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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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The paradoxes of the modern leadership challenge

Posted By Clore Social Leadership, 31 October 2016
Updated: 15 October 2020
Steve McGuirk is the former County Fire Officer of Greater Manchester Fire and Rescue Service, and Chairman of Warrington and Halton Hospitals Foundation Trust.

This blog is written in response to Clore Social Leadership’s reports about third sector leadership development. Read report 1 here, and report 2 here.

It has always been tough leading change in a challenging world, but there are an increasing number of factors that support the idea, ‘it’s never been like this before’.

This presents a huge number of paradoxes for people in any leadership position trying to figure their way through this complexity – but I think there are added layers for those leading social change.

For despite the millions of words written and advice offered by gurus and consultants, there are no tailor made solutions. Each person (leader) and each organisation is unique; there is no unilinear solution to change.

Nevertheless, I think it is helpful to play around with some of the paradoxes of modern leadership – I talk about three here - if nothing else to provide a sanity check.

First, and I think most significant, is the paradox of the ordinary versus the extraordinary.

What I mean by this is that the last twenty or so years has seen the evolution of a much more technocratic, engineered approach to people management and organisational development. Whilst, in many respects this is vital and positive, the approach has also resulted a complex and vast set of expectations of leaders, wrapped up in the language of competences, values, emotional intelligence and so on. Each dimension is inarguable its own right, but collectively they represent a huge personal challenge with an anticipation that those who eventually make it ‘to the top’ will be some kind of upgraded version of our species – Human Beings 2.0 if you like. In the charity and social enterprise sector there is the added aspect of judgement around the ethical and moral compass of the leaders concerned.

The paradox, though, is that the majority of those leaders don’t ‘feel’ extraordinary – they just see themselves as ‘normal’ with all the insecurities and anxieties everyone else has to deal with.

But this first paradox is further heightened by the second, which is the paradox of the speed in making decisions versus the need for thoughtfulness and reflection.

There was a time - not that many years ago – when the decisions of leaders took time firstly even to be noticed, then to filter through an organisation and have an impact. That is clearly no longer the case as the immediacy of communication pervades every dimension of life (closely linked, of course, to social media).

The paradox here, though, is that figuring out solutions to the wicked problems we face requires time and more considered analysis than the 140 characters available on Twitter. Yet that thinking space and time is more compressed now than ever before. In fact, it’s virtually disappeared.

And, as if that wasn’t enough to contend with, the third paradox kicks in.

So, this is the paradox of the clamour for rapid and transparent decision making – only possible by using instinct and intuition (often built upon experience), but against the backdrop of a society or constituency seeking to apportion blame for anything that goes wrong.

By definition, real innovation (the disruptive kind we need to generate social change) is unlikely to have a strong evidence base of its potential success. If it did, it would be improvement not innovation. The point here is that innovation is more about courage and a leap of faith – the difference being now that every aspect of that leap will be visible and open to the analysis of everyone and ‘there’ on the Internet forever more.

So, where does this leave leaders going forward?

As I have indicated, there are no answers to these paradoxes and there are many other paradoxes that could be considered.

The best leaders, therefore, don’t agonise about trying to be superhuman or find elusive answers.

Instead, they use their ‘ordinariness’ as an asset to engage people at all levels and they are savvy enough to join or create their own leadership networks and safe spaces to experiment. But, most of all, they understand the need to invest in their own learning and personal development because if one thing is certain, it is that the world will continue on its change trajectory which will result in more, rather than less, ambiguity and complexity.

We are keen to hear your views about this blog and our reports either by submitting blog ideas for Leaders Now, commenting below or joining the conversation on Twitter @CloreSocial. You can contact Steve on Twitter @gmccfo.

Tags:  challenges  charitysector  culture  opportunity  paradox  research 

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Homelessness: Lessons from the US

Posted By Clore Social Leadership, 26 August 2016
Updated: 14 October 2020
Lígia Teixeira is Head of Research and Evaluation at Crisis, and our 2016 specialist housing and homelessness Fellow, supported by the Oak Foundation.

Last week’s long awaited report from the Communities and Local Government Committee makes a number pertinent observations, including a call for a new Government strategy. Against a background of rising homelessness in most parts of England, the time is right to consider where we go from here and to look elsewhere for inspiration. There is much to learn from the United States.

Proportionately homelessness is a much bigger problem in the US and the phenomenon began in the 1980s with growth in homelessness that had not been seen since the Great Depression. On a single night in January 2015, 564,708 people were experiencing homelessness. Evictions are a huge social issue and the criminalisation of homeless people is a widespread problem.

In 2000 the National Alliance to End Homelessness (the Alliance) published A Plan, Not a Dream: How to End Homelessness in Ten Years (NAEH, 2000) . It boldly argued that homelessness, which at the time was seen as an intractable social problem, could be ended. It laid out a path forward that employed data, prioritised prevention and permanent housing solutions, and encouraged the engagement of mainstream systems.

The release of the plan instigated a shift in the debate, the movement gained momentum and the issue quickly rose up the political agenda, even becoming a bi-partisan issue. Over time a movement to end homelessness emerged, with sense of shared commitment and of collaboration.

For over a decade now the number of people experiencing homelessness across the United States has been declining, and this was the case even throughout the recession (between 2007 and 2012 the number of chronically homeless people dropped by 19%). The job is far from complete, but for the first time since the 1970s the eradication of homelessness is a real possibility.

So what’s missing here in the UK? What can we learn from what is currently happening in the United States?

Five clear lessons have emerged from the US:

  1. A grand vision, and a willingness to ask difficult questions. The Alliance’s Ten Year Plan challenged perceived wisdom and triggered a cultural shift in the sector. The Bush and Obama Administrations built on the success of the revolutionary campaign, creating a Federal Strategy for Ending Homelessness, thus embracing the movement and accelerating progress.
  2. Collective commitment. A shared sense of commitment and collaboration is key and often wanting in the UK. At the Alliance’s annual conference in Washington DC a couple of weeks ago, Shaun Donovan - who until recently was Obama's Secretary of the U.S. Department of Housing and Urban Development (HUD) - compared the fight to end homelessness to the moon landing:


‘Together we launched out on moonshot on homelessness. And look how far we’ve come - nearly 30 cities and states have ended veteran homelessness. … Now many of you may say we still have a long way to go. And you’re right. But let’s not forget that we didn’t get to the moon overnight. That journey took three presidents and 21 space flights. Back then the New York Times described the moon landing as ‘the realisation of centuries of dreams, the fulfilment of a decade of striving, a triumph of modern technology and personal courage, the most dramatic demonstration of what we can do if we apply our minds and resources with single-minded determination. And that’s why everyone in this room is so vital to our effort: your dreams, your striving, your courage, your determination’.

  1. Measurable outcomes. From the start the Obama Administration in particular has focused on unlocking data and evidence to identify and implement effective strategies, so they could do more of what works and less of what does not. The problem at stake also needs to be well defined and the role of the homelessness sector within it. So for instance a more comprehensive view of homelessness prevention should place the onus of keeping people housed on mainstream services tasked with taking care of vulnerable groups. This requires better engagement with the education, social care, criminal justice, and health and mental health systems to prevent people being supported by them becoming homeless. Crucially, the homelessness sector to try to fill in the gaps as it could do more harm than good.
  2. Invest in solutions that have been proven to work. The George W. Bush Administration revolutionised how homelessness was dealt with the US - whatever the cause of homelessness, the solution is… a home. The idea was pioneered by New York University psychiatrist Sam Tsemberis: ‘Housing First’ turned conventional wisdom on its head. Despite the sceptics evidence prevailed - Housing First worked from the start and it worked fast. Ever since the early 2000s efforts have increasingly shifted to a focus on permanent housing solutions, such as permanent supportive housing and rapid re-housing. Since 2007 permanent supportive housing capacity has grown 69 percent.
  3. Broadening leadership. A plan or data is only good as the people that drive it forward. The turn towards a Housing First approach during the Bush Administration might not have happened had it not been for the then homelessness czar, Philip Mangano, who doggedly pursued the idea despite initial resistance and sector interests (the new approach threatened jobs and budgets across the country). In 2003, the US Conference of Mayors adopted a resolution in response to a call from Mangano - then at the helm of the US Interagency Council on Homelessness - who challenged 100 cities to initiate ten year plans to end chronic homelessness. By 2004, about 100 had initiated planning efforts and, by 2006, ninety ten-year plans to end homelessness were complete. Strong leadership is however needed at all levels, from front line work, managers and chief executive and trustees level.

The CLG report is right to call for a new Government strategy, and to call for a change in legislation to prevent homelessness, but the lessons from the US point us towards much higher ambitions. It is time for UK politicians to step up to their example.

This blog was originally posted on the Crisis website. You can apply for the 2017 Fellowship here - deadline 5 September 2016.

Tags:  casestudy  challenges  fellow  homelessness  opportunity  research 

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Leadership matters: provoking debate

Posted By Clore Social Leadership, 02 August 2016
Updated: 14 October 2020
Leadership matters. This is the first line taken from our new report Leadership Development in the Third Sector: Learning Lessons.

We all know that leadership in the sector is important, but what really matters is leadership that can navigate through choppy waters while simultaneously capitalising on new opportunities. Sounds relatively straightforward, but it isn’t. This is because social sector leadership has to achieve the above while catering to a wide network of stakeholders, such as the government, private sector, volunteers and beneficiaries to name but a few, and do so in adherence with good governance. Today’s sector leaders are required to have a complex toolkit of skills at their fingertips to respond quickly to the demands being asked of them. But in these fast paced times leaders are often spinning too many plates to engage thoughtfully in how both they, and their staff, can become better leaders.

I have now been at Clore Social Leadership for exactly one year. During this time I have immersed myself in the world of leadership development, meeting with a wide range of CEOs, trustees and managers to understand their organisation’s leadership needs. Digesting all I’ve learned one clear message resounds: leadership development does indeed matter, but overall the sector doesn’t want to pay for it.

In these times of political uncertainty and austerity I can, to an extent, understand such reticence. Yet no one can deny that the sector is in the midst of some huge challenges, so good leadership is more important now than ever before. We know that leadership - and by this I mean leaders on all levels, not just CEOs - is imperative to ensure organisations are well run to effectively serve beneficiaries and the wider community. Leadership development improves productivity by 23%, but this requires an investment of time, finance and resources. It is therefore incumbent on the entire sector to come together to help find new ways of identifying and developing the next generation of leaders to make their organisations even more effective and create lasting social change.

To get under the skin of this, we are examining 21st century social leadership in a series of reports that analyse leadership development in the sector. We hope these reports will provoke further debates while also generating new ideas and solutions. What’s clear from our first report is that lessons can be learned from the past; wholly discounting previous attempts to systemise third sector leadership development is unwise, akin to throwing the baby out with the bathwater. We can also learn from other sectors’ attempts to build leadership development practices, like the NHS Leadership Academy the National College for Teaching and Leadership, in addition to examining practices from our overseas counterparts. It’s interesting to note that they all share similar challenges as our sector, including the need for further investment alongside structured leadership development offerings.

Casting a critical eye on the past and wider sectors invites further questions which our subsequent reports will seek to answer such as: what is the right ‘ecosystem’ for leadership development in our sector? How can we sustain this in the future? What new solutions might Clore Social Leadership create and deliver, and might partnerships be the way forward?

Please read the full report here.

We encourage your feedback about this, and our upcoming reports. You can share your views and comments below, on Twitter or even contribute an opinion piece to our Leaders Now blog.

Tags:  casestudy  culture  opportunity  research  scale  skills 

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Trust in the social sector: public perception or reality?

Posted By Clore Social Leadership, 28 June 2016
Updated: 14 October 2020
Perception versus reality is a poignant theme which many of us have been grappling with since the aftermath of the EU referendum. Do the referendum results illustrate the country’s real wish to leave the EU, or are we in the mire of a bigger, societal disconnection with how the public wants real change in the face of austerity and social inequality?

The Charity Commission has just published their report, Public Trust and Confidence in Charities, which shows that public trust in the sector is at an all-time low having dropped by 10%. The report is a powerful read, but as I reflect on these findings I can’t help but wonder - is this perception or reality? And if we are to regain public trust, what does the sector need to do to make this a reality so that we can collectively climb out of this chasm of distrust?

There’s no doubt that the sector has faced a huge number of challenges, and it’s clear that the various media revelations and fundraising issues have dented the public’s view of the sector. However, the public also knows how vital charities are with 93% of the report’s respondents recognising that charities play a significant role in society. Increasingly, charities are taking up the fallout from government cutbacks to provide support to local communities across the nation.

Now, more than ever, charity sector leadership is imperative to ensure we deliver the support the public truly needs as we steer our way through these unpredictable times. Based on our experience of running the Fellowship programme for eight years, we know that leaders don’t get the support they need. Here are some ideas to help make public trust in charities become more of a reality:

  1. Invest in leadership development: There are countless examples of excellent leaders in the sector – from junior to senior leaders. They have the ability to lead their organisations and teams, but like everyone, their leadership skills need to continuously develop. Research shows that leadership development increases performance output by 23% , so investment in leadership training is a vital.
  2. Find your peers: Being a leader can be lonely job; this is one of the main complaints I hear from sector leaders. With this in mind, I strongly recommend that leaders develop peer groups where they can go for support and advice, and hopefully find innovative ways to collaborate.
  3. Speak up: Charity leaders need to feel empowered to speak up for themselves and think hard about their organisation’s messages and purpose to ensure they’re truly serving their beneficiaries. We must stand for what we think is morally right – if not us, then who?
  4. Collaborate: Together we have to mend society rather than allow the sector to continually fragment. I believe that most people who work in this sector do so because they want to make a difference, so let’s work together to make this happen.


Our country’s leadership is in a state of extreme upheaval where it seems as though there is no trust or cohesiveness within the major political parties. The Charity Commission’s report is a reminder to us to take positive action to rebuild trust, and strong leadership will help show the way.

Read the full report here.

Tags:  casestudy  challenges  culture  research  skills  trust 

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