Everyone will need social care at some point, yet it is a neglected and much misunderstood area – especially in the digital context. Tommy Henderson-Reay, a registered social worker and Social Care Digital Engagement specialist at NHS Transformation Directorate, spoke to Brian Runciman MBCS about it.
Social care is a complex mix of local government, independent care providers and charities - all of which have very different governance structures and vary significantly in size. Social care is about supporting people to live as independent lives as possible, in their choosing and setting, and covers a very broad range of scenarios from children to adults. For example, in the context of children, the issues can include safeguarding concerns, people whose family situations are broken down, those that are offending, those that require mental health support, those that need additional housing support, those that have complex mental health needs, those have complex physical needs and more.
As Tommy Henderson-Reay says, ‘everyone will need social care at some point, so it is a benefit to the every person in society that we have it. However, it's only when you or a loved one engages with social care that you realise how complicated and convoluted it is. And on the resource side, neglected and there for the benefit of the NHS. For this reason, the sector is often called the Cinderella service.’
He views his angle as even more niche than health informatics - because social care informatics is an even more unexplored area. ‘I am a registered social worker,’ he says. ‘That's my trade and I've worked in social services for a long time, but I've also worked in social care for a long time. My lasting memory of many, many years working in frontline adult social services was the inability to get the information you needed to do the job you needed to do, and it was infuriating, and I think it's the people who are in crisis who need support, who ultimately suffer the most for it.’
Tommy was motivated to join the policy world in order to do something about that, an unusual route for most social workers. He is a very strong advocate for social care, what it really means, and how it is different to the health service, but at the same time how beneficial it is for everyone in society.
‘Sometimes I'm a lone voice in this space,’ he says, ‘because informatics is a word that is tricky to define at the best of times. There're about 1.5 million people who work in social care, that's a lot of people, but most people have no idea what you're talking about. The reason I'm in this game is because it's about language translation. I think the essence of informatics is about trying to empower people who are making decisions. And trying to highlight the person who's receiving care at the end of it.
‘It is often viewed as a part of the sector that allows the NHS to work better, but in fact social care and the health service are two sides of the same coin. You cannot consistently push money into the NHS if you don't look at social care. It's a bit like increasing the velocity in your tap so that your sink has more water, but failing to invest in a decent plug.’
Defining social care
Tommy views the very definition of social care as highly complex. ‘The problem of the definition itself is one reason why social care doesn't have the traction that the health service does. For example, if you're on the street and you ask people about the health service, they will tell you what they think because we all at some point need the health service, whether that's a GP’s appointment, or whether you go to hospital for your child being born or whatever it is. But with social care until you need it, you don't have much of a grasp of what it is.’
Tommy demonstrates the complexity: ‘For example, when you become 18, you become an adult, obviously, so you may come under adult social care. Adult social care covers things like residential care, nursing care, care in someone’s home, and supported living - having a housing setting that is geared up for later chapters of life. It could be extra-care supported living communities, older age communities, mental health services, learning disability care support, befriending services, substance misuse services. A significant proportion of people drawing on care and support are working age adults.
‘No government really has an appetite to say “we're gonna increase taxes for everybody to pay for something that you're gonna need in 25 years’ time” It doesn't sell so well.’
For the digital context, Tommy says: ‘Sometimes I do use the word informatics and then caveat it with the definition behind it. And the definition can be hard to find. So I think it's about using technology, it's about digital, it's about using data in a way that amplifies the story of social care. So in theory, in my view, if you had empowered social care informaticians, they would be empowered to amplify the story to everybody in society - policymakers, and people on the street - as to what the reality of social care is and how good technology can really help improve the quality of care people receive.
‘The health service would say something like “data saves lives – we use the data to help keep people alive”. Whereas in social care the phrase is much more “data enriches and empowers lives” – it is about enriching lives rather than saving people.
Digitising social care
Tommy’s view is that social care often goes under the radar because people with disabilities, physical or mental, are often on the edges of society. They can be ostracised, so care hasn’t been at the front of the queue for digitisation. As he says, in our society we were much quicker to digitise banking than health.
So, if we had a properly digitised health & social care system, what would that look like for a practitioner?
‘If we go utopian with this’, says Tommy, ‘I think that you would have a variety of different systems that were designed to reflect the complicated nuance of the sector, all with the ability to feed into a connected pot so that both sectors can pull out the relevant data about a person and their story on the health and care journey.
‘It means that the practitioner has the right information at the right time. The technology should be agile and adaptable enough to reflect all of the nuances of, for example, caring being received in someone’s home versus residential care versus a supported living approach.
‘Then whatever mental health services or learning disability services are needed – whatever data is needed – would be fed into a mechanism so that the GP who connects those people is able to draw out what they need to understand the story. That may be what's happened before they went into that clinician’s room, or with their physio in the hospital on the ward when that person fell over – whatever it may be. We should have a wraparound holistic view of care and when the person leaves the hospital their digital journey follows their human journey, so that the two notions of the human and the technology are in sync, rather than diametrically opposed, or a post code lottery, depending on fortuitous data sharing arrangements between regions, which is how it is at the moment. This would also empower the practitioners to know what good user-centred design looks like.’
The main issue standing in the way of getting that connected view is quite simply capacity. ‘If I'm an ambitious technologist in social care,’ says Tommy, ‘a lot of what I'm contending with is capacity. I don't have enough money or staff to do what I need to do because hey, there's 150,000 vacancies on any given day, so I can't afford to think about technology.
‘The landscape for technology is massive in health and care, but if we're talking about social care specifically, most care organisations are private, they employ under 100 people and they're mainly tied to local authority funding, so they don't have a lot of money. So, if there are technological ambitions, where do you go to find out the right advice? How do I make sure my staff know what they're doing once they've got the stuff? How do I convince the staff that don't wanna do this that they should do? How do I know that in two years’ time it is still gonna work?.’
Another issue for Tommy is trusted sources for guidance: ‘The NHS has trusted sources - the NHS websites, whereas because social care is local authority-dependent, because it's voluntary, because it's charity, there isn't a one-stop-shop for advice.
‘Lastly, long-term sustainable funding for the sector is what every person in society deserves.’
For IT professionals that aren't in social care, Tommy is keen for them to understand the challenges it faces, maybe as an inspiration to get more of them involved. He is at pains to point out the absurdity of technology that's designed in the absence of the people who receive the care - it's really bad practice. ‘So if you're an IT professional,’ he says, ‘it's all about the user-centred design. Getting technology to amplify the story of the person who's receiving care. If you can do that, that's the art.’
Be part of something bigger, join BCS, The Chartered Institute for IT.
In terms of successful implementations, Tommy mentions effective sensor systems in people’s rooms. Using technology that learns the patterns and rhythms of a person's sleep at night, so that overnight care staff can better help them understand when a person's movement in the night are completely normal so they don't need somebody waking them up in the night to make sure that they're OK. That means they're bright and fresh in the morning, and if that person has dementia, it means that their behaviour is much easier to manage. They're much more awake, easy to engage with and their quality of life goes up, all because you've used a proportionate piece of technology that is not invasive.
‘That is ethically covered from a privacy perspective,’ he says, ‘and it's just good use of technology to really amplify the story of the person given care – but not many providers do that a because they can't afford to.
‘Another example would be people with mental health problems using apps to articulate how they're feeling throughout the day, and some of the challenges they face, so that carers would know how best to engage with someone who might have a real problem with communication. Again, this is about user-centred technology.
‘If someone in a care setting has family members who live the other side of the world, a family portal that articulates what's been going on is hugely helpful. It can include pictures so your loved ones know what the person has been doing during the day. You learn much more about them in their new home setting than you would do otherwise.
‘Then there are robot carers that are befrienders, widely used in Japan. They have also been used in Hampshire and other care settings - social care robots are very much a thing. It’s like petting animals for people with dementia - it really helps. It's a big industry, so lots of people are trying all kinds of different things.’
As society become more individualistic, people have started to shy away from monolithic organisations, but part of the problem in social care is that it is all just too splintered. In this case there is actually a there need for some sort of overseeing organisation - some sort of connective tissue between all these functions. Tommy agrees. ‘It's a really difficult balance to have between a sector that is primarily independent and an overseeing arms-length, body of independent organisations. I think there is a case for a nationalised care service of some description.’