Transformation in health and social care: ‘all that matters is what we do’

Transformation in health and social care: ‘all that matters is what we do’

Cat Macaulay

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)

 

 

Debate about future of Social Care is Vital

Social work and social care are not valued enough and neither is there enough anger about the poor outcomes experienced by disabled people and unpaid carers says Lynn Williams, Unpaid Carer.

I was very privileged to have the opportunity to speak at the recent ALLIANCE event focussing on the recent Audit Scotland report “Social Work in Scotland”.  Read More “Debate about future of Social Care is Vital”

Podcast: Target Culture – Measuring success?

Across the UK, the NHS, in particular, has often been accused of using “external stimuli such as targets” when attempting to make significant change.

Recently, the Health and Social Care Academy of the Health and Social Care Alliance Scotland (the ALLIANCE) and The Royal College of Nursing Scotland hosted a round table debate on changing our targets culture.

Following the event the ALLIANCE and RCN Scotland wrote to Shona Robison MSP, the Cabinet Secretary for Health, Wellbeing and Sport, about targets and a Scottish Government review to be led by Sir Harry Burns.

In the latest Academy podcast we hear from Hugh Henry, a former Scottish Executive Minister and MSP, on the challenges of a “target culture” and what we need to do to create a culture that enables change.

#RightToHealth – Jennifer Glinski

The majority of us do not think about our health until something is wrong. It is therefore fair to assume that even fewer of us think about our ‘right to health’ or know that a concept such as the ‘right to health’ even exists. But what if your day to day life was uncertain and unsettled thus directly impacting not only your health but also your treatment options? What does your health or the right to health mean when who you are or what you are experiencing determines the access and quality of care you receive?

In a groundbreaking piece of participatory action research funded by NHS Health Scotland, the Centre for Health Policy at the University of Strathclyde in partnership with the Health and Social Care Alliance Scotland, the Health and Social Care Academy, SNAP, Glasgow Homelessness Network, and the Mental Health Foundation, sought to answer those questions by conducting research alongside members of some of the most vulnerable populations in Glasgow. Peer researchers from the Mental Health Foundation and the Glasgow Homelessness Network met with over 80 research participants who were either refugees or asylum seekers, or persons who had experienced homelessness in Glasgow. The results of the focus groups and personal interviews by the peer researchers give a unique insight into the lives of persons who experience hardships and discrimination in their quest to maintaining their health and well-being.

This Friday, 26th August 2016, the University of Strathclyde warmly welcomes you to join us at the launch of the What do you mean, I have a right to health? research project. The launch will feature a presentation of the key findings and the opportunity for the peer researchers, who themselves have either experienced homelessness or the asylum seeking process, to share their experiences of health and the research process. The session will include the premiere of a new film by Kate Burton, ‘A Right to Health: the view from here’.

The launch will be followed by a talk by Professor Alicia Ely Yamin of Georgetown University on the elements of a human rights-based approach to health.

This event will be of interest to anyone with an interest in health and human rights, including those with personal experience of human rights issues, policy makers and practitioners.

To book your free place on this event visit the Eventbrite page.

 

Podcast: Ceding power – Participatory Budgeting

What does ceding power mean in practice?

In the latest Academy podcast we hear from Alistair Stoddart, Scotland Network Manager at the Democratic Society, about how participatory budgeting (PB), a practical tool to support community decision making in resource allocation, is progressing across Scotland.

Read More “Podcast: Ceding power – Participatory Budgeting”

Podcast: Courageous Leadership – “Walking The Journey With Others”

How can courageous leadership support health and social care integration?

In the latest Academy podcast we hear directly from Anne Houston, Director of Coaching for Life Limited, who is an experienced facilitator of leadership development programmes, to consider how leadership can encourage transformational change.  Anne offers us her thoughts on the conditions required to put these principles at the forefront and how leadership can be enabling of others within the new landscape.

Read More “Podcast: Courageous Leadership – “Walking The Journey With Others””

Person Centred Care needed to Transform a Service?

Monday was my first time at an ALLIANCE Annual Conference and I certainly enjoyed myself and found the day to be really interesting and useful.

There was one thing that stood out for me from the day. I attended the “What does it take to transform a service?” workshop. One of the services highlighted was about the Ins:PIRE project up at the GRI which is a support programme for the 5 week period after someone has been treated in Intensive Care. One the users of the programme who featured in the video shown has had an ileostomy formed after surgery and he was having difficulties getting the colostomy bags to stay on and their leaking was causing him to lose confidence about leaving his house. However, as a result of the Ins:PIRE project being there he was able to go back to the hospital and get the help he needed to sort things out.

This really resonated with me as after I has surgery to have a temporary ileostomy a couple of summers ago I had exactly the same problem with colostomy bags not sticking. I had been housebound as a result of my severe Ulcerative Colitis so I had gone for surgery to remove my colon and hopefully reduce the impact of the symptoms of UC and allow me to lead a “normal” life. However, when I started having problems with my colostomy bags leaking it really knocked my confidence and I became a near recluse again given that there had been times when the bags had leaked in public and I had a torrid time cleaning the mess up. Having been through one major surgery I was desperate to try to get out and about and enjoy the Scottish “summer” before I went back at the end of summer to get what was left of my insides reconnected so going back to being housebound was not what I’d expected.

At the time I didn’t know who to turn to: was it my GP, the IBD ward at the hospital that I’d had the surgery at, the stoma nurse or the colostomy bag suppliers? Eventually I was able to be put in contact with the stoma nurse at the local hospital, which was not the hospital I’d had the surgery at, but we were able to try various things to reduce the problem which worked to a certain extent but I was able to struggle through until the operation to reconnect me.

Had there been a service like the Ins:PIRE project in place at both the hospital and time that I was having the problems then I might have felt better able to raise the problem with someone and hopefully find a solution. Having been quite seriously ill and then had major surgery my confidence at the time was very low so I felt that I was being a hassle to the people that I was contacting to try to get help. The Ins:PIRE project was able to help the gentleman in the video shown at the workshop and I was glad to hear that such things were in place, albeit not yet yet rolled out across Scotland.

Creating health and wellbeing in the communities we care for – a student nurse’s perspective

When I saw the Health and Social Care Academy was hosting an event with First Minister Nicola Sturgeon on creating wellbeing in Scotland, I knew that I had to attend. As a student nurse in my final year writing my dissertation on health inequalities, the opportunity to watch politics in the moment on such pertinent health and social care issues was too good to resist.

Read More “Creating health and wellbeing in the communities we care for – a student nurse’s perspective”