Enabling individuals to be active participants in their health and wellbeing

Our Chief Officer, Sara Redmond, spoke to Reform Scotland about the fundamental shifts required for effective public service reform.

Public service reform is often viewed through the narrow lens of delivering better services for the public in a more sustainable manner. Yet an important missing dimension is a focus on the purpose of public services and where reform is needed. Scotland needs reform that brings greater empowerment for people with lived experience of accessing health and social care.

When we review the evidence of what makes up an individual’s sense of wellbeing, health features as one of the most important parts. Health matters, and when we experience ill health, it impacts negatively on our wellbeing. Currently there are more than 2 million people living in Scotland with one or more long term condition and recent projections predict that our health as a nation is going to worsen over the next 20 years. Furthermore, you are more likely to experience ill health and from an earlier age if you are living in deprivation.

Yet there is insufficient attention given to shifting the focus of the health and social care system on supporting people to realise good health and wellbeing. One of the key drivers outlined by Christie was to deliver better outcomes for people which avoided and prevented the amount of harm and unmet need that is currently too often a feature in our services and how they integrate.

I would not deny the current analysis that the NHS is facing crisis, nor indeed social care, and can’t overlook the burnout and harm too many of the workforce are feeling because of the current way in which they are being required to carry out their roles.

But we must acknowledge that often time is spent on doing things that don’t offer the outcomes people need and value.

At the Health and Social Care Alliance Scotland (the ALLIANCE), we know from the people we engage with that the ways health and social care services are delivered do not meet individual’s needs. Through our Health and Social Care Academy we have been exploring with a range of people working in and accessing health and social care the systemic changes required to make a more equitable society with public services designed to support people to thrive. One of the ambitions for change is to move away from measuring success in health and social care from short-term targets towards the outcomes that matter to people.

All too often challenges in health and social care are described with reference to delayed discharges waiting lists, increasing demand, and long waits in ambulance bays. Yet I would suggest that these are the symptoms of a wider systemic issue – the disempowering way in which services and care are delivered. 

Yes, there are too many people sitting on waiting lists to see a healthcare specialist or to get health and social care services. However, the issue is not just the waiting lists, but the limited engagement with the person about the options and support available to them while they are waiting.

Rising demand could indicate that people increasingly understand what treatment, care and service options are available to them, rather than this being about growing need (and often need which goes unmet).

The limited control and involvement available to people navigating their way through health services is a key driver of the inefficiency that should be designed out of the system, alongside the reductionist way in which health and social care defines a person by the nature of their condition, their symptoms, or an equivalent label.

There is a well-developed evidence base – including the Marmot Review and its ‘10 years on report’ – that outlines having control over one’s life is critical to an individual’s health and wellbeing.

Over the past 18 years the ALLIANCE has actively engaged with thousands of people across the country on multiple issues. We regularly hear people describe the systemic harms they have encountered when trying to access care, support and treatment, and which ultimately leads to disengagement.  There is a concerning accountability gap in the health and social care system.

People too often describe the passive way in which they are engaged with – commonly describing having to fight, feeling ‘gaslit’, the self-doubt this can lead to, and to “significant impact on my mental health” and “suffering as a result”. “People are bounced around like pinballs in a pinball machine and then we wonder why they disengage”.

One of the most seminal pieces of policy making the ALLIANCE was involved in was the co-production of the ’Self Management Strategy for Scotland: Gaun Yersel’, which was led by our members in partnership with Scottish Government.  This strategy describes, through a focus on powerful composite stories, the importance of the health and social care system working with people as active participants in their health and wellbeing, and of the need to see the whole person beyond merely the condition they present with. It was bold not only in prioritising a focus on supporting people to be equal partners in their health and wellbeing, but also by ‘walking the walk’ by inviting individuals with lived experience and the third sector to write the strategy and leading the agenda. Change happens when power is shared.

Despite a shift to greater involvement and recognising the value of lived experience, and an attempt to be more inclusive and person centred in Scottish policy and legislation, there are still very limited and constrained ways for people to have meaningful engagement in redesigning the system. There is much to welcome in the Realistic Medicine narrative which has been present in Scotland for the past few years, yet the importance placed on shared decision making in policies and action plans is not being seen in their implementation. Indeed, I would suggest there needs to be even greater ambition by moving towards supported decision making in line with the UN Convention on the Rights of Disabled People.

I believe there are two fundamental shifts required if public service reform is to truly serve people across Scotland – free, active and meaningful participation, and empowering, inclusive prevention.

This first shift is towards greater participation of people with lived experience in decision making – both individually as an expert in their own experiences and also collectively at the level of system reform. I would suggest that this needs to be deliberative, inclusive of a diverse range of perspectives, and meaningful.  

I often hear views expressed by policy makers and healthcare professionals that ‘peoples need to take greater responsibility for their health’, but the same could be levelled at the NHS. We get the system we have designed – so policy makers and professionals must recognise their responsibility for redesigning it, be courageous, and ask themselves who is well placed to identify the reforms which are needed.  I would argue that it’s the people whose health outcomes are currently not being met by the current system. They, too, have a right to participate in free, meaningful and active decision making; a right that is too frequently infringed.

The second shift is to understand that prevention is impossible without inclusive, empowered communities. The circumstances in which we live have a greater role in shaping our health than the NHS. The focus must shift away from merely focusing on the services that are delivered towards a strategy for mobilising and supporting community assets.  We only need to consider what happened during the COVID-19 pandemic, which demonstrated the significant role that communities and the third sector played in supporting people when statutory services were redirected or stopped.  Yet this essential sector of voluntary organisations, charities, social enterprises and community groups is still overlooked and undervalued.

The concept of social capital is an important one when understanding the risk and protective factors in individual and collective health and wellbeing. By social capital I refer to the existence of strong bonds and trust, communication, joint activity, cohesion and a sense of collective efficacy within a community. Wider evidence describes the need for neighbourhood connections, decision making influence, supporting a community’s capabilities, as well as consistency and commitment over the long term as enablers which can lead to greater community agency and control.

Scotland was pioneering in setting up the Self Management Fund for Scotland back in 2009. Since then, the Fund has invested £26 million to over 430 community led approaches that work to empower and support people to live well. Scotland also demonstrated social innovation by recognising the need to invest in a role that combines a focus on self management and empowerment, with a deep understanding of the social determinants of health, to bridge the gap between services and communities – the Community Links Worker role. The ALLIANCE has been fortunate to lead and work with Scottish Government on both these initiatives, but both have also been constrained by the limits of short term funding or a lack of a strategy to sustain them.   

We need to move away from short term pilots, these serve to destabilise the third sector and community trust and engagement.

Millions of people living with long term conditions are self managing daily, but without access to the building blocks of good health and within an environment which has enabled a range of health harming commercial activities to flourish which expose people to negative health outcomes – gambling, alcohol, tobacco, foods and drink high in fat, sugar or salt.

Rather than being left to ‘get on with it’, the approaches invested through the Self Management Fund and the Community Links approach demonstrate the support we need for people to feel empowered and able to live well. They are examples of the enabling scaffolding which help people feel able to ‘take greater responsibility’ but this needs to be accompanied by a reframing of this narrative which moves us away from a blame culture towards an unwavering commitment and long term strategy of investing in our communities and the building blocks of health.

I refer to the previous contributors who have critiqued the problems with NHS governance and the confusing, dislocated government strategy for health and social care in Scotland. To this I would add that if we are serious about focusing policy on prevention and investing in the conditions which support good health and wellbeing, we need to shift the locus of the conversation away from policy makers and those who work in the system to people and communities. Decision making must be shared with – if not led by – the people accessing health and social care. They should have a greater and more meaningful say in the changes which are needed. Crucially, this is the route through which to mobilise and support community agency but which will require a fundamental change to existing culture, mindsets and practices.

This opinion was initially shared by Reform Scotland. You can read it here.

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