The findings of research to understand what challenges user-led mental health organisations face, and to explore what might help user-led organisations delivering mental health support to meet their aims and sustain and develop their activities. Read more
NSUN’s main campaign in 2019 is the value of user-led groups - that is demonstrating the huge value of user-led groups in our society and fighting the cause for their survival. Read more
Developed by people with lived experience as part of the National Involvement Partnership (NIP) project, the 4Pi National Standards ensure effective co-production, thus improving experiences of services and support. Read more
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If you have an issue that you need help with or want to share, this is your opportunity to find out if it is experienced by others. We can help you communicate with other members, understand the relevant policies and facilitate links with decision makers.
Member campaigns have been supported through a variety of approaches. We work to counter individual messages being dismissed or discredited as anecdotal or irrelevant. These Campaigns scale up issues from the individual and local experience to the collective and national.
We support a member to articulate their issue and experience of it and then assist them to ask questions of the wider membership through our communication mechanisms to establish if this is a wider and common experience.
Here are some examples:
Hannah, who had experienced abuse on a mixed sex psychiatric ward wanted to find out if others had similar experiences. NSUN supported Hannah to undertake a survey via the NSUN membership. She presented initial findings to her local Trust and they have committed to addressing the issues. We used the findings to support our contributions at the Mental Health Taskforce Group and confidently talked about not dismissing negative experiences just because they are in the minority. A summary of the findings was published and Hannah has since set up her own Facebook page ‘Thousands Over the Cuckoos Nest’ to develop collective creative action to raise awareness. We are currently exploring options for funding for full analysis and publication of the research.
Thousands over the cuckoo's nest
Hannah McDonald invites you to contribute to her anti stigma project 'Thousands over the cuckoo's nest'.
Hannah says: "For the past eight years I have suffered from a very severe and enduring Mental Illness. I have felt ashamed of it but not anymore and I would like to raise awareness of Mental Health. We all have Mental Health and it's something I feel needs to be talked about. My crazy idea is for people to make birds no bigger than 15cm/15cm and they can be any bird using any medium. For example, using paper by making origami birds, fabric, wool, wood, etc. I want people to have the freedom to make their birds how they want because we are all beautiful, unique individuals.Depending on whether his idea takes off I will try to get a gallery to display the birds in long lines to raise awareness and to try to remove stigma."
Please take a photo of your bird and post it on the Facebook page and send it to:
Hannah MacDonald, West London Collaborative, 2 Queen Caroline Street, Hammersmith, London W6 9DX
Akikur, who had experience of post-traumatic stress after being involved in traumatic street gang violence. He wanted to speak with other young people with experience of gang warfare, home abuse, street violence, racial / religious abuse or attacks or who had used substances to deal with emotions raised by a traumatic event. Akikur used responses to shape a number of films he has produced on the subject.
Suzi, who experienced being physically restrained several times during her admission to a psychiatric hospital wanted to find out from other NSUN members if they had experience similar distressing treatment and what they thought could be done to avoid using such ‘heavy handed’ treatment. Following a survey a report and an article was written and a joint project with Mind was undertaken to produce two guides on Reducing the use of physical restraint and other restrictive practices in mental health services.
Anand, who is looking to get a project off the ground based on his experience of support for health and social issues called ‘Holistic - Wellbeing What Works’ is a self-management programme that aims to address inequality in mental, emotional, physical and spiritual health. We are helping him to work his ideas in to a clear proposal with supporting evidence and connect him with potential supporters.
Nicola and Ivan, who are campaigning for community alternatives following the closure of 40 psychiatric beds in West London. They are helping to gather evidence to develop a financial case that is supported by existing models, current policy and NICE guidelines (CG136). The campaign is particularly focused on developing 24-hour peer respite support in the context of hospital diversion for people in crisis.
The London network coordinator is Raza Griffiths.
Click here for mental health news from London
service user led / user controlled
Definition of service user led or user-controlled
There is a range of meanings of ‘user controlled’. Here are some of the things Shaping Our Lives National User Network thinks ‘user controlled’ could include:
service user led group / service user run group
Definition of a service user group (based on Wallcraft 2003)
SERVICE USER RUN GROUP - user group as a group where service users make all the decisions.
SERVICE USER LED GROUP -a group where service users are on the majority on the management committee or other decision making body but are not the only decision-makers.
user involvement / service user involvement / survivor involvement / involvement / co-production
Definition of user involvement (based on Wallcraft 2003)
The term ‘user involvement’ is used in this report to mean the various ways in which mental health service users/survivors are helping to change mental health and social services.
This often works through service users/survivors becoming members of committees along with professionals and people from voluntary organisations, though it can include a number of other ways, such as conferences, discussion forums, open days, service users/survivors acting as paid consultants, or professionals visiting user/survivor groups.
mental health survivor
Definition of survivor (based on Wallcraft 2003)
The use of the term ‘survivor’ is seen as implying that the person has come through traumatic experiences (related to their mental health and/or mental health services) and is committed to campaigning for change. In some cases, it is used by people who no longer depend on services. Some respondents find this term more positive than ‘service user’, while a few think it is too dramatic and divisive.
Some people suggested alternative terms that could be used instead of ‘user’ or ‘survivor’. One group refers to people with ‘primary’ experience of mental health services (service users or survivors) and people with ‘secondary’ experience (family, friends and carers).
definition of service user
Definition of service user (based on Wallcraft 2003)
A service user is someone who is receiving or using (or has received or used) primary or secondary mental health care services.
The term ‘service user’ or ‘user’ is often seen as referring to those who use mental health services and are more concerned with service reform and improvement than with radical challenge.
However, some people strongly dislike being called ‘users’ as it sounds like ‘drug user’ or someone who uses other people. Others feel they did not choose to use services.
Definition of service user: Taken from Shaping Our Lives
Shaping Our Lives National User Network sees ‘service user’ as an active and positive term, which means more than one thing. It is important that ‘service user’ should always be based on self-identification. But here are some of the things we think it means.
This last point about recognising our shared experiences of using services, whoever we are, makes us powerful and gives us a strong voice to improve the services we are given and to give us more control and say over what kind of services we want.
What people sometimes mean by the term ‘service user’.
The term ‘service user’ can be used to restrict your identity as if all you are is a passive recipient of health and welfare services. That is to say that a service user can be seen to be someone who has things ‘done to them’ or who quietly accepts and receives a service. This makes it seem that the most important thing about you is that you use or have used services. It ignores all the other things you do and which make up who you are as a person. This is not what Shaping Our Lives National User Network means when we talk of ‘service users’.
service user / survivor movement
Definition of the movement (‘On Our Own Terms’ report 2003)
The ‘service user/survivor movement’ is a term used to describe the existence of numerous individuals who speak out for their own rights and those of others, and local groups and national organisations set up to provide mutual support or to promote the rights of current and former mental health service users to have a voice.
Group members and individuals may call themselves ‘survivors’, ‘service users’, ‘clients’, ‘ex-patients’ or other similar terms.
The term ‘movement’ implies that these individuals, groups and organisations share some common goals and are moving in a similar direction.
Chief Executive Officer
Akiko Hart (she/her) is the CEO of the National Survivor User Network. She has previously worked as the Hearing Voices Project Manager at Mind in Camden and the Director of Mental Health Europe. She is a Trustee of ISPS UK, the English Hearing Voices Network and National Voices.
A group of survivor historians who ensure our past is not lost
The group is led by Andrew Roberts.
The survivors history group meets in London once every two months. It curates an online timeline, a treasure trove of mental health history. You can visit it here
All NSUN financial documents and audited accounts - from 2007 to 2013
All NSUN financial documents and audited accounts - from 2007 to 2013
Summary of finances since 2007
NSUN audited accounts for 2015-2016
NSUN audited accounts for 2014-2015
NSUN audited accounts for 2013-2014
NSUN audited accounts for 2012-2013
NSUN audited accounts for 2011-2012
NSUN audited accounts for 2010-2011
Together's audited accounts for 2009-2010
Together's audited accounts for 2008-2009
Together's audited accounts for 2007-2008
Together's audited accounts for 2006-2007
Developed by people with lived experience as part of the National Involvement Partnership (NIP) project, the 4Pi National Standards ensure effective co-production, thus improving experiences of services and support.
Developed by people with lived experience as part of the National Involvement Partnership (NIP) project, the 4Pi National Standards ensure effective co-production, thus really improving experiences of services and support.
Visit our 4Pi hub to find out more about the history of 4Pi, view case studies & signatories, and sign up.
4Pi was the result of an NSUN hosted project, the National Involvement Partnership (NIP). The aim of the three year project was to strengthen and 'hard-wire' involvement in to the planning, delivery and evaluation of the services and support we use for our mental health and wellbeing needs.This framework established some basic principles to encourage people to think of involvement in terms of principles, purpose, presence, process and impact (4Pi).The Five Year Forward View for Mental Health describes 4Pi as a framework that ‘…will help ensure services and interventions are accessible and appropriate for people of all backgrounds, ages and experience’ and should support CQC inspection of ‘the quality of co-production in individual care planning, carer involvement and in partnership with communities to develop and improve mental health services.’
North East together (NEt) is the Regional Network for people with lived experience of mental health conditions living in the North East of England.
Since our launch at a conference in April 2009 attended by over 150 of the region’s service users, carers and workers in the mental health field, we have carried out a variety of initiatives usually led by our members letting us know what our priorities should be. For example, our Welfare Reform Action Group was set up in response to the 2010 Coalition Government’s changes to the benefits system, and campaigned to highlight the injustices of Welfare Reform and advocated for a fairer system for all.
In the last few years, we have developed some strong relationships with the statutory sector, and in particular with Public Health England and The Northern Clinical Network. We have worked closely with these and other partners in various pieces of work on a regional level including engaging with local service users and carers about plans for smoke free hospitals across the Region’s two NHS Mental Health Trusts. We followed this with more partnership in developing ‘A Weight off Your Mind’, a regional plan to support people with mental health conditions and/or a learning disability in secondary services to lose/manage their weight.
Our involvement in ‘A Weight off Your Mind’ included holding eleven Focus Groups across the region over the period of three years looking at how best to support people with mental health conditions to lose weight. We consulted on what service users and carers thought of the first draft of the regional plan, designed case studies of people who used services and wanted to lose weight, and then looked at what the barriers to this were. Finally our Secretary presented this work at three conferences to develop, launch and implement the plan - not to mention North East together coming up with the name A Weight off Your Mind.
NEt continue to be involved with A Weight off Your Mind and have also in the past year worked alongside The Northern Clinical Network to hold four focus groups across the region to ask people with lived experience of mental health conditions what good Crisis Care would look like. The original plan once the focus groups were completed was to present our findings at The Region’s Crisis Care Concordats to influence better ways of working. However that phase of the work is currently on hold as a result of the COVID 19 pandemic and lockdown.
We are currently taking some time to work out how best to engage with our membership and the wider service user and carer communities across the region whilst lockdown continues and are in the process of applying for grants to support this work.
To find out more about NEt, please contact the coordinator, Mish Loraine: [email protected] or 07902403630.
The network aims to provide mental health service users and survivors who are involved and interested in research a forum for networking, sharing information and supporting each other.
The Survivor Researcher Network (SRN) was originally formed after the ‘Strategies for Living’ Mental Health Foundation project (1997-2003) and was hosted by the Mental Health Foundation until 2011 when it moved to NSUN.
The network aims to provide mental health service users and survivors who are involved and interested in research with a forum for networking, sharing information and supporting each other.
The Survivor Researcher Network:
In 2013 a survey of SRN members helped to formulate draft aims and objectives and potential work of the new research network. The findings of the survey are available here:
In 2016, members of the SRN met for a seminar entitled ‘Reclaiming, Challenging and Reviving Survivor Research’. The event was funded by the Sociological Review Foundation and Middlesex University and created a space for researchers whose voices have not historically been included to consider issues around survivor research, whiteness and heteronormativity.
Following on from this event we recruited nine volunteers from across the country to join the SRN working group.
The current group members are:
Building on the previous work of the SRN, the working group looks specifically at developing a values-based framework for the network, identifying shared values, addressing issues of inclusivity and considering how we work with values in conflict. The group also considers next steps for the SRN, including options for practical research projects and funding opportunities.
In 2018, SRN published its manifesto, which sets out the background and context to survivor and service user research and our aims and values as a network
SRN produces a bulletin of research opportunities, events and articles every two months. Information is also now shared via the SRN Twitter account at @SurvivorResNet.
If you would like to join the SRN mailing list and receive the bulletin, please complete the NSUN membership form here. If you are already a member of NSUN, then just drop us an email at [email protected] and we will add you to the mailing list.
For all other SRN enquiries, please email [email protected].
Based in London, Roy leads on the welfare benefits campaign
To read about member campaigns please click here
Hannah MacDonald leads on one of our member campaigns
For member campaigns please click here
Suzi Billingham leads on one of the member campaigns
To read more about member campaigns please click here
The Independent Review of the Mental Health Act was really important to us and our members. As an independent, user led collective we lobbied to be a member of the Advisory Group and to make sure user led groups were recognised (as being distinct from other groups) and included in the consultation phases.
We've provided a charted breakdown of the recommendations to help make sense of what the recommendations will mean for you and your peers/someone you care for.
The Independent Review of the Mental Health Act was really important to us and our members. As an independent, user led collective we lobbied to be a member of the Advisory Group and to make sure user led groups were recognised (as being distinct from other groups) and included in the consultation phases.
We provided a charted breakdown of the recommendations to help make sense of what the recommendations will mean for you and your peers/someone you care for. Because the table is based on a report of over 300 pages, you might also want just to dip into the parts which are particularly important to you.
Over the last few months, NSUN has continued campaigning with other user-led groups for major changes in the Mental Health Act Review recommendations, to bring them in line with full human rights under the United Nations Convention on the Rights of Persons with Disabilities.
We now have a one-page campaign sheet which can be used to encourage still more individuals and organisations to sign up to our campaign. We have also produced a model letter to send to local MP candidates during the general election period. This is a crucial time, both because of the general electionand the current lack of support in political manifestos for our campaign and because we have confirmation that, despite everything which has been going on politically, a Green/White Paper based on the Review recommendations is still expected inDecember, or otherwise in the early New Year.
For more information, or if you have questions, please contact Dorothy Gould at [email protected]
Having rights based mental health legislation was unsurprisingly one of our central messages. Since 2015, the Members’ Manifesto has called for ‘…a reform of the Mental Health Act 2007 to make it fully compliant with human rights legislation and ensure that people are not harmed or abused’. Our work on this will continue to be informed by the Members’ Manifesto, which is being reviewed and updated via this survey.
For us, the publication of the Review is the beginning of a longer process. We’ve already published a number of items aimed at helping people make sense of the final report and the recommendations. Our initial response expressed some of the views and concerns about how the recommendations, if implemented, would actually help change the system, practice and treatment failings that are still reported on a regular basis.
Our latest articles explore the recommendations in more depth.
‘What does the Mental Health Act Review Actually Recommend?’, separates the recommendations into a set of sections that resemble the stages by which most people would experience the Mental Health Act, moving from seeking help, through sectioning or voluntary admission through to discharge and life afterwards.
Below we ask, What will the recommendations in the final Mental Health Act Review report mean for people with lived experience, and reflect on whether they address the human rights concerns raised by NSUN and co-signatories to NSUN’s two letters.
The government has already announced that two of the recommendations have been agreed: the replacement of the nearest relative system with a nominated person system and the use of advance choice documents to give increased choice to people. There will be further deliberation about the other recommendations and the interaction between them and the Mental Capacity Act.
We need to understand, and indeed hope, that the structural changes needed for any of these recommendations to be realised are possible and have the political will behind them.
NSUN will continue to find out what is most important to people and why. We’ll now be seeking the views of people who are able to provide an expert opinion on the different recommendations and their potential impact on the people who are and will be affected by the Act… and we will of course continue to call for a reform that is fully compliant with human rights.
The focus of this report, which came out on Thursday 6th December 2018, is making improvements to the Mental Health Act 1983 as it is. Whilst the Review Chair and Vice Chairs have put forward a large number of recommendations, they have ruled out more fundamental human rights changes. Because of that, the recommendations fail to meet the much more route and branch reform called for by NSUN, many other user-led organisations, individuals with lived experience and allies, in meetings and in letters to the Review Chair and Vice Chairs.
The Secretary of State has already said that the government will be accepting two of the Review recommendations: the replacement of the nearest relative system with a nominated person system and the use of advance decisions to give increased choice to people who are made subject to the Mental Health Act. It is not yet clear what other measures the government will adopt. The government plans to deliberate further about the other recommendations and to decide, too, on the right interaction between them and the Mental Capacity Act.
If you look at the material which follows below, you will see a breakdown of:
The material is divided into two parts for ease of reading.
You may want to use the breakdown to gain an overall sense of what the recommendations will mean for you and your peers/someone you care for. Because the breakdown is based on a report of over 300 pages, you might also want just to dip into the parts which are particularly important to you.
If you have further questions about any of this, please feel free to contact Dorothy Gould, lead at NSUN for issues related to the Mental Health Act, at [email protected]
(A) Choice, and autonomy (B) Least restriction (C) Therapeutic benefit (D) The person as an individual.
What this would mean:
The principles would have greater weight if they carry legal status.
Resolves concerns raised?
No. Whilst the principles would have a greater impact if they became part of legislation, it would still be legally permissible to section and treat people against their will and to put them on community treatment orders (CTOs). These compulsory powers would continue to be a breach of their human rights under the United Nations Convention for the Rights of Persons with Disabilities (UNCRPD). In addition, ‘autonomy’ for people with lived experience would not mean what it does for other people, would be a contradiction in terms.
Recommendation one: There should be more accessible and responsive mental health crisis services and community-based services. More research into these should also occur.
What this would mean: It should result in more help when crises arise and more community services, together with more evidence for these.
Resolves concerns raised? Partly. However, there is no recommendation as such for a significant increase in user-led services, nor for non-clinical, rights-based and culturally appropriate options. Throughout the report, a clinical model for mental distress is also employed and there is no emphasis on user-led research.
Recommendation two: If people have learning difficulties/ disabilities and/or a diagnosis of autism, health and social care commissioners should have a new statutory duty to ensure adequate community-based support and treatment, to pre-empt hospital admission and to enable quicker discharges. There have been some particular problems for the former related to inappropriate hospital admissions, conditions in hospital and delayed discharges.
What this would mean: The new duty would have the potential to address these particular issues for people with learning difficulties/disabilities and/or autism.
Resolves concerns raised? Partly, for similar reasons to those mentioned in recommendation one above. However, the recommendation does not eliminate the possibility of detention.
Recommendation three: It should become easier again for people to be admitted to hospital as voluntary patients.
What this would mean: At the moment, most available beds are for detained patients. An increase in beds for voluntary patients might help to decrease detentions.
Resolves concerns raised? Partly.
Recommendation four: Statutory Care Plans should be put in place for people in contact with CMHTs, inpatient care and/or social services together with better long term support for everyone.
What this would mean: Because these care plans would now be statutory, it is thought that they are more likely to occur. Voluntary patients and people discharged from hospital after a Section 2 would also have the right to a Statutory Care Plan.
Resolves concerns raised? Yes, in the sense that NSUN is campaigning for better support. However, NSUN wants to see an end to Sections 2 and 3.
Recommendation five: Section 117 aftercare should be available for everyone detained under a Section 3.
What this would mean: It should help to address inconsistencies and prevent repeated admissions.
Resolves concerns raised? As for recommendation four above.
Recommendation one: Someone should only be sectioned if there is a substantial risk to the person with lived experience, or the safety of others. In addition, treatment must be available which benefits the person and which cannot be given without detention.
What it would mean: If this recommendation is implemented, detentions might become less frequent.
Resolves concerns raised? No. Whilst this recommendation represents an improvement, detentions would still continue.
Recommendation two: For the time being, maintain CTOs because a few people have benefitted from them, but use the criteria set out above for putting someone on a CTO. Make it particularly difficult for CTOs to last for more than two years and consider abolishing them within five years.
What it would mean: These recommendations could reduce numbers of CTOs, or even lead to ending them after five years.
Resolves concerns raised? No, if CTOs continued, but yes if and when they were abolished.
Recommendation three: Have a concerted cross-organisational drive to tackle the current risk aversion culture.
What it would mean: If successful, this might again result in an important reduction of compulsory powers.
Resolves concerns raised? This would be a step forward, though it would not in itself bring the use of compulsory powers to an end.
Recommendation: Use the Mental Capacity Act for people assessed as lacking capacity who are not objecting to hospitalisation.
What this would mean: It would then be clearer who comes under which Act and for what reasons.
Resolves concerns raised? No. The Mental Capacity Act is itself not compliant with full human rights. In addition, if the Mental Capacity (Amendment) Bill is passed in its current form, people made subject to it will lose further rights.
Recommendation one: Statutory advance choice documents (such as advance directives) should be piloted as part of the statutory care planning process, for use when people are detained.
What this would mean: These documents would give people a considerable choice about treatment.
Resolves concerns raised? No in relation to detentions. People would not be allowed to refuse detention via the use of advance choice documents.
Recommendation two: If people are clinically assessed as having capacity they should be able to draw up an advance decision-making document - normally with their clinicians. Their choices should be respected unless a clinician has sound reasons for not doing so. Clinicians who overruled a choice would have to record their reasons in writing and be prepared for scrutiny by the Care Quality Commission, for instance.
What this would mean: People would have considerably more choice.
Resolves concerns raised? If people with lived experience gained some real decision-making powers over treatment, this would be an important step forward. However, the fact that a clinician could overrule an advance choice document is a limitation.
Recommendation three: If people are clinically assessed as not having capacity, they could still have an advance decision-making document. It would not be ‘authenticated’, though some use could still be made of it.
What this would mean: People’s choices would not have the same weight as those from people judged to have capacity.
Resolves concerns raised? No. Capacity tests are problematic in human rights terms. There is no recommendation for supported decision-making, as defined by the UNCRPD in the case of people judged to lack capacity. In addition decisions can be made for people ‘lacking capacity’ on the basis of their ‘best interests’. These three provisions run contrary to the UNCRPD.
Recommendation one: Improvements should be made to ward social environments and to the physical conditions of wards, with money released from the forthcoming Spending Review for the latter. Daily one-to one contact time with staff should be made available. Coercive and ‘blanket’ behavioural systems should be avoided.
What this would mean: The recommended measures would bring improvements to ward conditions if they prove more effective than a number of other measures have.
Resolves concerns raised? Vitally important though better hospital conditions are, these recommendations would not in themselves end detentions, nor the trauma that the sheer loss of liberty so often causes.
Recommendation two: There should be genuinely single sex accommodation, with separate access to any shared space.
What this would mean: This is a longstanding issue. If the recommendation became a consistent reality, it could make a positive difference to women especially.
Resolves concerns raised? Highly important though this would be, the recommendation would not end detentions as such.
Recommendation three: Within seven days of someone’s admission, have a comprehensive statutory Care and Treatment Plan in place, based so far as possible on shared decision-making. People admitted under Section 2 should receive a 2ndclinical opinion by the14th day of their admission.
What this would mean: The difference is that the Plan would now be statutory.
Resolves concerns raised? This process could be important in promoting earlier release, though it would not prevent detentions as such.
Recommendation four: Remove the power of associate hospital managers to authorise discharges after a hearing and consider introducing a new, independent hospital visitor’s role. An independent visitor would monitor life at a hospital and make sure that patients were treated with dignity and respect.
What this would mean: Hospital managers would still have a duty to examine detention and renewal applications and the power to discharge patients where fundamental errors had been made.
Resolves concerns raised? As for recommendation one above.
Recommendation one: Replace the nearest relative with a nominated person, chosen by the person who has lived experience, unless s/he does not have the capacity to do so. A nominated person should also have the right to be consulted about care plans, renewal of someone’s detention, CTO applications and extensions, transfers to another hospital and discharges.
What this would mean: People could then choose whoever they most wanted, rather than being limited to a hierarchical system, or to someone with whom relationships may or may not be positive.
Resolves concerns raised? The change would represent an important development and might have some impact on numbers of people who are detained, or on a CTO.
Recommendation two: Extend current advocacy roles.
What this would mean: Advocacy services would now cover care planning and advance choice documents. There would be automatic advocacy for people who are detained, unless the latter ‘opt out’. Providers should proactively approach people on CTOs to offer support. Culturally appropriate advocacy should be available for people of all ethnic backgrounds and communities
Resolves concerns raised? The extended role could have some important impacts, for instance on care and treatment choices, but it would not address the full range of human rights for which NSUN is campaigning.
Recommendation one: Improvements should be made to complaints systems. Hospital managers should be required to make these known to people with lived experience and nominated people. Staff should have an understanding of the Mental Health Act’s impact on people with lived experience. Board members should receive separate information about complaints from people who are detained.
What this would mean: It is hard to tell what impact these improvements would have, given longstanding problems for people with lived experience in raising complaints and getting them resolved satisfactorily.
Resolves concerns raised? NSUN and co-signatories did not directly raise complaints systems.
Recommendation two: There should be improvements to the lengths of detentions. People detained under Section 2 should also be able to appeal their Section after 14 days have passed. The initial maximum detention period for people detained under Section 3 should now be three, not six months.
What this would mean: The changes outlined here could make it easier for people to be discharged sooner.
Resolves concerns raised? Earlier discharges would represent a step in the right direction, but fall short of representing anything more fundamental.
Recommendation three: Nominated people should be able to make discharge applications on a person’s behalf. SOADs/ the Care Quality Commission should also be able to do so if the person’s circumstances have changed. There should be automatic referrals after set periods of time in relation both to sectioning and CTOs.
What this would mean: As for recommendation two.
Resolves concerns raised? As for recommendation two.
Recommendation four: Tribunals should have further powers: to grant leave from hospital, or transfers to another hospital. They should be given a small amount of power to stipulate what community services need to be in place for detained patients. If Tribunals refused discharge from a CTO, they should, nonetheless, be able to order changes to CTO conditions.
What this would mean: It could result in changes to detention or CTO conditions which feel a little better.
Resolves concerns raised? No, in the sense that it does not relate to an ending of detention, or CTOs.
Recommendation one: issues for Black, Asian and other minority ethnic (BAME) communities: In particular, implement an Organisational Competence Framework and Patient and Carer (Service User) Tool which builds on NHS England’s Patient and Carer Race Equality Framework. The Equality and Human Rights Commission should employ their legal powers to make sure that organisations are meeting their Public Sector Equality Duty. Regulatory bodies, such as the Care Quality Commission should also use their powers to ensure organisational improvements.
What this would mean: The impact that these recommendations would have is not yet very clear; further detail is needed.
Resolves concerns raised? NSUN has put forward strong concerns both about the particular over-representation of people from black African and Caribbean communities under the Mental Health Act and about other major disadvantages for many BAME people in the UK’s mental health system. In that sense, the recommendations would pick up concerns for NSUN. However, evidence has not yet been provided that the recommendations would do so effectively, for example address the sheer scale of institutional racism and the white western nature of the medical model.
Recommendation two: people with learning difficulties/disabilities and/or autism: In addition to the recommendation in section 2 above, the Code of Practice should be amended to clarify best Mental Health Act practice, Care and Treatment Plan Reviews should be given statutory force and the Mental Health Services Dataset should include specific detention data.
What this would mean: These recommendations contain some recognition that there are particular issues for people with learning difficulties/disabilities and/or autism under the Mental Health Act.
Resolves concerns raised? A continuing concern is that there is still some provision for them to be detained under the Mental Health Act.
Other people with lived experience who face more than one form of discrimination: No recommendations, or almost none relate to other people experiencing more than one type of discrimination, except in the case of children and young people. NSUN has asked for a clear focus on issues for other groups facing more than one form of discrimination, marginalisation and/or disadvantage. The absence of this is causing strongly felt disquiet.
Recommendation one: NHS Improvement and NHS England should fund a national Quality Improvement programme, related to the Mental Health Act specifically, which also involves people with lived experience and carers.
Recommendation two: Action should be taken to explore links between staff morale, experience and training and experiences of people made subject to the Act
Recommendation three: There should be a further strong focus on interdisciplinary working.
What these recommendations would mean: Information about them is limited, so it is unclear what impact they would have.
Resolve concerns raised? Issues behind these three recommendations are important. Whether they would lead to any fundamental human rights changes remains to be seen.
Recommendation one: By 2023/24, police cells should no longer be used as ‘a place of safety’ and most people who are detained under police powers should be moved to a place of safety by ambulance, not in police cars.
Recommendation two: Ambulance services should establish formal standards for responses to Section 136 of the Mental Health Act and similar call-outs and there should be improvements in ambulances themselves.
Recommendation three: Emergency beds should be more available for people made subject to Section 140 of the Act.
Recommendation four: NHS England should take over the commissioning of health services for people in police custody.
Recommendation five: Equality issues, particularly those related to police interactions with people belonging to black, Asian and other minority ethnic communities, should be addressed.
What these recommendations would mean: If effective, the recommendations set out in this section would lead to some important improvements under the Mental Health Act as it stands.
Resolve concerns raised? No. Whilst the recommendations address some key issues for people with lived experience under the current system, there is an underlying assumption that detention would continue. This runs contrary to the United Nations Convention on the Rights of Persons with Disabilities..
Recommendation one: A formal family liaison role should be provided to support families of people who die unexpectedly in detention.
What this would mean: The recommendation is intended to recognise the disproportionate numbers of African and Caribbean people who die in police custody and/or in mental health services. It is also an acknowledgement that, between 2006 and 2016, approximately 26 people have committed suicide each year, whilst detained as inpatients, and approximately 13 people on CTOs have done so.
Resolves concerns raised? A family liaison role should be of some support to families, but would not address the detention system itself.
Recommendation two: These families should also receive non-means-tested legal aid.
What this would mean: Families would then find it easier to obtain support and to know what action they could take.
Resolves concerns raised? This would be important, but would not deal with detention issues as such.
Recommendation three: Deaths that occur while someone is deprived of their liberty under the Mental Capacity Act should also trigger a coroner’s investigation and an inquest that involves a jury.
What this would mean: The Mental Capacity Act would then be parallel to the Mental Health Act in this respect.
Recommendation one: To make sure that mental distress issues are taken into account as early as possible, give magistrates’ courts similar powers to those held by Crown Courts.
What this would mean: Magistrates’ courts would also be able to remand someone for assessment or treatment, to commit a case to the Crown Court for consideration of a restriction order, or to hand down a supervision order under Section 1a of the Criminal Procedure (Insanity) Act.
Recommendation two: Avoid employing prisons as ‘a place of safety’.
What this would mean: Secure mental health provision would then always be used.
Recommendation three: Create a new, independent role, similar to that of an Approved Mental Health Professional, to assess prisoners in serious mental distress and recommend relevant transfers to secure hospitals. In addition, limit the period between referrals and transfers to 28 days.
What this would mean: If effective, these recommendations could reduce delays that exist at present.
Whether these three recommendations resolve issues raised? They could lead to avoidance of prison for people in serious mental distress, or quicker transfers from prison, but they fail to address more fundamental human rights issues.
Recommendation four: When patients are detained in hospital and subject to a restriction order, allow a responsible clinician to make decisions about leave and transfers, in place of the Ministry of Justice - for uncomplicated cases which involve little risk.
What this would mean: If the recommendation worked well, it could again lessen current delays.
Recommendation five: Allow Tribunals to authorise leave, or transfers to another hospital when they decide against releasing a ‘restricted patient’.
What this would mean: Currently, Tribunals can authorise discharges, but not leave, nor transfers. Allowing Tribunals to do the latter would increase their powers.
Recommendation six: Give Tribunals the power to discharge people under conditions that restrict their freedom in the community.
What this would mean: A recent ruling by the Supreme Court is that people cannot be discharged if such conditions apply. The recommendation set out here would enable discharges of this sort.
Recommendation seven: People on conditional discharges should be referred automatically to a Tribunal after 12 months and then at regular intervals, if they have not made an application.
What this would mean: People would not be kept under unnecessary restrictions when factors such as complex needs are an obstacle to their applying to Tribunals themselves.
Recommendation eight: The government should consider giving Tribunal status to Parole Boards and combining Tribunals and Parole Boards where this is appropriate.
What this would mean: The recommendation could reduce delays for patients in secure hospitals who have the types of criminal records which mean that their release has to be authorised by a Parole Board, as well as a Tribunal.
Recommendation nine: Make sure that criminal courts, clinicians and the Justice Secretary all use the same risk assessment framework, that risk assessments are written into Care and Treatment Plans and that they are reviewed at least annually, as well as before every Tribunal hearing.
What this would mean: There should then be an end to confusion caused by the use of different risk assessment measures and more informed decision-making.
Whether recommendations four to nine resolve issues raised? These recommendations should result in greater flexibility within existing systems, but would again fail to do more than that.
Recommendation one: The same, independent role recommended to speed up prison transfers should also be in place for immigration detainees. (See section 3 above.)
What this would mean: There should then be quicker moves from immigration centres for people experiencing serious mental distress.
Resolves concerns raised? This recommendation represents a step forward. Whether it met our campaign points would depend on whether the transfers resulted in detention under the Mental Health Act, or not. (See recommendation two below.)
Recommendation two: Instead of being transferred to secure hospitals and held under Section 48/49 of the Mental Health Act, the least restrictive option should be used, including treatment in the community, informal admission and civil sections of the Act.
What this would mean: The result should be a decreased use of restriction, though the latter would not be ended.
Resolves concerns raised? Yes, where detention under the Mental Health Act was not employed, but no where such detention continued to be used. How valuable the recommendation proved to be would also depend on the extent to which institutional racism is recognised and addressed effectively.
No recommendation has been made. There is recognition in the Review report that people with lived experience are victims of crime more often than people in general. However, the focus is then put on crimes which they may commit as a result of deprivation, exclusion, poverty and neglect.
What this would mean: Under the Review’s recommendations, there would be no more protection than currently exists for people with lived experience who become victims of crime.
Resolves concerns raised? No. The lack of any recommendation is very concerning, given the major flaws in existing systems, and falls well short of the equality for people with lived experience for which NSUN and co-signatories have been campaigning.
Recommendation: The Department of Health and Social Care and the Ministry of Justice should work in partnership to ensure that victims receive adequate information and know that they can make impact statements to Tribunals, where this is appropriate.
What this would mean: Victims of crimes committed by people with lived experience would have more rights.
Resolves concerns raised? No. Whilst this is an important recommendation, the lack of any parallel recommendation for people with lived experience who are victims of crime is of major concern. (See section 5 above.)
Recommendation one: In view of continuing flaws in the collection of Mental Health Act statistics, establish a new national baseline about use of the Act.
Recommendation two: Because there is no national data set for recording the work of Approved Mental Health Professionals, create one and integrate it into the NHS Digital Mental Health Services Data Set.
Recommendation three: Publish data as soon as possible after the time when it is collected.
Recommendation four: Set up a new national Hub to pull together and analyse Mental Health Act data available within the NHS and to explore ways of linking this data with data from other sources.
What these four recommendations mean: They should make statistics about detentions better, more integrated and easier to analyse.
Whether they resolve concerns raised? No. Whilst these improvements could highlight a need for further reductions in detention, they would not change compulsory powers as such.
Recommendation five: Make sure that the same ethnicity categories are used in all data sets.
What this would mean: This change should make it easier to understand why people from black, Asian and other minority ethnic communities are over-represented under the Mental Health Act.
Resolves concerns raised? Not as such. In addition, whilst the text of the report mentions collecting similar data about other people who face more than one form of discrimination, this does not form a clear part of the recommendations.
Recommendation six: NHS England should make sure that there are digital records of actions related to the Mental Health Act, including information given to people about the Act, people’s advance choice documents, their nominated person, assessments, care plans, medication and leave forms. Digital records should replace the paper-based systems often used at the moment. There should also be streamlining between NHS England, NHS Digital, the Care Quality Commission, Tribunals and service providers.
What these recommendations mean: It is thought that the use of digital records would enable both people with lived experience and professionals to gain easy access to all relevant information, still more so if there were streamlining between relevant professional bodies.
Whether they resolve concerns raised? No, in the sense that the proposed improvements relate to a continued use of detention. In addition, the recommendations do not allow for the difficult access/lack of access to the internet faced by a number of people with lived experience.
NSUN and co-signatories to NSUN’s letters will continue to campaign for:
 The United Nations Convention on the Rights of Persons with Disabilities is a ground-breaking expression of human rights.
Documents by the Making A Real Difference (MARD) project.
Valuing involvementInvolvement policyGood practiceWorking with diverse groupsCommunicating with diverse groupsMaking events more inclusiveMinimum standards for working with diverse groupsCommissioning guidelinesLeadership trainingPayment and reimbursement guidanceBenefit conditionsCommunication strategyStaff induction packTraining resourcePayment and reimbursement templateMonitoring and evaluation toolsInvolvement passportFinal project reportHASCAS report on the MARD project
Publications by the members of the national survivor user network (NSUN), network for mental health, on user involvement and co-production
The case for co-production Charter and Guidelines for Partnership Working between Generic and Black and Minority Ethnic User/Survivor-led Organisations (TOOTS)Dancing to our own tunes by Jayasree KalathilMaking user involvement work by Peter BeresfordOn our own terms by Jan WallcraftStrategies for living: user led research into strategies for living with mental distressUser involvement - a brief literature review by Alison Faulkner Ethnic Inequalities in Mental Health: Promoting Lasting Positive Change - A Consultation with Black and Minority Ethnic Mental Health Service Users