Fixing the UK's broken social care system

The UK social care system is already in crisis. Now, after years of chronic underinvestment, it’s been pushed beyond breaking point.

Over 1.2 million people aren't getting the care they need. More than 110,000 care roles are vacant, a quarter of home care providers are almost bankrupt, and a third of postcode areas in England have no spare care home beds.

These pressures are only going to grow. Lifespans are getting longer, but healthy lifespans aren’t keeping up, so more of us are going to spend more of our lives with chronic illnesses or disabilities, or caring for loved ones who do.

How to make these sums add up? Matt Hancock has said that technology is the only way we will ‘bridge the gap between finite resources and the growing demand’. The Centre for Policy Studies found potential savings of £6bn across health and social care. Industry groups have chimed in; the UK Robotics and Autonomous Systems Network assures us that robots can intervene proactively in ‘medicine adherence, nutrition and rehabilitation support, as well as social engagement’. Local councils such as Hampshire and Oxfordshire are on board, trialling Amazon’s Alexa to help people live independently.

We spent 2019 speaking to people on the front line; disabled and chronically ill people who receive care services, people who care for loved ones, care professionals, care providers, and health professionals about their experiences of services and experiments on the ground. One research participant said, ‘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.”’

Front-line stories reveal a simple, obvious truth: that technology doesn’t work if there isn’t a human around to install it, to log in, input data for a profile and features, to reset it if it crashes, to notice that it’s run out of battery, to explain how to use it, and most importantly, to ensure it actually solves a real problem and is genuinely suited to end users’ abilities and needs.

Technology won’t solve problems if we don’t listen to its users about what their problems actually are, and what they need to overcome them.

Jess Thom, theatre-maker and co-founder of Touretteshero, said, ‘The physical Tourette’s 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.’

Voice assistants designed by able-bodied people don’t cater to users with conditions that affect their lungs and who cannot raise their voice above a whisper. Nor does such technology accommodate 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.

Doteveryone’s latest research, Better Care in the Age of Automation, sets out three key conditions for the foundations needed for any technology in care to be responsibly and effectively deployed.

These conditions are: the data to understand, design and develop for holistic wellbeing; the skills required to use tech to care; and the culture to empower people to adopt and shape technology to their needs.

The data

The development and implementation of technology in social care will be shaped by the data the sector collects and the targets it sets. Current metrics are fragmented and siloed, focused on short-term costs and process efficiency. If new technologies are to improve wellbeing, we need to understand wellbeing.

Doteveryone recommends that NHSX, the new digital arm of the UK's health care system, lead a new national data strategy for social care. This strategy should focus on the wellbeing and productivity of individuals, families and communities, incentivising the development of technologies for long-term benefits.

The skills

Neither end users nor the public purse will see any real benefit from new technologies for care if they are not implemented effectively. This means giving people on the front line need to be the skills and autonomy to work with it, to identify and overcome problems. We recommend that the Department of Health and Social Care support the founding of a Royal College for Carers to professionalise the care workforce, so they can use technology to augment their vital skills of emotional intelligence and creative problem solving. This new college can use the best of new technologies and models for distance, on-the-job learning, supporting not replacing practical and social skills.

The culture

We are not going to see the benefits of tech unless we put power in the hands of older and disabled people, and their families, let them define and describe their challenges, interests and goals, so that the systems being designed serve real purposes. If users don’t see their own goals, needs, and ideas reflected in the technology available for them to use, they won’t be motivated to adopt it.

Too much technology for care and independent living is designed without consulting those who will actually use it. Even when technology works, a culture of blame and suspicion towards those who receive benefits and support has left many disabled and chronically ill people afraid to try new technologies in case it jeopardises vital support packages.

Overcoming a culture of ableism and ageism, and pivoting to a system that supports everyone to thrive will not happen overnight. Long term, a sustainable care system in a changing world requires that we support everyone to contribute and connect with economy and society over the course of longer lives.

We know we can’t change a whole culture overnight; but we can demonstrate what this new future could look like by establishing vanguard Enablement Panels, funded by NHSX and run by and for disabled and chronically ill people, carers and families.

The idea for the Enablement Panels came from our workshop participants, who wanted to ‘flip the script’ on their usual encounters with the health and care sector; designing a system that sees the capacities and goals of the person being supported, their family, their community, and their support team, that identifies and overcomes barriers, and enables people to recover, to adapt to changes, or to live well with conditions.

These panels should:

• be optional and carefully separated from benefits assessments, so that building confidence and capacity is not punished by cuts to support in the short term
• include a training and support scheme that builds a cohort of disabled, chronically ill, older and carer designers
• use an asset-based model, and set long term goals, not focus on a person’s deficits and short term fixes.

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 for all of us throughout longer lives.

Technology can be a part of this change, but only if we lay these key foundations and commit to a bold vision of better care.

Lydia Nicholas (@LydNicholas) is Programme Manager at Doteveryone.