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Communities of Influence
Improving Healthcare Through Conversations and Connections
Alison Donaldson
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eBook - ePub
Communities of Influence
Improving Healthcare Through Conversations and Connections
Alison Donaldson
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About This Book
Dedicated and hard-working staff at all levels of large healthcare organisations can be frustrated by a perceived inability to influence healthcare priorities. One way of enabling such practitioners to shape and improve services is to bring them together in 'communities of influence'. These are informal groups or networks of committed people who meet regularly to share experiences, develop a collective voice and influence policy and practice at local and national levels. Such 'bottom-up' approaches to change can complement the more conventional management mechanisms widely employed today. Communities of Influence tells the story of how a prominent UK non-profit organisation (Macmillan Cancer Support) has engaged both professionals and patients over the past two decades to improve cancer care. It will stimulate managers and practitioners alike to develop their capacity to work through networks, relationships and conversations in pursuing their objectives. This book will appeal to clinicians and managers responsible for service improvement, as well as public servants, researchers and educators interested in management and organisational change. At a time when the 'big society' is the policy idea of the day, this book illustrates what can be achieved when communities of practice become communities of influence. In so doing, the authors offer a timely counterpoint to believers in command and control and rampant competition by stressing the critical role of networks and relationships. The ideas they discuss are at once simple and complex and have the potential to be revolutionary when taken forward in the right hands. Professor Chris Ham, Chief Executive of The King's Fund This wonderful book describes how a creative, problem-solving organisation can be encouraged to start, grow and flourish. The result is a text that could act as a guide for 21st century healthcare, one of the key books for an era in which it will be recognised that new solutions are needed for the problems we face. From the foreword by Sir Muir Gray This book is a welcome antidote to the usual approaches to improving healthcare which take the form of endlessly changing organisational structures and relentless monitoring, often with dubious consequences. It presents an alternative, holding out the prospect of gradually accumulating changes in the actual work of those delivering healthcare in a complex environment. Professor Ralph Stacey, Complexity Research Group, University of Hertfordshire
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CHAPTER 1
The power of the collective voice
How a charity known for its nurses came to work with general practitioners
OVERVIEW
To understand how the idea of communities of influence came about, we need to trace back to what was happening in the 1990s in the UK. Our story follows two parallel developments: in one, a charity best known for its nurses started working with doctors and managed to develop a nationwide ‘GP community’ dedicated to improving cancer care; meanwhile, the UK was experiencing a surge in patient involvement, and the insights from some research into self-help groups created by cancer patients provided some of the inspiration for working with groups of doctors.
It was only much later, in 2008, that we found ourselves coining the phrase ‘communities of influence’. What has become apparent is that this way of working through people in groups offers an important opportunity to anybody seeking to improve services in the health sector and beyond.
The main sponsor and funder of the work described in this book is a charitable organisation that is a household name in the UK – Macmillan Cancer Support (referred to throughout this book as ‘the sponsoring organisation’ or ‘the funding organisation’). Founded back in 1911 as a ‘society for prevention and relief of cancer’, Macmillan subsequently came to be associated particularly with its ‘Macmillan nurses’, the first of whom were appointed in 1975 to help patients cope with the symptoms associated with cancer and its treatment. At the time of writing there were more than 3000 Macmillan nurses across the UK. These nursing posts are funded for three years by Macmillan, after which the NHS typically takes on their funding. For patients, Macmillan nurses are free of charge and are ‘a valued and trusted source of expert information, advice and support’.1
WHY A VOLUNTARY ORGANISATION CHOSE TO WORK WITH DOCTORS
The roots of the Macmillan GP story go back to the 1970s and 1980s, when the hospice movement was growing in the UK. Around this time, it became clear that GPs (family doctors) were struggling to provide cancer patients with the care they needed outside hospital. It was hard for them to develop and maintain the necessary skills, given that they had many other competing work commitments. Cancer had come to be seen as a specialist area involving chemotherapy, radiotherapy and surgery, and even palliative care itself seemed to be turning into another medical specialty. Often GPs felt excluded from the care of dying patients. As one GP who played a key part in this story told us: ‘It was almost taken out of your hands’.
In 1989, Macmillan therefore approached the body responsible for training GPs, the Royal College of General Practitioners (RCGP), to see what could be done to engage GPs in improving the experience of people affected by cancer. The individual who fielded Macmillan’s enquiry was himself a GP whose personal experience had given him a keen sense of what was needed:
My father’s mother had died of stomach cancer when he was 17 and the story he told me of how she died wasn’t pleasant. So whenever I managed a dying patient, I did my very best. And there were several occasions when I couldn’t do my very best because I didn’t know how to; I didn’t have enough knowledge or experience…. So I said to myself, ‘I’ve got to do something about learning for myself and changing things’. (Ivan Cox)
He explained how a new approach to educating GPs emerged:
Jennifer Raiman (Macmillan’s Medical Services Director) had done some research on GPs, which found that they were pretty awful at palliative care. She came and challenged the RCGP, and the chairman passed her letter on to me. So in late 1989 we all sat down together and asked ‘What are we going to do about this?’, and there were subsequent meetings through January–February 1990 (as with all these things, nothing ever comes of one meeting). (Ivan Cox)
This description of change emerging through a series of specific conversations is very pertinent to our story, because it reflects one of our fundamental premises –namely that change emerges from people talking to each other (conversation or dialogue), not just from plans and programmes. It took another two years of meetings and written proposals before all the parties concerned were ready to act. But finally, in 1992, the RCGP General Practice Palliative Care Facilitator Project was launched. In essence, this offered ‘protected time’ (funded by Macmillan) to six GPs with experience of or an interest in palliative care, releasing them from their clinical responsibilities typically for one day a week. These individuals were based in different parts of the UK and remained practising GPs employed by the NHS, but they could use their protected time to develop their own skills, raise awareness about cancer and palliative care, and provide education, advice and support for other GPs. In addition, they could take steps to improve collaboration with hospitals and specialist palliative care providers (e.g. local hospices). The GPs chosen were known as Macmillan GP Facilitators, but throughout this book we refer to them simply as ‘Macmillan GPs’.
It was during these early years that the ‘practice visit’ became established, whereby Macmillan GPs travelled around discussing palliative and supportive care with primary care teams in their area. They also developed educational material on controlling symptoms and communicating with patients, and they helped compile cancer and palliative care registers and directories of local services.2 Following the pilot phase, in 1994 Macmillan and the Department of Health agreed to ‘roll out’ the programme by establishing GP Facilitators across the UK.
As the community began to grow, Jennifer Raiman argued that Macmillan should also appoint ‘GP Advisors’ (GPAs), who would work closely with the funding organisation and keep in touch with the growing number of GP Facilitators on the ground. The idea was that this would increase Macmillan’s ability to influence the national debate on cancer care. In 1994, following further discussions with the RCGP, two Macmillan GP Advisors were appointed (David Millar and Ivan Cox). Their funding covered two days a week each plus administrative support. For the next five years, they travelled the UK recruiting and educating Macmillan GPs.
The GPs were ‘Macmillan-badged’. After their Macmillan-funded protected time came to an end (typically it lasted three years), many found local funding to continue the work, but they continued to refer to themselves as ‘Macmillan GPs’ and remained connected with the charity and its GP community.
Early evaluations of the Macmillan GP community
Early evaluations gave a sense of the wide-ranging activities pursued by Macmillan GPs in the first decade. One study showed that activity reflected different local contexts and preferences. Much was educational, including courses on topics like ‘basics of palliative care’ and multidisciplinary meetings on ‘breaking bad news’. A key element was visits to other practices, enabling Macmillan GPs to hear about problems faced by their peers and to help them find solutions. Networking with fellow professionals and working on guidelines were also common.3
Moreover, relationships between the GPs and their specialist palliative care colleagues had improved, making it easier for GPs to access specialist knowledge. This ‘bridge-building’ was seen as crucial, because one of the main barriers to continuity and quality of care had been poor relationships between GPs and their colleagues in hospitals.4
Another evaluation, undertaken in Wales between 1999 and 2002, found that each of the 17 Macmillan GPs interviewed ‘had added substantially to their knowledge and experience of palliative care and palliative care education, the majority to the extent of successfully completing a university diploma in palliative medicine’.5 Moreover, the very existence of Macmillan palliative care GPs in Wales ‘had brought the issue of palliative care into the spotlight’.6
An article published by two Macmillan GPs in the journal Palliative Care Today in 2001 gave tangible examples of the ripple effects of the community, e.g. a debriefing for a troubled district nurse following the care of a dying child; round-table discussions with two neighbouring hospices who had not talked for 10 years; an increase in appropriate referrals from practices; and gentle support given to a burnt-out GP encountered on a routine visit.7
Macmillan’s sponsorship enabled the Macmillan GPs to meet one another not just through practice visits but also at community meetings (they gathered regularly as a group from the beginning), where they could share stories, problems and solutions with one other, develop collaborative projects and work out how to influence healthcare policy. These ways of working were in a sense natural to doctors – it was they themselves who pointed out that ‘GPs only listen to other GPs’.
HOW PATIENT GROUPS INSPIRED THE IDEA OF THE ‘COLLECTIVE VOICE’
Meanwhile, the early 1990s was also an exciting time for self-help groups and patient involvement.8 One particular hive of activity emerged at a cancer centre in a hospital in southeast England, and as we shall see, the insights that emerged about developing a ‘collective voice’ provided important inspiration for Macmillan’s continuing work with doctors.
‘It all began with a row’
One day in the early 1990s, two women met at an event at the Royal Society of Medicine in London, where they were both speakers. One was Jane Maher (a consultant oncologist and co-author of this book), the other was Jane Bradburn, an expert on self-help groups. (For sake of brevity, we will refer to them in this chapter as Jane M and Jane B.) This is how Jane B recalled the encounter with Jane M:
I remember quite clearly a person came up to me, and I hadn’t experienced her before; she came full-on and said ‘It’s all very well, these self-help groups, but you don’t know what they might be doing. You need somebody to check them out’. (Jane Bradburn)
‘It’s not like that,’ Jane B retorted, ‘the groups set themselves up to meet their own needs’. A lively discussion followed and eventually, Jane M was convinced enough to say ‘I think I need to employ you as a patient advocate – come and show me that self-help groups are not full of middle-class women with too much time on their hands’. She wanted to find out why some of her patients were telling her they found self-help groups helpful.
Following this encounter, Jane B embarked on a three-month review of all the self-help groups in the catchment area of the cancer centre at the Mount Vernon Hospital in Hertfordshire, England – 18 groups in total.9 As well as establishing what it was about these groups that patients found helpful, the aim was to find out why professionals were not engaging with them. The first product of this research was a directory of self-help groups in the area. The various self-help groups wrote their own entries, so it was very much their creation. Furthermore, all who wanted to be included in the directory were included, without any vetting, an unusual move at the time.
Next, the two Janes published their findings in an article called ‘Community-based self-help groups: an undervalued resource’, consciously choosing a peer-reviewed journal (Clinical Oncology) so that health professionals would be more likely to take it seriously.10 This proved reasonably straightforward because, apart from the fact that Jane M was herself an oncologist, the research addressed the sort of questio...