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Research
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How can we humanise services and build communities?

Posted By Clore Social Leadership, 26 April 2017
Updated: 22 October 2020
We are accustomed to reading reports on the unprecedented challenges facing the NHS and social services, along with the ever present caveat, ‘the increasing ageing population’. Framed in this way the future of health and social care is grim – conjuring images of a dystopia where many of the most vulnerable are forgotten and neglected.

Yet we can absolutely change this. I have had an incredible personal experience of working alongside a community which collaborated with organisations to effectively combat crime, improve the local environment and support each other to learn and build education, careers, health and wellbeing. If this is possible in one disadvantaged community over a few years, surely a healthier, more socially just society with vibrant, caring communities can be built?

The research project I developed as part of my Clore Social Leadership Fellowship has provided me with a golden opportunity to delve more into this question. The main findings were as follows:

Projects carried out in isolation will have limited impact

Firstly the paper explores the concept of wellbeing and how wellbeing is achieved. It then goes on to explore some of the practical ways in which individuals, families and communities can be supported. It argues that projects carried out in isolation will always have limited impact and will not lead to systemic change nor the building of resilience in individuals, families or communities. In other words, doing sophisticated, cutting edge person centred planning with individuals will have limited impact if the family and community with which they live are not able to be inclusive, supportive and enabling. Equally, great community projects are not enough if very vulnerable individuals are not supported. This diagram aims to demonstrate the interdependence of individuals, families, communities and services as well as local and national government.

Bespoke solutions with individuals, families and communities mean getting it right first time thereby reducing waste and costs

Systemic change is rarely achieved because working in silos can be perceived to be easier to comprehend, organise and deliver. This paper aims to show how systemic change can be implemented and shows that it is not a daunting utopian ideal. It also emphasises that rolling out large scale programmes with no regard to local context is an expensive mistake.

We need a greater focus on coproducing social outcomes, based on what matters to people rather than coproducing services

Organisations and institutions focus time and energy on consulting about their strategies and services; in more recent years they have been looking at way to coproduce services. However, this paper argues that more systemic change will be achieved if the focus is on the wellbeing of people and communities rather than services. Services can then be shaped around people and communities in a way that is supportive rather than undermining.

Distributive leadership

Aneurin Bevan said that the ‘purpose of getting power is giving it away’. Supporting people to take a lead in their own lives, their own families and communities is our biggest challenge as we have built a culture of centralised leadership. We have to consciously learn to give power away as leaders of organisations as well as to take more control of our own lives, as citizens.

Taking more placed-based, relational approaches are of fundamental importance if we are to achieve sustainable wellbeing

Finally, the paper sets out the challenge to both the public and voluntary sectors to invest in people and communities whilst reducing unnecessary costs. The recommendations show how:

  • The voluntary sector, local and national government can move towards empowering individuals, families and communities simultaneously in a more skilful and adaptable way than ever before.
  • Governments can develop a new approach to accountability that enables leadership and innovation at all levels rather than stifling it.

You can download the full provocation piece here. Please share your comments below about this blog and research, or you can join the conversation with Jenny on Twitter.

Tags:  casestudy  challenges  change  collaboration  community  future  opportunity  research  wellbeing 

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Who speaks for who? People affected by life-limiting illness as advocates

Posted By Clore Social Leadership, 06 March 2017
Updated: 22 October 2020
18 million people die in pain and distress each year around the world because they don’t have access to palliative care including medications to treat pain. This is a horrifying statistic, and unfortunately easier to comprehend and empathise with if you have witnessed a painful death. But palliative care is not just about dying well, it is also about people with life-limiting conditions, such as cancer, HIV and dementia, and their families and carers, living well. It is about working with people affected and different professionals and health care workers to ensure that physical, psychosocial, legal, economic and spiritual needs are met.

40 million people could benefit from palliative care worldwide yet less than 10% access it globally. 42% of the world’s countries have no hospice and palliative care at all and the situation is hugely inequitable. In many low and middle income countries where there is palliative care, it may only serve a fraction of the need. In Pakistan for example, there is one service in a country with a population of 90 million people. 5.5 billion people live in countries with low or no access to medications for pain treatment. For children, the situation is particularly challenging. 21 million children need palliative care globally. In 2005-2006, children and youth under the age of 21 made up 40% of the intake into hospices in South Africa. Globally, palliative care services for children are rarely available.

So how can this be the case? Well firstly, palliative care is a relatively new concept. It began with the development of the first modern hospice in Sydenham by Dame Cicely Saunders in the 1960s which led to the vibrant hospice movement in the UK and to the expansion of care internationally. The term palliative care was first used in Canada in the 1970s because the word ‘hospice’ created confusion in the French language. Some have suggested that it is not surprising, given that the concept is so new, that there is still such inequitable access.

In addition, there are lots of challenges facing its development, not least lack of understanding about what it means and can offer, lack of political will and policies, legal and regulatory barriers which prevent availability and access to essential medicines and lack of training of health professionals. In addition, we have global and national health systems which focus targets on saving lives and increasing life years. No-one of course argues with this focus, but with mortality remaining at 100%, the growing incidence of non-communicable diseases (NCDs), including cancer and dementia, and an aging population, we need much more focus on sustainable ways to ensure quality care as we live and approach the end of our lives.

Having worked on advocacy on this issue for a number of years, it is evident that while progress is being made, it is not happening quickly enough. We know that social justice movements led by people affected, in particular the movement around access to HIV treatment, can result in dramatic and impactful social change. This provocation piece seeks to explore some of the questions around the extent to which we see people living with and affected by life-limiting illness advocating globally for palliative care access, the challenges faced and the potential power of these voices. Perhaps we need to readdress the existing power balance and look at who is speaking on behalf of who to develop a more impactful social justice movement on the issue?

You can download Claire’s full provocation piece here.

Please share your views about this blog and the full article in the below comments, or you can contact Claire via Twitter.

Tags:  advocacy  casestudy  health  research  wellbeing 

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