Are you thinking about social care?
This post was originally published in March 2016 as part of a project to transform the NHS website (and more)
We get asked quite often whether we’re thinking about social care as part of our work on NHS.UK. The simple answer is ‘yes’, but I’ve spent a lot of time thinking about this because I think the actual answer should be ‘no’.
Social care is a label that we, as government, have given to a collection of different kinds of support and funding arrangements for people with disabilities and illnesses. Social care is not a thing that people have or that people need it is a solution, or a range of solutions, that government has defined and that differ across the country.
By talking about social care as a bucket of things, we inevitably get caught up in the internal mechanics and processes of how people are ‘supposed’ to access the care that they need, of who pays for what, and which organisation has which statutory responsibilities.
To try and explain this point, I’ve decided to share my personal experience, and how I think digital services (and NHS.UK) relate to care in the broadest sense.
Experiencing excellent care
in July 2012 my dad died from motor neurone disease (MND), less than 2 years after his diagnosis. MND is a terminal condition where the neurons in the brain stop reaching the muscles.
For my dad this started with a dropped foot which made him stumble occasionally, but the muscle weakness rapidly made its way up his body and ended with him no longer being able to swallow. In the last few months his voice faded to a whisper and his breathing became more and more laboured, requiring an oxygen mask.
When I think about the physical and emotional care that he really, we as a family received from health and care professionals, some of it was truly amazing.
There was Teresa, the occupational therapist, who sat patiently with my mum and dad at the kitchen table for hours helping them to fill in the continuous healthcare assessment forms and whose arrival felt like a lifesaver at a point of desperation when they couldn’t cope but didn’t know what to do next. Teresa knew how to fast-track the application and within a few days they had funding agreed from the local council for homecare support.
There were Jamie and Ann, the two regular carers that came in the mornings to get dad out of bed, wash him, brush his teeth, and then came back in the evenings to put him to bed. They were lively and thoughtful and they grew very fond of him, and him of them. They witnessed very personal and intimate moments in our lives and as a family we were incredibly touched that they took time off their shifts to come to his funeral.
In the last few months of my dad’s life, Helen, a district nurse, talked my dad (and mum) through the choices he had about where he wanted to die, and explained what was going to happen. He wanted to stay at home, and it was the same nurse who came to the house with a sedative, easing him into a coma when he became agitated at the end, and who gave me an enormous hug before she left.
This support was absolutely essential for my dad but also for my mum as his primary carer, and I feel that in many ways we were lucky. I feel like my dad was respected and dignified throughout the experience and had a ‘good death’, a concept I hadn’t really understood beforehand.
But there are some moments that have stayed with me, when I felt entirely helpless and frustrated. This was when information or advice wasn’t available, wasn’t specific, or was wrong for our circumstances. It was when the ‘system’ failed to see my dad as a whole person, or when the bureaucracy took over people’s common sense.
This is what I think NHS.UK can help with.
How might digital improve the experience of care?
I don’t think there’s anyone who believes that digital could be an alternative to actual care, but I do firmly believe there’s a lot that could be done to help people understand and access the care and support that they need. So, what could have been better in my experience?
My dad had an open university law degree and had volunteered as an advisor for the Citizens Advice Bureau for a decade. There should be no form in existence that he would need help with, except that wasn’t the case with the continuous healthcare assessment forms.
I had thought that as someone who understands the health and care system and who has a pretty good grasp of the internet, I could help my parents by coming up with a shortlist of suitable care agencies to use. I tried and gave up, because really the only way to find specialist support to come to a village on a county border was to get a recommendation from a local healthcare professional who understood the circumstances. There were lots of websites that provided directories of care services but none of them gave me what I needed to help make a decision.
When the MND clinic said there were some apps and tools that might help my dad communicate more easily I spent hours doing research. I went round in circles because none of the tools I could find were appropriate for him. We instead bought an iPad that he could read the newspaper on. Although he couldn’t get out of his chair, or talk very well, he could still use his finger to swipe the screen and this gave him some independence again.
Adding insult to injury, and entirely unconnected to his illness, my dad went deaf in one ear. And each time we met someone new we would explain this to them and ask them to face him when they spoke. It felt like the kind of thing that simply ought to have been at the top of whatever notes they had in front of them.
But the thing that took up the greatest amount of everyone’s time and energy, was the process of identifying and ordering the equipment needed for dad to stay at home. There are so many examples of how this went wrong, which had a major impact on our stress levels and ended up costing my parents, and almost certainly the state, much more that it should have. The number of phone calls it took to get the commode or the wheelchair or the stockpile of incontinence pads taken away after my dad died was exasperating and upsetting.
Understanding people’s needs, not organisation needs
These are the experiences that frame the way I think about the design of digital services, and of service design more broadly. It’s what I think about when I hear some of our internal jargon like ‘shared decision making’, ‘access to service information’ or an ‘apps library’. It’s part of what makes me so determined that NHS.UK and any other digital services we build are built around the needs of the people who are going to use them.
Because if we were all thinking about services in the broadest sense, you’d never put a MND clinic in an outbuilding with an uneven pavement, and you wouldn’t provide breathing apparatus that doesn’t have a backup power supply to kick in if there’s a power cut.
The approach that the NHS.UK team is taking is to listen to hundreds of people’s stories, from different backgrounds, age groups, ethnicities and regions. As a team we identify the common themes that emerge, and build prototypes of services to test with ‘real’ people to better understand what they need.
Our vision for NHS.UK, based on this research, is to connect people to the information and services they need. And this will be regardless of who provides it central government, local government a clinical commissioning group or a charity.
We intend to start by providing content that is relevant and action focussed and links people through to the best tools or services for them. We also want to start developing the building blocks for future services, like the work we have done on a diabetes planner, which would connect someone’s appointments, test results and prescriptions together with information.
The information and services we talk about cover the whole spectrum of health and care, and apply to everyone, whether they have acne, a broken leg, cancer or dementia.
I haven’t led the research for this project or produced the findings but I believe very strongly in what the team has done, because we’ve looked at people as whole people and tried to understand their lived experiences.
And it’s why I think that in relation to digital services, and NHS.UK specifically, we need to stop talking about ‘social care’ as something that is different to any other kind of care. We need to keep focussed on the people we’re delivering services for, and with a service like this it’s pretty much everyone.
The answer isn’t to add more social care content to NHS Choices, or commission a new directory of care services, or build a new tool to track people’s end of life care choices though these things will probably help some people.
The big prize comes if we can fundamentally shift the way we think about care, as something that is integral to people’s lives, and can’t be disassociated from NHS care or from their housing needs or benefits.
We must stop reflecting our siloed government structures onto the public, who simply want to access and receive the care that they need. They don’t understand how the health and care system works and they shouldn’t have to.