End of Life Care

Baroness Lane-Fox of Soho Excerpts

Tuesday 14th March 2017 Lords Chamber

[Baroness Lane-Fox of Soho (CB)]

My Lords, I too pay tribute to the noble Baroness, Lady Finlay, and I look forward to some exciting debates about digital and dying matters.

Doteveryone, the charity that I founded to make the internet work for everyone, spent six months last year looking at how technology can help improve the care of people with life-limiting conditions. Even in the complexity that inevitably plagues the end of life, dramatic improvements can be made to people’s lives through relatively simple use of digital, thereby—to answer the challenge from the noble Lord, Lord Judd—allowing for more time to live and more time for human care.

I shall share three of Doteveryone’s recommendations. First, on the problem of NHS legacy technology, as many noble Lords will know, each trust is supported by hundreds of systems. On average, each hospital has over 600 IT systems that may or may not usefully speak to each other. Much communication still relies on fax, and a small number of big suppliers dominate essential services such as booking appointments. So the gap between innovation and legacy continues to grow, leaving patients and professionals to work with technology that is not fit for purpose.

Resourceful people, however, always find ways round these problems. Doctors message each other using WhatsApp, and I have found hundreds of people who have commissioned apps to solve small bits of the clinical problems. Doteveryone’s research has shown that carers and people with multiple long-term conditions therefore become full-time administrators, supporting the NHS with unpaid work to manage these information flows, appointment bookings and all the other things that follow from bad IT. This is entirely to the detriment of healthcare outcomes. The burden falls disproportionately on those who can least afford it.

Doteveryone built a prototype for a collaborative healthcare record that allows people, carers and clinicians to see the same data and information. This was not a tortuous project: it was a quick, responsive and cheap one based on hundreds of research interviews with people at home and in care homes, hospices and hospitals. There are, however, not enough of these ideas and services out there, and not enough that are being allowed to scale through the system.

As one person we met—Joe, who is living with severe heart conditions—told us:

“I panic when I am listening to doctors and I don’t hear it all … I need a better way to record our conversations or make sure I always have someone with me”.


There can always be someone with you: they just do not always have to be a person.

Our second recommendation was around wi-fi. We need beautifully designed wi-fi in care homes. I use that word “beautiful” carefully. Some 70% of care homes have no wi-fi at all; and 80% of people living in care homes say that they are scared to leave their room. How brilliant would it be if by having better wi-fi across the estate, they could chat to someone just down the corridor, or even better perhaps, back home or even in another country? Sometimes, simple tech solutions can provide imaginative leaps for problems that people are not seeing.

The overarching point of all this is that there is so much opportunity to implement technology that enables people facing the most difficult of times with more hope, more joy and, crucially, more time. Infrastructure and services are vital, but so is experience, imagination and skills within the system.

The third recommendation we made is that we must make digital skills a priority or we will have no chance of meeting the mammoth social challenge we face. This is not about learning to code but about a digital understanding that enables you to make better decisions.

I was at my grandmother’s funeral yesterday. She was lucky: she lived until 96 with plenty of family and support around her. But even she faced 12 months of hideous loneliness when my grandfather died. Despite being able to stay in her own home until the last few weeks, she was desperately unhappy in the very well-run local care home she moved into. Along with quantities of cheese, the only thing she took pleasure in was seeing videos of her grandchildren and great-grandchildren on my iPad. We recorded messages from her and to her, and her face would light up. This is not a complex technical solution or a crazy innovation. It is a humane and obvious use of digital.

I urge the Minister to look at older people with multiple conditions as superusers of the NHS. Improving service delivery for them at the end of life will lay the foundations of an improved service for everyone. End-of-life care is not a specialist clinical issue but a building block for a better NHS.

Mental Health: Young People

Baroness Lane-Fox of Soho Excerpts

Thursday 9th February 2017 Grand Committee

[Baroness Lane-Fox of Soho (CB)]

My Lords, I too thank the noble Baroness, Lady Massey, for her leadership on this issue.

There is no greater advocate for the change that the internet has enabled than me. I see its benefits on a daily basis and have worked my whole working life within the sector. However, even I do not believe that we have yet understood, and developed the frameworks to help our children deal with, both the benefits and the destruction of this incredible revolution.

There is so much to be positive about. I see my nephews playing multiplayer games and building incredible things, connected to children they have never met before across the world. I see my godchildren playing chess in complicated ways with players they have never seen before in countries all over the world. However, it is hard to ignore some of the data and studies that also show how this technology is affecting children in a negative way. The BBC says that 62% of children on its websites are looking for mental health-related data. I look at this issue from a different angle: the number of children who are using some of the networks that were never intended for them. I declare an interest as a director of Twitter. Although we do not have so many children on our network, Facebook says that 52% of eight year-olds sign up to Facebook, despite an age limit of 14. I am not against social networks—quite the opposite—but there are reasons why they are age-appropriate.

The positives of this amazing technology must be countered by an understanding from parents and teachers about what their children are really doing. I had a small absence from your Lordships’ House as I now have seven-month-old identical twin boys, and this issue is front and centre as they see me with my iPhone or my iPad—probably too much—and immediately their faces turn towards it. I find this world hard to navigate; how it must be if you are living in one of the 1 million families in this country who do not have basic digital skills, I dread to think, let alone if you are a teacher who may themselves be struggling with understanding this complex new world, yet you are responsible for a class of children who may be at varying degrees of usage and attention in the classroom.

I feel strongly that we must create new ways of thinking about this problem. It starts with schools but it must also be led by parents. I pay tribute to my noble friend Lady Kidron who has done a lot of work on children and their rights, but we need to go further. I am keen to understand how we could use more creative thinking and I urge the Minister to consider this. Some amazing people around the world are looking at the issue, and I cite Danah Boyd, who is based at Stanford, as a world-leading expert. I would love to see how parents can be given comfort and reassurance in these uncertain times so as to make sure that the benefits continue to outweigh some of the dangers.

Health

Baroness Lane-Fox of Soho Excerpts

Thursday 26th November 2015 Lords Chamber

[Baroness Lane-Fox of Soho (CB)]

My Lords, I, too, thank the noble Lord for securing this debate. I was reflecting on whether he is happy or sad that he no longer runs the great NHS, for it seems to me that in many ways there has been no greater time of excitement, with innovations and improvements. At the same time—my goodness me—we need them more than ever. Perhaps the greatest of those innovations and improvements is the internet. I would call it the organising principle of our age, yet there is by no means the same organisation around it in our health service.

You can perhaps keep on your phone in your pocket as much health information as your GP has about you—perhaps even more. When I describe the House of Lords to people outside it, I often put some of the longevity in this Chamber down to the fact that noble Lords walk around so much along the endless corridors. I would love to be able to give all noble Lords a Jawbone UP or other device to wear around their wrists to test my philosophy. I have—although I do not have it with me today—a bracelet that nudges me every now and then to help my nerves by moving and wriggling. There are endless devices, of which I am sure some noble Lords are aware, that help people to read practically every single vital life sign. This is an exciting time: it can only be a good thing to have more information, not less.

I have worked with two small UK companies. One, called Sleepio, is helping to address the enormous challenge of insomnia. It has an app—a device that it uses to help people talk about their health after having had a bad night’s sleep, and to give tips about how to get a better one. There has been a more than 50% improvement in people’s sleep, and a 100% improvement in respect of the number of sleep drugs people are taking. Another small company, HealthUnlocked, helps people to find patient groups with diseases like their own. One of its most important and useful groups is concerned with diabetes. The people using it say that they have experienced an improvement in quality of life with the disease of some 60%, and a 30% reduction in the number of drugs they use. These are profound and important shifts, all enabled by the internet.

However, I must wave two enormous red banners about the huge risks that I see coming over the horizon. The first is one that I mention not out of any parochialism or jingoism: we would be mistaken to think that it is not a very small area of a very small bit of the west coast of America that is likely to dominate the health creation of the future. Google, Facebook and the other big US platforms have designs on our health. Google, even in its failed attempt to build health records, took 30 million individuals’ health records in a very short space of time. This is an enormous issue that we need to debate and think about much more carefully. The force for good is hugely powerful, but the possibility that our enormously valuable NHS will lose ground to these incredibly well-invested organisations, which understand technology at their very core, is real. If we are to have a truly health-creating society, deploying all the tools in our armoury, we must think very carefully about enabling the NHS to “compete”—in the right way—with some of these giants. For me, the potential access to the data that our great NHS has, and the inclusivity and universality of those data, is one of our greatest weapons, but it would be a mistake to imagine that we are anywhere near that right now.

My second red flag concerns digital skills and inclusion. I declare an interest as chair of Go ON UK, a charity that I set up to build digital skills in the UK. There are 12 million adults in this country who cannot do basic things online, yet we know that the internet is one of the most powerful tools in combating the loneliness that I am delighted to say many people in this Chamber have already mentioned.

I end with a story from a woman I met in Birmingham, who told me that the internet has quite literally saved her life. Even I, prone to hyperbole, was sceptical, but she described how she was one of the 1.5 million people over 65 who see no one in a week. She had learnt how to use social media and had connected to family that she had not seen in many years. She told me that it had stopped her wanting to jump off the building where she lived. If that is not health creation, I do not know what is.