A better care system is possible.
Social care need not be something for individuals to fear and a burden for society to bear. It can be a vital part of improving lives, increasing wellbeing and productivity.
The UK’s social care crisis takes place amid unprecedented technological change, transforming the homes and communities of the people who need to be cared for; the jobs of the people who care for them; and the way decisions are made about the entire health and social care ecosystem.
Decision makers must recognise this profound change and – in place of ill-founded tech dreams or ad hoc digital sticking plasters – create a robust care innovation strategy that accounts for it.
This report sets out how technology can support a sustainable, effective and fair social care system. It does not prescribe tech solutions but describes the foundations needed for any technology to be responsibly and effectively deployed, specifically:
- the data needed to build and measure technology focused on wellbeing;
- the skills required to use tech to care;
- the culture that will enable people to adopt and shape technology to their needs.
These recommendations don’t require more money to be thrown at an already bankrupt system. Instead they show how to strengthen the care system so that future investments in technologies make meaningful change.
The investment required now is the courage and imagination to see beyond immediate crises and build a social care system fit for the age of automation.
Better Data for Better Care
NHSX should deliver a new national data strategy for social care with metrics for the wellbeing and productivity of individuals, families and communities and so incentivise the development of technologies for long term benefits.
Better Skills for Better Care
The Department of Health and Social Care should support the founding of a Royal College for Carers to professionalise the care workforce so they can effectively use technology to augment their vital skills of empathy, creativity and social intelligence.
A Better Culture for Better Care
NHSX should fund vanguard Enablement Panels that show what good looks like and get health and care technology working on the ground. Run by and for disabled people, carers and families, these panels will push back against an ageist culture, with favouritism to able bodied people, and use new technologies and services to improve access to the economy and community.
Better Data for Better Care
Although the care system collects vast amounts of data, current metrics focus on costs and processes and not outcomes for the individual, family or community.
How technology is used in social care in the future will be shaped by the data collected on needs and challenges, the targets services need to hit, and metrics by which services are evaluated. Data may be used to train artificial intelligences on how to interact with people or how to predict and prevent problems.
Policymakers, commissioners and staff will then judge the effectiveness of a technology based on the evidence of its impact. How has the service or situations changed over time? Has an individual’s health improved or declined? Have their needs escalated? Have national waiting lists lengthened, and have costs risen?
What is measured matters. And better measurements can make a better care system.
The sector already does a lot of measuring — and those measurements determine much of what happens within the social care system.
Care professionals and providers told us of the increasing burden and stress of form filling. This uses up precious time that could be spent looking after people. It contributes to low staff morale and burnout. And it also forces carers to do their job to meet the demands of the metrics — which often focus on prescriptive process — as opposed to supporting the overall wellbeing of the person they care for.
Research participants told us of autistic young adults who hate crowds being taken out of the home to sit in a noisy McDonalds so they could tick an “engaging with the community” box. Others told us that in care homes, the fact that a person had been served food was recorded, but not whether or not they had eaten or enjoyed it.
In a system cut to the bone, what’s measured is also what’s funded. People working at every level of social care, from front line professionals through to managers, founders and CEOs all described pressure to cut back on everything that was not necessary to hit minimum statutory requirements.
People do wonderful things for the people they care for, they give up far more than their paid time. Responsible providers take on the burden of the cost of additional services – thinking not just about safe care, but about the experience of the person receiving care. But is that fully funded? Absolutely no. – Paul Hayes, Chief Commercial Officer, Four Seasons Care
Working with the data
Despite the time and effort spent filling in paperwork, much of the information collected ends up gathering dust, kept on paper in filing cabinets, and referred to infrequently for inspections or review.
On average [care workers] spend about one and a half hours per shift on paperwork. But it’s so complicated to fill in that there’s rarely time to evaluate. It’s all tracking, with no checking it’s actually working. – Morten Mathiesen from Digital Care Planning Service, Sekoia
When care providers and innovators do try to use it, they’re often disappointed.
I looked a lot at what different regions and different approaches were achieving and what impact those had on care, but there’s nothing – no real data to use. No baseline information. We can only compare against the data we collect when we onboard a client. –Jonny Bottomley, CEO of Home Care Provider, Edyn Care
Organisations that want to use data successfully have to go above and beyond national requirements, building their own databases, methodologies and training methods. For example Dimensions, a provider of support for adults with learning difficulties and autism, worked with the Tizard Centre at Kent University to develop digital tools and the processes around them. But they had to start from scratch.
Our Activate model starts with a Possibilities Analysis, using eight ‘domains’ connected to a good life (health, activities and skills development, and relationships, etc) to help people figure out where they are in their lives and where they want to be. Next we use a systematic, software-based method of goal setting and monitoring to help people take steps towards outcomes that matter to them. Activate is about people not technology; the thoughtful application of great tech enables the meaningful work. – Nick Barrett, Head of Behaviour Support, Dimensions
The current data landscape also does not serve the needs of those planning and commissioning services. Metrics are analysed in siloes and incentivise short term decisions, failing to account for how changes to one service will affect others.
Local authorities’ data … is almost never aggregated to provide data about what people want, whether they are getting it, what is working and what the gaps are. – Workshop participant
The greatest data challenge in social care is the amount of basic information that is simply missing.
In spite of rhetoric about investment in digitisation, and Secretary of State Matt Hancock’s call for the UK to be a “world leader in data driven health care”, vital care metrics have been cut in recent years.
Since the Referrals, Assessments and Packages of Care Service was removed in 2014-15, there is now no centrally collected information about the amount of care hours provided across local areas in England. There is also no centrally collected data on waiting times for local authority care, as this was scrapped in 2010, nor is there any enforced maximum waiting time.
There’s no way of knowing the total level of funding in local areas in England because the boundaries of health provision and social care provision don’t match up. This also makes it impossible to analyse how investment and cuts in one service affect the performance of another. And while information is collected about the overall satisfaction of people who receive local authority care, there’s no data on those who are turned away, or the feelings of carers, the wider community and the general public.
These are just some of the gaps. We describe the scale of missing data is described in more detail in our report, Better Evidence for Better Care, which recommends 33 actions to address the issue.
Against this backdrop, commissioners and providers are making critical decisions about the use of technology to support social care, armed with little more than marketing hype or political pressure. With so little information on the wellbeing of communities, there is little incentive for long-term, joined up thinking that can build capacity and reduce future needs.
Recommendation: Measure what matters
Better data is needed for a better care system.
That doesn’t necessarily mean more data. But it does mean more useful data. This is data that measures what matters – the outcomes for individuals, families and communities and that looks across the whole system over the long term. It also means training and resources to understand and use that data from the front line through to senior management.
This kind of data will help innovators to build technology that works for more people, more of the time and help decision makers plan strategically and know if they are making people’s lives better.
Doteveryone recommends the Department of Health and Social Care supports a new national data strategy for social care. This would sit within a new, well funded social care division within NHSX. It should measure the wellbeing and productivity of individuals, families and communities and incentivise the creation and use of technologies for long term benefits. To do this the department should:
- Conduct research to understand individual and community wellbeing to incentivise the market to deliver real, long term value. This will draw on the insights of the ONS, the OECD Well-being and Progress framework, the European Commission’s Active Aging Index and the Wellbeing Economy Alliance as well as the experience of the NHS health as a social movement projects and other available resources.
- Hold a broad, participatory national conversation about how to define wellbeing and what metrics should be included. This must involve people in all parts of the care system.
- Collaborate with Councils, the Care Quality Commission, and the Office for National Statistics to include new metrics in surveys and evaluations.
Better Skills for Better Care
More technology on the front line will mean more tech support and more complex decision making on the front line and carers will need the skills to do this.
Technology cannot save the care system on its own.
Technology can’t work if there isn’t a human around to install it, log in, input data for a profile and features, to reset it if it crashes, notice that it’s run out of battery, to explain how to use it, or to ensure it fits users’ abilities and needs.
My aunt has a personal alarm that’s supposed to mean she can get help in an emergency, but she also has dementia. Her daughter asked “what do you think that does?” She thought for a long while and said “I think I press it when I want a coffee –Research participant
Many of the tasks involved in caring are extremely hard for machines: lifting and holding, brushing hair and putting on socks. Emotional intelligence, contextual awareness, creative compassionate problem solving, often under pressure, in messy unpredictable environments are some of the most challenging issues for AI.
As a mixture of “managing others”, “applying expertise” and “unpredictable physical work” social care was rated as one of the least automatable jobs in McKinsey’s 2016 report Where machines could replace humans—and where they can’t (yet), and again in 2017 as “unpredictable” and so “technically difficult to automate.”
Amidst media excitement over care robots, even reviews which discuss the cutting edge in route-finding, grasping, talking and problem solving admit “current assistive technologies are still a far cry from a future where our meals cooked for us and all household our chores are completed for us.”
A better care system will depend on having people with the skills to work with technology.
Avoiding a widget workforce
Currently care providers are incentivised to use technology to cut staff: there’s a global workforce shortage that’s set to increase and to become more acute for the UK in particular due to Brexit. Staff make up a high proportion of care costs – typically around 52% of care home costs, rising to 67% if using agency staff. This has led many providers to invest in technologies that get their staff to hit critical targets in as little time as possible, with increasingly detailed and regimented scheduling platforms and tracking systems.
When implemented well, staff management systems can have real value; some front line carers were delighted by a system that let them prove they had turned up to an appointment on time, and helped them to keep track of tasks on a hectic day. But done badly, they give no space for carers to respond with compassion and creativity to the unique challenges of each care appointment; calming someone who’s distressed, convincing a deeply confused person that their medication is safe, dressing someone during a flare-up of pain, or washing someone when the hot water on a pre-paid meter has run out.
They track your position with GPS, when you log in and out of every job by the second – they’ll ask why a task took this long today and a different length another day – when it’s always contextual – Karolina Gerlich, Frontline carer & CEO of the National Association of Care & Support Workers
The tracking means if I pop into the shop on my way to the client to get some milk so she can have tea that’s penalised. But it would make such a difference to her day – Home care professional participant
This “widgetisation” of the workforce — slicing the job of caring into prescribed tasks and not seeing the whole picture of a person’s needs — has drawn parallels with other safety critical industries, including aeronautic engineering:
As Boeing rushed to get the aircraft done, many of the employees described a compartmentalised approach, each focusing on a small part of the plane. The process left them without a complete view of a critical and ultimately dangerous system. (Nicas, J. 2019)
Taken to the point of absurdity in this way, technology doesn’t serve the interests of either the staff or the people they are caring for.
What technology and people can do together
Technology does have the potential to reduce costs and improve care if people have the skills and autonomy to make it work. Our research participants told us about smart homes that let them open doors and windows and move around their home safely as their mobility declined and allowing them to stay at home independently. Others said technology had given them access to services and work opportunities.
For some organisations technology has improved efficiency and transparency, or helped them support their workforce more effectively. In many cases platforms and devices have helped people connect and support one another. But achieving these results, scaling and improving on them relies on people being able to get tech to fit into complex, busy lives, to know if something’s gone wrong and fix it when it breaks.
The “Last Ten Centimetres”
The logistics industry is familiar with the “last mile problem”. Optimised supply chains are increasingly efficient at moving goods from factory to port to shipping container to lorry to national distribution hub to local warehouse. But the last part — navigating unfamiliar narrow streets to find an address and get a box into customers’ hands — remains unpredictable and challenging, and costs about a third of the total costs of delivery.
The health and social care system is becoming more tightly controlled, digitised, automated, and tracked. And it’s struggling with the “last ten centimetres”.
The “Last Ten Centimetres” — an idea conceived by our workshop participants — are often invisible to people who do not have lived experience of illness, disability or caring. To an able-bodied designer, getting Alexas in dozens of disabled peoples’ homes so they can use voice controls to set up reminders, switch on lights and open doors may seem like a finished job. But this doesn’t take into account users with conditions that affect their lungs and cannot raise their voice above a whisper. Nor does it consider people who’ve suffered a stroke or who have learning disabilities, and who may not be able to formulate questions in ways the AI understands. Users with dementia are often deeply distressed by an unfamiliar robotic voice reminding them to take medication, and people who come to rely on a smart home system for access and communication can be left in danger if a power cut, hack or missed payment interrupts the service.
The physical tourettes tics make it hard to hold things or press buttons but my vocal tics affect voice recognition. A computer scientist volunteered to work on it – I now have my own custom system that knows the difference between a tic and a command. It’s so useful, but it only works for me. – Jess Thom, theatre-maker and co-founder of Touretteshero
This “Last Ten Centimetres” is critical for both NHS and social care to realise the benefits of new technologies. If telecare appointments are to save GPs’ time, someone needs to set up the WiFi and make sure it’s working. If reminder SMS messages are to improve NHS appointment attendance, someone needs to make sure they are readable or that text-to-speech works. If robot-supported physiotherapy is to improve stroke rehab, someone needs to make sure the straps and grips are comfortable for different hands all affected by hugely varied pain, palsy or paralysis.
I’ve been given, I think, four commodes? No five. All with more features but none of them fit me. They won’t take the old ones away […] so my tiny flat is just full of all these useless things – Research participant
Crossing the “Last Ten Centimetres” requires combining the non-automatable skills of care professionals – emotional intelligence and empathy, contextual awareness and creativity – with basic technical skills. It also requires giving carers the time and resources to feed back their experiences into tech development, to be able to personalise technology, and to access technical support when things go wrong.
2025: A Future of Care
In our workshops we imagined a positive future, with empowered, trained staff who had the time and resources to listen to the people they support and work with them to identify problems and proactively find solutions. These ideas are explored in 2025: A Future of Care, a short film we developed with Superflux.19 In the film Pam, who has had a stroke, has a smart door system installed to keep her safe and help her manage visits from care workers and friends. When the system breaks down, a trained care professional and a local tech supporter – who has developed skills through managing her own assistive technology – work together to help Pam battle through bureaucracy and system resets. They solve the problem, develop their skills and form a friendship, so end up better equipped to tackle whatever problems come next.
The autonomy to care
But as well as skills, an innovative, tech-supported care sector depends on staff having the capacity and autonomy to act.
There is increasing evidence that this approach is cost-effective. In the Buurtzorg model, commonly used in the Netherlands, small self-managing teams of highly trained community nurses provide all of an individual’s care (rather than separately managing personal care, nursing care or advice).
Although skilled staff cost more per hour, given autonomy and resources, nursing teams quickly identify barriers and efficiencies, and so reduce overall care hours required. Since the introduction of this approach costs have reduced by around 40%, the time taken to administer care has fallen by 50%, and while those supported receive fewer care hours they and their families report higher satisfaction with the service.
In the UK this flat, self-organised model is being trialled in some district nursing groups and by Wellbeing Teams, a provider that organises care professionals into community circles. This approach has already allowed them to use technology effectively:
We use VR for pain, mindfulness apps etc. We’re able to see what the need is, because we’re already there. Like there’s a huge problem in the mental health of family carers, and a big part of that is sleep. They never get to switch off. So how can tech help? We give them a wearable to get baseline data and then try a few different methods – from lavender on the pillow to CBT – to see what helps.
Helen Sanderson, Founder and CEO, Wellbeing Teams
Empowering staff to be creative in this way will be vital to the successful adoption of technology that supports people’s wellbeing.
Recommendation: Invest in skills
Technologies in health and care will not deliver efficiency gains, cost savings, or improvements to people’s lives without the capacity or skills on the frontline to implement and support them.
Care professionals who are expert in contextual, creative problem solving, emotional intelligence, and negotiation of sensitive topics and physical pain can cross the “Last Ten Centimetres” of tech if they’re given the skills and autonomy to do so. They may not perform every fix themselves, but they can flag up problems and coordinate support.
Doteveryone recommends the Department for Health and Social Care should establish a Royal College for Carers to professionalise the care workforce so they can effectively use technology to augment their vital skills of empathy, creativity and social intelligence.
The college will require funding, and more qualified staff will mean higher pay. But this approach will save money over the long term for both individual providers and the wider health and care sector. More well trained and supported staff will mean greater productivity, less spend on agency staff, lower turnover, higher quality care, and more capacity to use new technologies effectively. The college should:
- Offer flexible, distance and online cohort learning for carers that develops technical skills in tandem with existing emotional intelligence and problem solving skills.
- Make resources available to related professions, informal carers, and individuals practising self-care.
Better Culture for Better Care
The culture a technology lands into can determine how effective it will be. Technology will do no good unless the people it’s meant to help feel able to take advantage of it and make it work for them.
Together, better data and better skills could make great technology that aims to meet the needs of social care. But technology will do no good unless the people it’s meant to help feel able to take advantage of it and make it work for them.
The culture a technology lands into can determine how effective it will be.
Technologists pride themselves on disruption. But to vulnerable people, disruption — in fact any change at all — can be frightening, even life threatening.
People must feel empowered to engage with and shape how technology is used within a sustainable social care system.
Unblocking the opportunities
A 2016 inquiry by the UN Committee on the Rights of Disabled Persons (CRPD) found disabled people in the UK were consistently portrayed as “dependent or making a living out of benefits, committing fraud as benefit claimants, being lazy or putting a burden on taxpayers” and that they suffered “grave and systematic violations” of their human rights.
Many of our research participants had their own experience of this. They told us that benefits assessors were always looking for an excuse to cut funding; that trying to recover, to adapt or to learn new skills would cause vital support services to be taken away; that any temporary change in circumstance could be used as justification to take away long term support.
I used to volunteer in a charity shop a few days a week. They understood if I was too ill to come in or if I was dizzy and needed to sit down or had to leave early or if I forgot things. But the DWP [Department of Work and Pensions] found out and then cut all my benefits and said I should be working full time in a shop. I can’t work full time! I tried but I couldn’t even do the interview! It took months 19 to get my support back and I needed to borrow money for food. I will never dare volunteer again – Research participant
This fear inhibits the potential for people to take up new opportunities – and means people justifiably fear engaging with tech and services that could mean their situation is seen to have changed.
The social care system is built around a culture of ageism and ableism: people are either ill or well; supporting or being supported; completely dependent or working full time; old and frail or young and vigorous. But the reality is a lot more complicated.
Many of our workers were made redundant or squeezed out of work while very much still able and willing to work – others can’t work full time any more but need or want to still work. Flexibility is key. They can work one Tuesday, have a hospital appointment the next – Research participant
Our participants all had stories of fear and distrust, but they also had ideas of the future they wanted to live in.
They imagined “flipping the script” on assessments; developing support panels where they would meet groups of experts — including people like them — who could share ideas and solutions, technologies and services that could help improve wellbeing, are centred on personal goals and build upon a person’s existing skills, relationships and strengths.
Living with a disability or a chronic condition is hard work. The world has been designed for able-bodied people. Adapting it to people with different needs takes a lot of energy and time. But it also develops ingenuity, and provides a different perspective on the world.
Disabled and chronically ill people, their carers and families have many ideas and solutions for overcoming everyday challenges and — as technologies become part of their lives — for making tech work for them.
But they have little opportunity to share the helpful hacks and workarounds they develop. On a number of occasions, people in our research workshops mentioned a problem they faced with technology — an app or a device that would be incredibly useful if only it worked — and someone in the room had already found a solution.
Every disabled person becomes an engineer of the technology and equipment they use – Matilda Ibini, playwright & screen writer
Sharing this information shouldn’t be a question of serendipity. To get tech working well for people, it’s vital that people can systematically share and have access to relevant expertise. This could help more people get greater benefit from the technologies they have access to; it could inform future care technologies; and also help create a more vibrant innovation landscape. A movement of patient-led research and design in healthcare over recent decades has resulted in new understanding, new drugs and revolutionary devices such as the artificial pancreas, designed by and for people with type 1 diabetes and their families. In the US the 21 The Disabled List,23 a group of creative disabled people offer design consultancy.
User-centred, iterative design is now the de facto standard for digital products and services across UK public services, including those created by NHS Digital. However, the same scrutiny and person-oriented thinking is not applied to how internet-connected devices and other technologies are deployed within the home. The next wave of technological development should not and cannot be led by industry or the NHS alone. Based on the maxim “Nothing about us without us”, disabled and chronically ill people should be given the voice and the resources to make sure technology works for them.
Recommendation: Empower the people that matter most
If technologies are to support people to live well, people must be empowered to adopt, use and improve them.
Changing a welfare system in which suspicion, hostility and fear have become ingrained requires broad societal shifts that are beyond the scope of this project, but at Doteveryone we believe it is possible to provoke change by imagining alternative futures and showing what good looks like.
We recommend that NHSX, with advice from a consortium of self-advocacy groups, fund a series of enablement panels.
This proposal reflects the ideas and hopes of our workshop participants as well as the critical need for a culture change so that more people can benefit from health and care technologies.
Rather than focussing on deficits, these panels would concentrate on the capacities and goals of the person being supported, their family, their community, and their support team. Over the course of several months, the enablement panels should listen, reflect, and explore how new technologies and services can help people achieve their goals and improve access to community and the economy.
- These panels will need to be optional and to be carefully separated from benefits assessments, so that building confidence and capacity is not punished by cuts to support in the short term.
- The project should include a training and support scheme that builds a cohort of disabled, ill, older and caring designers.
- Using an asset-based and goal-oriented approach, panels should seek to support users over a period of months to explore how tech can help them achieve their own ambitions, with resources for staff, family and community.