The starting conditions for a Citizens’ Health Assembly will largely decide how it develops. Get these right and the Assembly could make a constructive contribution. Get them wrong and it could be irrelevant or even damaging.
This article suggests three starting conditions which could make it develop effectively, through a direct relationship with Parliament; by giving it a specific task such as the NHS Mandate and Call to Action; and by starting with local and regional forums.
To test these or any other options it is worth running simulations and pilots to test different starting conditions and then create an iterative process which allows for learning and change as the Assembly develops. As far as possible simulations should involve representatives of the whole system, with stakeholders playing themselves in accelerated scenarios led by skilled facilitators to explore what might happen. As a second best, here are a few thought experiments.
Imagine three different scenarios in which the Assembly is either Modest (or Marginal), Angry or Deliberative.
In the Modest scenario, the Assembly process mainly attracts people currently involved with Patient Participation Groups, HealthWatch, Expert Patients, Health & Wellbeing Boards, National Voices and existing community health initiatives. It plays a useful role in strengthening the voice of service users, carers, their families, voluntary organisations and community groups, but has much less influence than health professionals, clinical commissioners or the Department of Health. Bearing in mind that Local Involvement Networks (LINks) had an annual budget of over £80m and involved relatively few people, that budgets for HealthWatch and patient participation are being squeezed, and that the Assembly is unlikely to have sufficient resources to engage people at a local level, this is the most likely scenario.
In the Angry scenario the Assembly attracts people active in campaigns against service closures (like Lewisham and Leeds), service failings (like Mid-Staffs), cuts and privatisation. It becomes the focus of campaigns on social care, disability, mental illness and the availability of specific drugs or treatments for different conditions, as well as the National Health Action Party. It challenges the Board and the Government to increase funding, stop A&E and hospital closures, and stop competitive commissioning. Given that funding is tight, demand is rising and services are likely to be reconfigured as a result of decisions by Clinical Commissioning Groups, and that more shocking cases of mistreatment of patients will be revealed as a result of increased inspection and transparency, this scenario is a possibility.
In the Deliberative scenario, existing networks for patient and public involvement and trained community organisers or connectors reach out to engage people in online forums and local meetings in the Assembly process of Discovery and Dialogue. Participation is more inclusive and diverse than the other scenarios. This process identifies strategic issues and also elects or nominates people to regional and national forums. Panels of representatives consider the best available evidence on complex issues and make recommendations to the full Assembly meeting. The Assembly is challenging and innovative, but it takes time to develop. Given the effort required this is the least likely scenario, but offers most potential for civil society to have an effective voice in the future of health and social care.
These imaginary scenarios highlights some of the issues involved in setting up an Assembly and raises questions about the preconditions for success, such as:
• How to build on existing public and patient involvement mechanisms, and encourage them to reach out and engage more people?
• What if the Assembly becomes a focus of public anger?
• How can a more inclusive, deliberative process be developed without being prematurely shut down?
Relationships with Parliament
In my view all these can be addressed by creating a direct relationship between the Assembly and Parliament, for the following three reasons.
First, Parliament is the sovereign body for the Health Service and has powers to scrutinise, intervene or restructure all or part of the NHS at any time. Any Citizens Assembly will have much less influence on NHS England than Ministers, Parliament or health professionals, particularly at the start. It will quickly be abolished by Ministers if it challenges Government policy too strongly (the “Angry” scenario), or is seen as ineffective and an unnecessary cost. It could survive if it has a strong local base and broad public support, but the Government is unlikely to give it time to develop an independent base. This makes the relationship with Parliament critical, because Parliament is the only body which could protect an Assembly from premature abolition.
Second, local and regional Assembly meetings could give MPs a better overview of what’s happening in health and how people feel about it. This could be critically important for the health service, because the new NHS structure gives MPs greater freedom and incentives to act as consumer watch-dogs for their constituents, defending services threatened by closure (as in Leeds or Lewisham), demanding access to specific drugs or services, or seeking redress, regulation and inspection in response to failures like Mid-Staffs.
Since demand for health care is rising and money is tight, difficult decisions about services are unavoidable. Health services have high fixed costs and narrow margins, so they are highly vulnerable to small changes in revenue as a result of decisions by Clinical Commissioning Groups. Conflicts over service closures and access to care are therefore inevitable. These will be handled by the Independent Reconfiguration Panel (IRP), who advises the Secretary of State. Contentious cases will come into the political arena very fast. Stronger advocacy by MPs is likely to make reorganisation of services even more difficult. It could marginalise provision for mental health, public health, social care and health promotion even more, since their political champions are less powerful. But big battles over hospitals will give politicians opportunities to earn credit with voters in the run up to the 2015 election.
Local and regional Citizens Health Assemblies could put arguments over specific services into a wider context and create a public space for a more sustained, deliberative debate about different options, interests and for health. If MPs were directly involved, they would hear from a wider range of constituents. Assemblies would also address the wider factors contributing to health, thus putting decisions about services into context.
Involvement in the Assembly process will give MPs much greater depth and breadth of views about what is needed for health when they debate the NHS Mandate, budget or other strategic issues laid before Parliament.
MPs would benefit from getting considered views from a wide range of civil society, while the link with Parliament would give people participating in the Assembly process more confidence that their voices will be heard. The Assembly would then become part of our democratic system, connecting people with Parliament to strengthen oversight of the executive, along with HealthWatch, Patient Participation Groups and community health initiatives. By rooting the Assembly in local initiatives and connecting local communities to decision-making in Parliament, it can gain the public support and legitimacy needed to address the complex health needs of the country.
Third, and perhaps most important, a relationship with MPs and Parliament would show people who get involved in the Assembly that their voice will be heard as part of the democratic accountability for health and inform decisions over policy and funding. A direct relationship with Parliament gives the Assembly much more status than a consultation exercise or strategic partnership at the whim of Ministers.
How should the Assembly relate to Members of Parliament?
The question then arises, what kind of relationship could there be between the Citizens Assembly and MPs? If the Assembly is effective, it will have an impact on MPs whatever happens. The Assembly may refer issues to the Health Select Committee. MPs may even see it as a rival to their democratic oversight of the NHS.
Three options for the relationship between are
1. Leave it to chance and let it evolve;
2. Ask MPs to take a formal role in the Assembly, such as chairing meetings of the Assembly or Panels on a non-partisan basis;
3. Get a commitment from MPs to receive a report or recommendations from the Assembly through the Health Select Committee.
A focus for the Assembly: the Mandate and Call to Action
The issues on which the Assembly focuses at the start will have a big influence on who gets involved and how it develops. They will also shape relationships with NHS England, Parliament and the Government. The paradox is that to get public attention and get people involved it needs controversy and conflict, but too much controversy and the Government could pull the plug.
So if it develops according to the Modest scenario, it will bring more coherence to existing forms of public and patient participation and raise the profile of issues such as consumer rights for health and social care, complaints systems, the importance of unpaid care, the funding challenge and integrated, person-centred care, as identified by HealthWatch and National Voices, but is unlikely to make waves.
If it develops according to the Angry scenario, raising issues such as reorganisation, spending, privatisation or provision for specific groups, it will get public attention, but could be closed down, particularly since these could be election issues.
As a citizen-led initiative the Assembly should clearly be able to develop and set its own agenda, but how this is framed will influence who takes part and how the agenda is set. One way to connect the people’s agenda with the public agenda is to address the Call to Action and NHS Mandate. NHSE and CCGs are
The Board of NHS England is accountable to Parliament through the Secretary of State for delivery of a mandate published in November 2012 which “provides democratic legitimacy for the work of the Board. It will be updated annually and laid before Parliament.” (§9.5) The mandate was refreshed in 2013, with the outcome of consultations to be published shortly.
The Secretary of State will “assess annually the success of the Board against the progress it makes against this mandate.” (§9.1) “To ensure that our assessment is fair, the Government will invite feedback from CCGs, local councils, patients and any other people and organisations that have a view.” (§9.4)
The Citizens Assembly could play a key role in this assessment process and get recognition by Ministers and Parliament. This would also make it less easy to dismiss and give it time to develop and provide a framework for other issues raised through the Assembly process. These are likely to include a blend of the ‘Modest’ and ‘Angry’ scenarios. The important thing is to let these issues emerge through public engagement at a local and regional level.
Building the Assembly bottom-up
People relate to their local area and services. People get involved through relationships and the associations to which they belong. Relatively few people are motivated through issues or abstract invitations to take part. Health issues also vary greatly between areas, depending on demography, incomes, employment and other factors, so people need to be engaged first at a local level, through people the know and trust. So it makes more sense to involve people through their local associations, networks and services, as was said at the first design-day for the Assembly. HealthWatch and other patient involvement initiatives already have local networks, as do national civil society organisations such as Citizens UK, Community Matters, Locality, NAVCA, National Voices, the NHS Alliance, Voices4Change England, the WEA, Women’s Institute and many others. With relatively little additional funding, these organisations could engage a much wider constituency in the Assembly process.
It is therefore important to start with face-to-face meetings at a local level, building up to regional and national Assembly. CCGs, Health and Wellbeing boards, local authorities and other local partners are currently running local engagement events to gather views on the NHS Call to Action. These events should be part of the process of developing the Assembly.
A Citizens Health Assembly is a process, not a thing, which will only work if people are engaged through other people. This means working with and through existing networks of civil society and health participation. The Assembly should be built bottom-up, through conversations about issues that matter to people as well as the NHS Call to Action and annual reviews of the Mandate. It is also more likely to develop an effective and relevant voice if it has a formal relationship with Parliament, as a means of deepening our democracy. Without this it will be little more than another consultative mechanism.