services. I am a proud patron of AbilityNet, which provides assisted technology to people with both physical and mental challenges. One thing it does is provide volunteers to help people with the technology that is already available to them in their homes. The examples of people’s lives being made considerably better with a relatively small amount of free help are quite remarkable. We should bear in mind that this is a very small charity with a small network of volunteers, yet it has a huge impact on the constituents it serves.

I met a woman who had pretty much no contact with any of her family around the world. She was extremely isolated. She had been given, as often happens, a bunch of expensive kit by somebody, but it sat in the corner and she was actively frightened of using it. An AbilityNet volunteer came to show her how to turn on the computer, how not to be frightened of it, how to make sure that she was in charge of it and not the other way round, and to assure her that it would not listen to everything that she said—I hope that that was true. She could then connect to the worlds that she wanted to be connected to. She had family in Canada, and the technology prevented her needing extra support in the week because she was able to do a little more for herself. Everyone was a winner. Local services had less hassle to get to her every day because she was able to have that point of connection with someone from her family in another country.

I also met a wonderful man who was completely blind and who had been given a piece of assisted technology that he was frightened of. Again, with a relatively small amount of volunteering help, he was able to run his business using that technology.

I am not a complete Utopian: technology will not solve the profoundly disturbing cases that the noble Baroness, Lady Thornton, so articulately described. But if we are to reimagine a service fit for purpose in 2019—not 1819, as some of these horror stories suggest—we have to think about technology at the heart of how we design solutions. We should not make them only digital, but they must be able to help people run their lives by making use of the amazing ability that we now have in 2019.

I am also chancellor of the Open University. As many noble Lords will know, we have one of the largest constituent groups of disabled learners in the country. That is partly because of the OU’s long history of adaptive technologies and assisted technologies, and the extremely competent team of people who build brilliant learning technologies for people with complex needs. I am often in tears as I stand on the stage during degree ceremonies, when I meet people who put us all to shame. They have not only faced massive learning difficulties, both mental and physical, but may have suffered a bereavement, may not have a carer or may have been working a job at the same time—hard to believe, but true—and have completed a degree. I give thanks for the Open University and its incredibly robust network and systems that provide an outlet for people who want to continue with their education, at whatever stage of their lives. I urge the Government to think about how to reinforce those institutions—the big ones such as the Open University and the small ones such as AbilityNet—that do a very valuable job in communities. They must be a core part of how we reimagine services in the future.

We should not, however, overcomplicate some of the needs if we are designing a service from scratch. In my mind, it comes down to three important things: good infrastructure, good skills and investment. Good infrastructure is often overlooked. I did some work for Jeremy Hunt when he was Secretary of State for Health, looking at innovation in the NHS. I do not think that he was very pleased with me when I suggested that the biggest innovation would be to provide high-quality wi-fi across all of the estate. Thankfully, that is happening, but not quickly enough. Good quality wi-fi really does transform patients’, carers’ and staff’s experience of technology in hospitals—think how our own lives were transformed in this Chamber when it was no longer a patchy reality for us here.

Secondly, many noble Lords will know that I have long worked on the issue of skills, but far too many people are still not given access to training and skills at whatever point in their lives. It is not just the person who suffers but their carers and the people looking after them. When I spent far too long in hospital, many of the nurses and doctors had no idea about technology. They were given no training or education on how to use it. How are we expected to equip ourselves for the modern age if we do not know how to use the stuff that is available to us? Skills is a very important piece of the puzzle.

Finally, on investment, I am often ashamed when I look at the venture capital commitments from the sectors that I am lucky enough to work in. Too little money goes to inclusive technologies and creative use of technology for people who are perhaps the hardest to reach in our communities. It is imperative that we demand more of the sector, and that the Government lead and show examples of what is possible. Let us not forget that the touch screen was only invented for people who had difficulty moving their hands, and many other amazing inventions came about because of the needs of some of the furthest to reach in society. I believe very deeply that if you build for the furthest, you actually do a great service for the vast majority of people. These are not people on the outlying extremes of our society; they can help us learn more about ourselves as well. It is fundamental to inclusive design, and we need more investment from the sector. There are good examples in London of people who are trying to put investment in. Atomico Angels is a small fund that has been set up, and some great stuff is happening with LocalGlobe, Zinc and others, but it is not enough. The scale is dwarfed compared with what is going into other parts of the technology sector and compared with where it should be.

I end by painting a picture of a happy place. We started with the noble Baroness, Lady Thornton, describing some very broken places, but I am lucky enough to know Dame Stephanie Shirley, an amazing technology entrepreneur from the late 1960s and 1970s, who has spent the later part of her career as an extraordinary philanthropist. She had a child who died of an extremely serious form of autism, and she has built a school, Prior’s Court, for children who suffer from this very severe autism, many of whom cannot speak or look after themselves. If anyone needs an example of how we can design for the future, I urge them to visit Prior’s Court. It should be upheld by the Government as an example of what is possible. She has robots talking to the children, because sometimes it is easier for them to communicate with something that does not have all the complicated cues that we have on our faces, and she has art and screens. It is not a technology-led place: it just embeds the best of technology. I salute Prior’s Court. Let us forget the past of Winterbourne Abbas and use Prior’s Court as an example of the future.