Better Health in Harder Times

Active Citizens and Innovation on the Frontline

Davies, Celia, Walmsley, Jan

• Publisher: Policy Press
• Year: 2012
• ISBN:
  9781447308683
• Edition: 1
• Topic: Medicine
• Subtopic: Health Policy

For years the NHS has been the most trusted of public institutions and the envy of many around the world. But today there is turmoil. Painful shortcomings in clinical care and patient experience, together with funding cuts, threaten to dig deep into service levels and standards. Seventy years of technically advanced medicine provided free to the population has produced a widespread perception of patients as passive consumers of health care. This book explores how we may renew for our times the collective compact that created our public services in the 1940s. Voices from service users and service providers show how this can be done. They offer testimony of what goes wrong and what can be put right when working together becomes the norm. Sections explore new ways of living and working with long-term conditions, more meaningful and effective approaches to service redesign, use of information technology, leadership, co-production and creating and accounting for quality. Accessible to a wide range of readers, with short, accessible contributions, this is a book to provoke and inspire.

SECTION 1

What business are we really in? Managing and self-managing well-being

Introduction

Ask almost anyone in the UK about the system of healthcare. They will talk of the NHS but the image that comes to mind will probably be the hospital. Episodes of hospital healthcare have an immense and often life-changing significance. Of course they loom large. But the business of creating and maintaining better health and well-being goes much wider, as the contributions to this first section of the book show.

The section opens with three powerful illustrations of ways in which programmes (national and local, inside and outside the healthcare service framework) can transform both the lives of those who use the services they provide and the relations they have with service providers. Nan Carle brings together issues of labelling people (as ‘service recipients’) with the practicalities of budget control and monitoring, and illustrates the depth of the change that can occur as people are coached in new roles. Jim Phillips reflects on the nature and the effects of the Expert Patients’ Programme – a government-led initiative mobilising the knowledge and experience of people with long-term conditions in order to empower their peers. The ‘mainstreaming’ of the programme has had intended and unintended consequences. There is a powerful message in these two contributions about the value of engagement for both service users and service providers. Angela Flux takes the same idea into a different context: health promotion. She describes a 20-year series of inspiring, imaginative and fun initiatives that have energised and mobilised groups in a geographical community to engage with their own health and well-being. She goes further, however, laying out factors that matter to making a success of them.

Changing the language that service providers employ is one factor that matters. Jan Walmsley takes a closer look. Her chapter explores how the words we use shape how we behave, and how deliberately changing those words can be a step to changing practice. It was activist commitment and vision, she points out, that brought ‘the social model of disability’ into the repertoire. Perhaps the language of this model might help to change the relationships between people with long-term conditions and services so that they are supported as people, not ‘patients’.

Approaching the ‘identity’ dimension of activism from another direction, Mike Hales stops us short, wondering about the viability of the idea of being a fully engaged and active citizen in the health sphere. How will it fit with our inner balance for different ones of us? His account prompts reflection on the demands that citizen and service-user engagement makes, and the need to honour the rhythms of daily survival, and the rhythms through which individual people change and grow. The final contributor, Laurie Bryant, became an activist through personal experience of mental distress. He describes the transformation in his life when he discovered the power of partnership.

Editor Ray Flux closes with some reflections. He firmly addresses the title of this section: ‘What business are we in?’ Of course we want to enjoy the fruits of medical innovation and to get treatment when we are ill. But is the NHS a victim of its own success? Have we created a world of passive expectations – a pill for every ill – rather than one where people and their communities are engaged enough to lead in managing their own health and well-being? In all this, what is the role of our health service, and of professionals in and adjunct to the NHS? A basic assumption of this book, explored here, is that if public services reach out effectively to people with long-term conditions and enable them to self-manage, then the forms of co-working and the ‘ways of seeing’ one another that evolve have the potential to renew the tacit contract between publicly funded services, professions and people in the general population. What is currently happening in and around the NHS is a game with high stakes.

1

Money matters! Personal budgets and direct payments

Nan Carle

Alex uses a wheelchair and found he was not allowed to use his personal budget to update his wheelchair to an electric model, but he was able to create a support plan that included a job coach. Alex employed someone from the local Greek centre who understood his interests and cultural sensitivities. With his job coach, Alex created his own freelance training and consulting business. He learned to manage his business affairs and to grow his income. Alex had a good understanding of the personal budget and direct payment system and was able to drive his plan in a way that worked for him. Eventually, he did get an electric wheelchair but it took 18 months to save his money and find other sources of help. He would have been able to work much more efficiently and independently with the wheelchair he needed at the start! His knowledge and drive enabled him to become a taxpayer, and contributor to the wider community. There is no telling what he could have achieved with an earlier easing in regulations.

Gerald had a history of aggression and was not a popular participant at the day centre. With his personal budget and direct payments, he and his circle of support designed a seven-day support plan for a few hours each day. He hired a ‘travel coach’ to help him learn to travel on his own to local shops and leisure facilities. He now participates at local events that interest him, is part of the local economy and is no longer the angry man at the day centre!

Mary Elizabeth is a mother of two young children and had a short-term physical disability that meant she could not move around her house or lift more than 10lbs. It was expected that she would take two years to recover and would not work in this period. After considerable discussion, she was able to use her direct payments for childcare during the day so that she could finish her education. She healed much faster than the two-year prognosis and also finished her degree. She therefore did not need the direct payment for as long as anticipated and was able to move forward in her life with new qualifications for work, and with her family intact.

Each of us has a greater opportunity to pursue our own interests, express love of others, take risks and participate in community affairs when we are in charge of our own money. When others control our finances, it is their interests and concerns that prevail. The development of personal budgets and direct payments is at the very heart of self-directed services in social care.

Personal budgets include direct payments to the person and are managed by selected local authority personnel. Following an assessment of needs, direct payments enable an individual to use the allocated funds to develop a support plan to meet his or her needs. This plan may include selecting staff and using the funds to achieve what is important for one’s own well-being. This approach is a far cry from being ‘placed’ in a service or being grouped with others considered to have a similar need. The examples that opened this chapter illustrate how people have used personal budgets and direct payments to pursue their interests and gain appropriate independence from paid support.

In each of these three examples, there is a sense of personal transformation. Individuals saw changes in relationships to family and friends, to their communities, and to the public system of care. Outcomes mattered most. But while the greatest strength of personal budgets and direct payments is their potential to be used in different ways to meet individual needs, this is also its greatest vulnerability. In our current economic circumstances, the use of public funds is under close scrutiny and issues of accountability and transparency are to the fore. Where it is hard to count ‘outcomes’, it may be difficult to sustain such individualised approaches to expenditure. As a consequence, it will always be important to record how money has been spent and to gather evidence that individuals managing their own budgets can be a more economic option than block contracts and group services.

The transition from the role of ‘service recipient’ to ‘business person’ is at the heart of this transformation, and requires a new personal relationship with money, including knowledge and understanding of income, the consequences of expenditure, and the recording of outcomes. This suggests that besides the financial transaction, there must be some sort of interim coaching that helps people imagine and find their ‘best investment’ of the available resources. This transition is particularly successful when individuals with personal budgets are coached to understand that managing their own money, procuring effective services and demonstrating accountability are a part of the new environment. The accountability aspect to coaching should also help the new business person to record or register what the outcomes – planned and unplanned – have been. For each person, there will need to be a change in expectations and behaviours to demonstrate the new world of personalised budgets.

In addition, both agency-provided services and individual plans funded from personal budgets may fail to realise the hoped-for gains. We have become accustomed to a risk of failure in agency-provided services, and we may need to be similarly willing to ‘fail and learn’ in individual plans funded from personal budgets. Encouraging citizens to plan and procure aspects of their own care must also involve preparing them to understand and share the risks in doing so.

Finally, it is important to reassert that it is often people’s natural support networks that are key to their personal transformation regardless of how the payment systems emerge. This is because the role of government in people’s lives is a matter of continuing debate in Western nations and while they continue to expect individuals, families and their communities to do more, they will generally have relatively broad-brush mechanisms for encouraging or requiring this. Personalising care to maximise individual potential and benefit will happen through drawing people and their networks into closer partnerships.

There remains a huge cultural shift to go beyond our 20th-century over-professionalisation of care. Personal packages of money and supported opportunities to risk and learn may move us across this chasm.

2

Mainstreaming a chronic disease self-management programme – reflections on the NHS Expert Patients’ Programme

Jim Phillips

In July 1999, the government published the White Paper Saving lives: our healthier nation (Department of Health, 1999). In it, the government set out its new vision for improving health and putting citizens at the centre of care. The paper put forward the idea of the expert patient: someone who is empowered to manage their health condition in the wider context of their whole life. It cited examples of good practice by organisations such as Arthritis Care in using lay people to train and support people with a long-term illness to manage their condition and who seemed to benefit themselves from improved health and more effective use of services.

In 2001, the Department of Health published their detailed vision for a programme exploring this phenomenon at scale: The expert patient: a new approach to chronic disease management for the 21st century. This outlined some key underlying principles:

• The expertise of patients themselves is a largely untapped resource in the effective management of chronic disease.
• ‘Expert patients’ must become an integral part of the design and functioning of all local NHS services, not just of a few innovators.
• User-led self-management programmes are the principal route for creating a new generation of expert patients.
• It is the responsibility of the NHS to ensure that these programmes are in place, that they are developed and that they are sustained over the long term.
• New provision must be integrated with the work of other statutory providers such as education and social services.
• All programmes must be firmly rooted in good evidence governing their design and implementation.
• Feedback, evaluation and assessment of outcomes should be a routine part of the operation and development of the programme.

The programme chosen to be evaluated and provided to the NHS was the chronic disease self-management programme (CDSMP) developed by Kate Lorig at Stanford University. The CDSMP comprised six weekly sessions of around 2.5 hours and looked at how to manage the day-to-day impact of chronic disease on a person’s life. The programme was already being used by voluntary organisations in the UK and was unique in its use of lay people to run the courses.

A key element of the course was integration into local support networks. It also acted as an empowerment vehicle: as participants improved their self-confidence and took responsibility for their health, they also began to question paternalistic relationships both with the healthcare team and sometimes the voluntary organisations themselves. For some professionals, this was very challenging and was seen as a threat to their role as the expert.

What effect did a national implementation have?

In 2002, around 100 trainers were taken on by the NHS and tasked with providing training and support to enable all Primary Care Trusts (PCTs) in England to run up to four Expert Patients’ Programmes. This had an immediate effect on voluntary sector organisations, with many choosing to stop their provision altogether. In addition, with such a strong focus on a single model for the intervention, many other self-management programmes were neglected so that while the mass roll-out raised broad awareness, at the same time it may have hindered further development of other approaches.

However, by 2005, many PCTs had begun to integrate the programme into care pathways and the programme was also seen as an effective approach to broader public and patient participation in the NHS: people who had attended courses tended to have a realistic and clear view of how they wanted services to be provided. A common theme expressed was the desire to move into more of a partnership arrangement with care teams, with both sides recognising each other’s expertise and working collaboratively to achieve the best outcomes.

Following the White Paper in 2006 (Department of Health, 2006), the programme was moved to a mainstreaming phase, with a new community interest company (CIC) being funded and set up by the Department of Health. This marked a turning point in the programme, with many PCTs abandoning their own in-house programme and commissioning from the nationally organised CIC. The effect was similar to that in 2002: programmes lost much of their local flavour and integration. Some also argued that externally commissioned courses represented poor value for money, as resources and expertise were external to the local community.

Those organisations that kept programmes integrated in the local community and linked to other community programmes appeared to offer higher social return on their investment. A study that compared the social return on investment of three Expert Patients’ Programme courses (Kennedy and Phillips, 2010) found that the course most specifically targeted and integrated into local service provision showed the highest social return.

Has the Expert Patients’ Programme been a success?

In terms of raising awareness of self-management and the concept of patients being empowered to take a partnership role in managing their health, the answer is probably ‘yes’. Grounding that empowerment in a fairly simple and structured training programme – which is potentially self-sustaining because it identifies and coaches some of its own participants to become trainers – has also been an important development. However, looking over the history of the programme and the amount of public funding it has received, one wonders whether a greater impact could have been achieved if more time had been spent on stakeholder involvement and greater use of co-production methodology.

3

Health promotion – connecting people and place

Angela Flux

Health promotion appears at the forefront of many government proposals in health, particularly those focused on the young. Ye...