House of Commons - Public Administration

Select Committee on Public Administration Written Evidence

Memorandum from Mind (National Association for Mental Health)

Mind is the leading mental health charity in England and Wales, working to create a better life for everyone with experience of mental distress by:

— Advancing the views, needs and ambitions of people with mental health problems

— Challenging discrimination and promoting inclusion

— Influencing policy through campaigning and education

— Inspiring the development of quality services which reflect expressed need and diversity

— Achieving equal rights through campaigning and education.

Our vision is of a society that promotes and protects good mental health for all, and that treats people with experience of mental distress fairly, positively, and with respect.

We provide information and support, campaign to improve policy and attitudes and, in partnership with independent local Mind associations, develop local services.

We do all this to make it possible for people who experience mental distress to live full lives, and play their full part in society.

1. INTRODUCTION

1.1 Mind welcomes the opportunity to submit evidence to the Public Administration Select Committee Inquiry "Public Services: Putting people first". Our response focuses on the involvement of mental health service users in the design and delivery of services. We would welcome a future opportunity for service users with links with Mind to give oral evidence to the Committee about their experiences of consultation and involvement mechanisms.

1.2 Before the 1980s mental health service users were routinely excluded from decision-making processes. A recent article in the journal Mental Health Today explains: "historically, the views of service providers have been the primary, and often the only, consideration. Service recipients were typically deemed incapable of expressing a cogent or meaningful perspective."[5]

1.3 More recently this false and stigmatising mythology has been challenged by an influential service user/survivor movement. There is now widespread recognition of the importance of user involvement, both as a rights and discrimination issue, and as a lever for designing and delivering more effective mental health services.

1.4 A patient-led NHS is central to the prospectus for health service modernisation set out in the Government"s NHS Plan 2000. The National Service Framework for Mental Health 1999 states that services must be shaped by the wishes, preferences and needs of service users if they are to deliver effectively. The Healthcare Commission conducts annual surveys of service user experience of community mental health services and in 2007 will—for the first time—carry out an inpatient survey. In general, "involving service users, survivors and also carers is now seen as an ethical and democratic requirement. The assumption that someone who has never been in the position of using a service can know what it is like to be in that position, or the ways in which services can best help, has been challenged successfully".[6]

1.5 This is not only an ethical and democratic requirement, it has legal force. The Health and Social Care Act 2001 places a statutory duty on Primary Care Trusts (PCTs) to make arrangements to involve and consult service users in planning and delivery. Dedicated service user involvement posts, which already operate in some PCTs, provide an excellent means for ensuring that meaningful service user involvement takes place. The Disability Equality Duty under the Disability Discrimination Act 2005 requires all public authorities to involve service users in the development of disability equality schemes and to work pro-actively to eliminate discrimination from their policies and procedures.

1.6 There has been significant progress on involvement of mental health service users in decisions that shape mental health services and have a profound impact on their lives.

1.7 However, user involvement can still be experienced as tokenistic and ineffective. A 2004 survey for National Institute for Mental Health in England (NIMHE) concluded that the "over-riding view" of user involvement was "it is getting better but could still be improved", and that service user opinions need to be valued and appreciated." This NIMHE survey found "a widespread frustration and disappointment at the apparent lack of impact that involvement was having, and in particular a perception of exclusion from decision-making processes".[7]

1.8 Our experience is that service user involvement in voluntary and community organisations is good, but this offers limited scope to impact on decision-making processes; local involvement in the public sector is more patchy, with significant variations in the extent and quality of user involvement from place to place; at a national level user involvement can still be poor and is too often "tokenistic".

2. Can public services learn from the way that either non-public sector organisations or overseas governments make use of user experience in service delivery and design?

2.1 Voluntary and Community sector organisations such as Mind have considerable experience of involving service users successfully in policy development and service delivery and design, and have well-developed cultures of user involvement which are embedded in their organisational structures and practices.

2.2 Service users have a central role within Mind's mission statement and governance structures. A significant number of Mind's 209 local associations are user-led and many others have a significant proportion of service user trustees. We already work in partnership with statutory organisations, and have long provided a significant proportion of mental health services across England and Wales. Within Mind's framework of quality standards for service delivery, user-led groups are delivering a wide range of high quality and effectively managed services. In addition, Mindlink, Mind's service user network, has over 2,000 members with direct experience of mental distress. Mindlink members are represented on Council of Managment, and there is a Mindlink National Advisory Panel. Mind's Network Support Directorate has responsibility for ensuring that policy development and campaigning activity is shaped by service user networks and local Mind associations. Mind employs a full-time service user involvement officer.

2.3 Mind is often consulted by government departments and other statutory agencies as a voice and platform for service user views and experiences. Our involvement tends to be through subject-specific, time-limited consultations. Consultations typically involve complex strategy documents and invite responses to technical questions. There can be a high volume of consultation work at a given time. It can be difficult to consult service users in a meaningful way.

2.4 Mind believes that there would be merit in conducting a cross-government review of consultation and involvement processes and strategies. We believe that statutory services could increase their effectiveness in engaging service users by working on a more on-going basis with voluntary organisations and networks such as MindLink. This might require additional resources to help to build capacity and facilitate consultation work.

2.5 Mind is concerned about the implications of an increasingly mixed economy in health care provision for service user involvement. The private sector does not have a tradition of stakeholder engagement and will not necessarily be covered by the same rules on patient participation as the public sector.

2.6 This is a particular concern in the light of the Healthcare Commission's (HCC's) State of Healthcare Report 2006.[8] It concluded that thirty 5% of independent mental health establishments failed three or more of the HCC's 32 standards, with 12% failing seven or more. Specifically, 23% of independent mental health establishments failed the standard that required them to have processes for monitoring treatment and care; 19% failed on having processes for recruiting trained and qualified staff; and 17% failed on premises being appropriate for treatment. This is an issue that needs to be addressed as part of the wider debate on increased involvement of the private sector, foundation trusts and new NHS commissioning structures.

2.7 There is much that is encouraging in the development of service user involvement in mental health, and many examples of good practice—notably in the voluntary and community sector. A key lesson is that meaningful user involvement can not be achieved on a "smash and grab" or "quick-in quick-out" basis. It requires long-term commitment to supporting service users; a creative approach to public consultation; the embedding of user involvement in practice and—underpinning all this—a commitment of resources.

2.8 As Brook and Fraser conclude "user involvement and true partnership cannot be achieved on the terms of statutory services, NHS commissioners, government agencies or any other body that seeks to find a quick and easy way to harness users' and survivors' voices. The way forward is to embrace the fact that it will be complicated and it will cost time and money".[9]

3. What role do measures of customer satisfaction have in assessing the standards of public services? How should user views be monitored?

3.1 The notion of customer satisfaction implies a choice of services, and reliable information about options and outcomes. Choices are particularly important in mental health where active participation in recovery processes can help to build self-esteem and a sense of control, as well as increasing confidence in services and treatments.

3.2 Attitudes within mental health services have to change before all service users will be able to exercise meaningful choice. Despite the strides that have been taken on user involvement, people who experience mental distress still often feel that a paternalistic approach is taken and they are not considered able to contribute meaningfully to deciding on their own care and treatment. The rights to choice, self-determination and advocacy need to be recognised as universal principles.

3.3 In 2005 the Healthcare Commission's Annual Report concluded that the NHS

still had a long way to go to achieve a "patient led" service, and that many mental health services fell short of what people needed. It found, for example, that many people detained under the Mental Health Act 1983 said that they did not have their rights explained to them. This report also found that over half (59%) of people on the standard care programme approach (CPA) had not been offered a written copy of their care plan, undermining the entire purpose. And 20% of people felt that they were not treated with dignity and respect by their health professionals.[10]

3.4 Involvement in care planning provides a good example of an area where too many service users are not sufficiently consulted and engaged. The 2006 Mental Health National Patient Survey found that 32% of respondents only understood their care plan to "some extent" and that nine% (which is nearly 1 in 10 people) did not understand their care plans. Twenty five% of service users were not involved in their care plan, 30% were not told who their care co-ordinator was, and only 71% felt able to contact their care co-ordinator if they faced a problem (which means that more than 1 in 4 did not).[11]

3.5 As argued above, service user participation is one of the most important measures of quality in public health and is a legal requirement under the Health and Social Care Act 2001 and Disability Discrimination Act 2005.

3.6 Without investment in mental health services, the notion of customer choice will have limited meaning. People must be aware of the pros and cons of alternative treatments, and evidence based treatment must be available. This is often not the case in mental health where there is an over-reliance on pharmacological interventions, and alternatives are often not discussed. For example, at present the choice for people experiencing mental distress is often not which counsellor to see, or which form of psychological therapy will work best for the individual patient, but whether there is access to any form of therapy, and whether this is achievable within a reasonable time frame. The NHS waiting lists for therapy can be as long as two years. The lack of access to psychological therapies is highlighted in the We Need to Talk campaign that is currently being run by an alliance of mental health charities comprising Mind, Rethink, SCMH, Young Minds and the Mental Health Foundation.[12]

3.7 An obvious way of giving "consumers" of mental health services greater control over service provision is to empower them to make spending decisions of their own. On this model, service users directly buy in services to meet their needs and preferences, rather than being passive recipients of services delivered through statutory agencies.

3.8 The Department of Health is currently working with the Care Services Improvement Partnership (CSIP) and stakeholders on a project to encourage independent living through individual budgets and direct payments. This reflects a Government commitment to increasing choice, independent living and person-centred processes in social care. At a conference in January 2007, Ivan Lewis MP, the Parliamentary Under-Secretary of State for Care Services, said that individual budgets will become "the mainstream of social care over the next ten years".

3.9 The Department of Health website explains: "The aim of a direct payment is to give more flexibility in how services are provided to many individuals who are assessed eligible for social services support. By giving individuals money in lieu of social care services people have greater choice and control over their lives, and are able to make their own decisions about how their care is delivered". Individual budgets are similar to direct payments, with people assessed to establish their social care needs and entitlements and this translated into a single cash amount or "budget". Through consultation with family, friends and support workers (if the person wishes to involve these people), the person will then write a support plan, including how they would like to spend the money and what support they might need. The money is then given to the person, either directly into their bank account, as a service from a Local Authority, or as a mixture of both.

3.10 Mind has been broadly supportive of this approach. Direct payments and individual budgets can promote choice, empowerment, independent living and citizenship—they introduce market-type mechanisms that give service providers a clear incentive to be responsive to their customers. However, take up among mental health service users has been low, in part because of paternalistic attitudes to service users. The Department of Health launched 13 pilot sites for individual budgets in Summer 2006. Initial observations from the pilot are that they are viewed very positively by people using them, but that there is lower take up of individual budgets amongst mental health service users than for other groups (including people with learning difficulties and physical and sensory impairments). The risks and opportunities provided by direct payments and individual budgets need to be further researched and monitored, with particular attention to potential to extend their use among mental health service users as a form of involvement and empowerment.

3.11 In secondary mental health services, users are more concerned about quality of service than quantity. Choice is not meaningful or valuable if it is between poorly delivered services. Mental health services consistently score badly on inspections, are proportionately less well funded than other services and tend to bear the brunt of budget cuts. In 2005 in response to growing concerns about the MRSA bug, the Healthcare Commission sent inspectors to 98 hospitals to report on hospital cleanliness. The worst performing hospitals were not those with busy Accident and Emergency Departments—all of the bottom six hospitals were NHS mental health hospitals.[13]

3.12 The fact that conditions have often been so poor on mental health wards is itself testimony to the limitations of scrutiny, monitoring and complaints procedures within secondary mental health services.

3.13 Customer satisfaction is a term associated with the point of delivery. But choice cannot be provided unless there is direct knowledge of users needs and preferences. If the notion of customer satisfaction is to have meaning for users of mental health services then they must be involved in planning, running and monitoring services and represented on key decision making bodies. If consumers are to feed back in a meaningful way on their experiences of services they must be properly informed about the available treatment options. In reality, the information people need to make informed choices is often not available—there is, for example, a long-standing problem of lack of access to key information in acute units.

4. How can the cost effectiveness of user surveys and feedback mechanisms be assessed? What constitutes good practice in responding to complaints about public services? Is information about complaining easy to find and accessible?

4.1 In mental health services feedback and complaints processes should be seen as a matter of fundamental right, as well as an indispensible safeguard for service users. Cost effectiveness is not the primary consideration. However, we believe that feedback and complaints systems will be highly cost effective, providing that they are effective in engaging service users and that decision-makers are responsive to the feedback that they receive. Getting these processes right may require additional investment, but it will result in significant improvements to services. Being listened to and having one's concerns taken seriously also has a direct benefit for a group of users of public services who are often not treated with respect and dignity.

4.2 An important proviso is that user surveys and feed back mechanisms will only work effectively if they are based on best practice, and properly resourced. The NHS conducts some important surveys, but feedback mechanisms are poor—compared, for example, to the publicity given to the findings of surveys on user experience of the education or criminal justice systems. For example, much more use could be made of leaflets and posters in GPs surgeries, hospital and other relevant settings as a mechanism for feeding back key findings to service users.

4.3 We are concerned that the PASC does not wrongly give credence to an argument that says that user surveys and other involvement mechanisms are not cost-effective—as the response rate is often poor—where, in reality, this is because the approach taken to involvement is deficient. The "quality" of engagement is as important as the "quantity"—indeed, all else being equal, a better quality of engagement means a higher quantity of response.

4.4 The point is well made in a recent article in Mind's magazine "Open Mind" which looked "Beyond the Slogan" on user involvement: "Meetings, open days and questionnaires have their place when it comes to involving users of services. But I believe that they should be part of a much wider process than simply a quick-in and quick-out. The reality, more often than not, is that meetings are so under-attended that they never quite get off the ground, even in some cases after several attempts. And, of course, questionnaires can never properly ask the questions that people would really like to answer. It can become a costly and lethargic exercise with little return ... It is rarely the case that communities are given the scope, time, guidance and support necessary to begin the process of finding solutions and working towards change at the thinking stage".[14]

4.5 The Department of Health plans to set up local involvement networks (LINks) in England, replacing the patient forums that currently exist. LINks will look after patients in the NHS and users of social services- this is in line with the Government's vision of a joined up health and social care system as set out in the White Paper "Our health, Our care Our say". The Government wants local involvement networks to establish a specific relationship with overview and scrutiny committees (who scrutinise the activities of those that provide health and social care services). There will be a re-focussing on looking at commissioners of health and social care services and ensuring they involve local communities in decisions about which services to buy, depending on local need.

4.6 How LINks develop will be decided at a local level but it is hoped that there will be strengthened contacts with and involvement of voluntary and community groups through the new programme. Mind does have concerns, however. The LINks will not have the same powers of monitoring and inspection of services as the patient forums they replace. Primary Care Trusts will only be obliged to listen to—and not necessarily to act upon their—recommendations. This is of concern to Mind, given that service users often tell us that they feel disempowered when their involvement does not change outcomes. This does not bode well for a patient led NHS. In addition, while there was provision for mental health specific patient forums, there will be no mental health LINks as such.

4.7 Mental health service users often lack sufficient information about their rights and transparent and accessible complaints procedures are often not available to them.

4.8 This problem was revealed in a stark way in the National Patient Advisory Service (NPSA) report "With safety in mind: mental health services and patient safety" (2006). It revealed that 122 incidents of sexual abuse, including 19 rapes were reported to the NPSA—set up in 2001—in the period up to September 2005. It acknowledged that—across the whole range of safety incidents in mental health services—`it is likely that there is significant under-reporting of incidents" (p 6). Specifically, on sexual abuse incidents the NPSA report states that "it is not possible to make firm judgments on the veracity of the reported incidents from the data... full details of further investigation and action are often not included... while action taken by the service is described in some reports... the level of detail is variable" (p38).[15] This suggests that complaints procedures are not as clear or accessible or thorough as they should ideally be within NHS mental health services. (Incidentally, our understanding is that this NPSA report was not been widely distributed to Trusts and other key stakeholders.)

4.9 Witness, the organisation which campaigns against abuse by health and social care, reports that abuse by people working in mental health accounts for more calls to its helpline than any other sector.

4.10 We share Witness's concerns that the Government should respond fully to the findings of the Kerr/Haslam inquiry, published in 2005. William Kerr and Michael Haslam, both NHS consultant psychiatrists, were found to have sexually assaulted at least 77 of their patients over a 20-year period.[16] According to the inquiry, Kerr had raped or molested at least 67 women between 1965 and 1988. Thirty-eight of the women complained to nurses and 11 GPs but were dismissed as "fantasists". The inquiry found serious failings on the part of local health authorities and concluded "that substantial risks remain that patients and staff who raise concerns or complaints will not be heard, and we are not persuaded that their concerns will even now, in 2005, be speedily and appropriately addressed." A White Paper is expected in March to improve complaints processes for dealing with abuse by medical professionals in the light of a number of reports—including the Shipman Inquiry, the Ayling report and Kerr/Haslam. We are concerned, however, by suggestions that the Government may not respond directly and in full to the 74 recommendations of the Kerr/Haslam report.4.11 It is a common failing that public services fail to take complaints by mental health service users seriously. Over three quarters of respondents to a survey conducted for the Mind report Silenced Witnesses believed that denial of access to the criminal justice system for people with mental health problems was a widespread problem.[17] Seventy one% were concerned about failures of appropriate bodies to take complaints seriously, and over half (56%) were aware of cases where the Crown Prosecution Service had dropped cases because they alleged that the evidence was unreliable on mental health grounds.

Complaints procedures for mental health service users require cultural change in public services and the roll-out of training in mental health awareness. The introduction of the disability equality duty under the Disability Discrimination Act 2005 provides a perfect opportunity for public services to engage with this wider agenda.

4.12 For some of the most vulnerable users of public services, access to advocates and representatives is vital if they are to identify and negotiate complaints mechanisms. The Mental Capacity Act 2005 creates the first national statutory advocacy service. But access to the service is far too limited. Advocacy and representation via the service will only be available to people who lack mental capacity; for whom "serious medical treatment" or a change of long-term accommodation is proposed; and who do not have a representative (such as a carer or concerned relative) of any kind. Mind wants a right to advocacy to be much more widely available. It is also important that service users are aware of their rights and what they should expect from services and can make complaints to individuals or bodies other than those that are responsible for their care. Many service users will be unable to do this unless they have access to clear information in formats that they can understand, as well as accessible advocacy advise.

4.13 A key dimension of adequate systems for complaint and feedback is proper regulatory instruments and systems. This is why the We Need to Talk campaign that is being conducted by five national mental health charities, including Mind, stresses that regulation must be improved significantly if there is to be a major expansion in the availability of psychological therapies. The Our Health, Our Care, Our Say white paper commits the Department of Health to introduce statutory regulation for psychological therapies. Agreed training standards should link with an agreed code of practice and detailed guidance. Access to independent support and advocacy should be ensured and detailed information for service users should be developed.

4.14 The We Need to Talk campaign highlights another obvious point about complaint systems in public services. If—for example—patients are offered no alternative to a prescription for anti-depressants, and are not aware that psychological therapies are recommended by the National Institute of Clinical Excellence (NICE) for their conditions, then they will not complain about their lack of access to treatment. Informing patients of alternatives and giving people the opportunity to voice dissatisfaction with the service they are getting is often left to voluntary organisations such as Mind, as part of their lobbying and campaigning activities. This is a vital third sector role and needs to be supported by Government.

4.15 In general, there seems to be a lack of research evidence on awareness and use of the complaints procedures for mental health services that are overseen by the Healthcare Commission (HCC). Anecdotal evidence suggests that the HCC's role is not widely understood or recognised.

4.16 We understand that the HCC is currently conducting an audit of NHS complaint handling, with a report due to be published in June 2007.[18] The HCC recognises that complaints are often not being dealt with effectively at local level, and is auditing all NHS organisations in England against the Department of Health's core standards in this area. Mind expects this report to provide an important contribution to the evidence base on the handling of complaints about mental health services. The results should be widely disseminated and the lessons learnt. We note that this research will not cover situations where people have not made complaints due to lack of knowledge or support. We would like to see this issue also investigated by the HCC as part of its general responsibility for dealing with complaints about NHS Trusts.

5. Are there certain types of decision that are more suited to consultation than others? Do official consultations typically manage to capture the views of the right people? What kinds of consultation are most effective in engaging with the appropriate people?

5.1 Mind believes that service users should be involved in the whole range of decisions on service design and delivery. Real choice means having a voice in the design of services. However, it is difficult for service users to respond to highly detailed and technical documents on the "quick in and quick out" basis that currently seems to be widely favoured. The challenge is to develop alternative modes of engagement that enable service users to build the expertise and confidence to participate effectively in decision-making processes. Service users should be able to choose between different ways of getting involved and training and support should be available. This would have the additional benefit of broadening out the constituency of service users who would be able and willing to participate in policy consultations in a meaningful way.

5.2 As identified, for example, in the Joseph Rowntree Foundation (JRF) report, Evaluation on the National User Involvement Project (1999)—which included mental health—service users need a range of support and training in order to be fully involved in decision-making.[19] Specifically, the JRF identified the need for assertiveness and "speaking out" courses; disability equality training and other courses run by service user trainers to raise people's confidence; guidance on purchasers' and providers' decision-making structures; training in committee procedures and negotiating skills; information about what has and hasn't worked in other areas; equal opportunities training and training on legal issues and rights.

5.3 The JRF research also concluded that commiting dedicated resource to outreach work was an effective way of contacting service users from more marginalised groups and that employing experienced user consultants can be an effective method of assisting local groups to involve a range of service users.

5.4 In an article for Mind's magazine Open Mind, Kathleen Maguire comments that "the shortfall of user involvement in statutory agencies could be partly remedied by delivering educational seminars on large scale changes, where the pros and cons of potential solutions could be presented before the real involvement process begins. At least in this way people will have some knowledge of what it is they are being asked to become involved in".[20] Another approach is to involve service users in particular policy and delivery issues over a period of time—and with training and other support provided—so they build expertise and confidence. This is already done through steering groups, advisory committees and so on. There is scope for expanding this kind of approach and embedding it further in organisational cultures, processes and structures.

5.5 Effective engagement strategies of this kind will require further building of the capacity of the service user/survivor movement. The On Our Own Terms report published on behalf of a Service User Steering Group in 2002 by the Sainsbury Centre concluded that "the movement should be financially resourced and practically supported to build stronger local, regional and national networks. Specific issues identified included help with finding premises and employing workers; regional and national support for service user led research; and an IT strategy to help local groups to access and use internet communication, and to develop a national movement website and online journal.[21]

5.6 A basic requirement of an adequate service user strategy is clear and transparent processes on service user payments, reimbursement of expenses and so on.

5.7 A further issue is the challenge of involving the full range of people who experience mental distress. Currently, the service user movement predominantly represents people with experience of secondary mental health services, including many who have been subject to compulsory treatment. This group has been subject to a particularly invidious form of disempowerment, stigma and exclusion over many years. The strides taken by the service user movement over the past three decades are a huge political achievement. We welcome the Government's clear commitment to engaging with this group of service users (and that of other major political parties).

5.8 There has been a real and welcome change in approach. But this is a learning process for all of us, and we need to develop more effective practice if we are to avoid "tokenist" approaches. Where consultation processes are not thought through, and there is little impact on outcomes, it is not surprising if `consultation fatigue' sets in. A more co-ordinated approach across Government, with more advanced notification, would help to prevent overload, and to enable service users to respond in a more informed way, and organisations like Mind to consult more widely with their service user networks

5.9 The 1 in 4 people who experience mental distress in a given year—most of whom are dealt with in primary care services—are not well-represented within decision-making and policy processes. Better representation of this group will require creative thinking, political commitment and investment of resources.

5.10 We have a particular concern about diversity as an issue for service user involvement. The "On Our Own Terms" survey (see above) found that the service user movement was "predominantly white", and concluded that it needed to improve its ability to reflect the diversity of race, culture, gender and sexuality among service users". The Sainsbury Centre for Mental Health report "Breaking the Circles of Fear" (2002) concluded that development funding was needed `to enable leading Black service users/survivors to come together regularly and to start a process of outreach and discussion with black service users around the country". This is of particular importance given the over-representation of BME groups within mental health services.[22]

5.11 The Government has shown a clear commitment to involving service users. But genuine involvement requires a "cultural shift" so that service users have greater ownership of the methods of involvement and support is available to facilitate informed and effective participation.

5.12 Mind's policy on service user involvement identifies 11 principles for a full user involvement strategy. They are: equal citizenship; dignity and respect in mental health services; full information on treatment and rights; involvement in treatment and care; independent advocacy; broad participation of users through equal opportunities, employment and service delivery practices; involvement in planning, running and evaluation services; policies to ensure it is safe to get involved; training of workers by users; and practical commitment and resources for user involvement.

SUMMARY: TEN KEY POINTS

1. The involvement of mental health service users in decisions about treatment and the design and delivery of services is now recognised as an ethical and democratic requirement, and is increasingly supported by law—notably the Health and Social Care Act 2001 and the Disability Discrimination Act 2005.

2. There has been significant progress, but user involvement can still be ineffective, particularly where feedback mechanisms are poor, and there is a lack of discernible impact on the ground.

3. There would be merit in a review and rethink of service user involvement strategies. While there is a role for "quick in, quick out" consultation work, this is not sufficient for meaningful involvement. This requires the embedding of involvement mechanisms in organisational cultures, structures and processes; a more creative approach to public consultation; and support and training for service users—and the resources to do this.

4. The key question is "what do service users want from consultation". They want an opportunity to get across their personal experiences to policy makers and service providers, and they want to be listened to. Service users will disengage from processes if they do not enable them to contribute on their own terms or if they are not listened to.

5. Quantitative measures of user experience of services are important for policy making and accountability—for example, on waiting times or involvement with care plans or experience on in-patient environments.

6. Involvement in the wider design and delivery of services and in local and national policy making processes is a different—but equally valuable—exercise. Service users have a unique and indispensible contribution to make to such processes as "experts by experience".

7. Involvement needs to consider the views of all service users, including users of primary and secondary services, and "hard-to-reach" groups, such as BME communities, disabled people and gay and lesbian service users.

8. Meaningful participation requires support, training and information.

9. There is scope to extend "consumer choice" in mental health. The arguments for and against direct payments and individual budgets are not straightforward. There use by mental health service users should be determined by the evidence base and by a reasoned balancing of the claims of autonomy and risk-management, and not an excessively paternalistic approach that is rooted in outmoded attitudes to this group of service users.

10. Involvement of mental health service users will fail if it is experienced as tokenistic or patronising.

February 2007