I recently spoke in Baroness Findlay’s debate in the @ukhouseof lords about end of life care in the UK. She is chair of Dying Matters and works tirelessly in palliative care. I wanted to talk about what @doteveryoneuk worked on last year. You can see more details of our work here https://projects.doteveryone.org.uk/improvingcare/index.html
Here is my speech from Hansard.
“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.”