Transformation in health and social care: ‘all that matters is what we do’
Transform, evolve, improve, change, design, innovate. Words so interchangeably used they’ve all but lost their utility. Yet, we know it when we see it. The (ongoing) transformation of health and social care is something I have both watched and lived for many years.
I work in digital public services transformation, but my professional life is not my only reference point. In my personal capacity as a person with multiple sclerosis (MS) I have lived long enough to have witnessed the transformation of health and social care services. My own relationship with the idea of health and social care has also transformed utterly since being diagnosed with MS over 20 years ago. The challenges this has brought into my life have led me on an often difficult and equally often life enhancing journey of exploration of self, of society and its attitudes towards illness and disability, and of our health and social services.
I grew up in a Scotland where ‘the doctor’ was someone you saw very rarely and who ‘made it better’, and ‘the hospital’ was somewhere people went to give birth, die, or have emergency treatment. Both were to be avoided if at all possible. Feeling ill, minor injuries, these were things your mum or your granny dealt with. There was no internet to be consulted, just the internet of women who knew what to do until such time as they decided it was a matter for ‘the doctor’.
In the early 1990’s, the health service wasn’t really prepared to deal with someone with a progressive and incurable disease. They didn’t know what to do with someone who couldn’t be fixed, and I didn’t know how to be unfixable. I suspect we both felt disappointed by each other. For some reason none of us considered the idea that perhaps the need was to learn to live with, not focus on ‘being fixed’. The transformation I am seeing emerge now is one of embracing the idea of managing health together. As MS clinics and nurses, new symptom management and disease modifying drugs, and patient support groups popped up I began to understand that how I lived with my multiple sclerosis would be as much an outcome of what I did as of the medical profession’s interventions.
It seems strange now but when I was younger ‘health’ was something other people did to me, rather than something I had or controlled. As the century drew to a close that began to change. Self-management entered my vocabulary. The web gave me access to information. I began to feel more in control of how I lived with, even if I could not control what I lived with. That’s the transformation I have seen emerge.
Now it’s not been without its teething problems: when should or shouldn’t I seek medical profession support; which of these conflicting bits of advice is the correct one; what happens when I have become convinced that a treatment or drug will help but it is not available on the NHS; do I call the GP or the MS nurse when something happens; who is my ‘go to person’?
Still, teething problems aside, the transformation in me has been significant. I feel much more confident in my ability to constantly adapt to the changes of a progressive disease. I view the medical profession as just one part of my self-management system, rather than as the place that owns ‘making me better’. Even if in my low moments I still wish that ‘the doctor’ could make it better I have become much more positive about my ability to live with MS. As I get older and experience greater disability my mind has naturally turned to care as much as health, and here too I feel more willing to explore what I can do to ensure I have the care I need. I’ve made adaptions to my home, and there are more planned. I’ve prepared an advance directive, looked at care options and costs, and generally begun to prepare for a time when my ability to look after myself may be impacted (the most annoying thing about MS is that you simply cannot tell what it will do to you until it happens).
Of course there’s a but… and it’s that I am lucky. I am still functioning physically and cognitively pretty well. Unlike most people who have had MS 20+ years I am still able to work, thanks largely to a profession that lends itself to accommodating my condition, and a highly supportive employer. I have a family who provide a huge amount of additional support with health needs and around the house. I live near NHS Tayside’s Ninewells Hospital in Dundee where I have the support of an excellent MS Clinic (MS nurses, MS physio, neurologist) and I have the future security of a pension. Without all of those would I be so positive about the transformation I have seen in health and social care, so able to self-manage, so willing to engage with professionals as part of my support team? Even with all of my advantages there are times when I feel bewildered and overwhelmed by the effort of self-management, fearful of the future. How can we ensure that the benefits of this transformation are evenly distributed and what about those who just want someone to make it better or who will never be able to independently self-manage?
Realistic medicine, the integration of health and social care services, the growth of digital public services, all suggest that both the Health and Social Care professions and the people of Scotland are on a fast moving journey of transformation in how we understand, think about and attend to our heath and care needs. We have challenges ahead. This demands we learn to relate to each other in new ways, creates new pressures and expectations on both people and professionals, needs us to find new ways of thinking about old problems, even to rethink what we regard as ‘the problems’. What seems clear is that the time of ‘being fixed by the doctor’ is transforming into the era of working with health and social care professionals in the pursuit of the best health our circumstances will allow, and the care that will ensure we can maintain that as best our circumstances will permit.
What excites me professionally about health and social care transformation is the opportunities that come in the wake of this transformation, as all of us begin to acquire the skills of creativity and innovation that are undoubtedly at the heart of delivering it. What excites me personally is the comfort of finally accepting that learning to live with is the goal, and the realisation that as someone with MS I have a chance to be part of community driving national change in how we collectively learn to help each other live, and die, as well as we possibly can. As our other national bard, the wonderful Liz Lochead, once said (albeit in a slightly different context):
Only by a shift and sharing is there any chance
For the Welfare of all our people and Good Governance.
Such words can sound like flagged-up slogans, true.
What we merely say says nothing —
All that matters is what we do.
(from Connecting Cultures)