Whose Safety is it Anyway? Service user and carer involvement in mental health care safety #MHNR2018

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This paper by Kathryn Berzins and colleagues examines an issue close to my heart and of critical importance to many service users and survivors: safety in mental health care (Faulkner, 2005; 2012). As a result of this, I have (unusually for a blog) done quite a bit of reading around this paper, because it sparked my interest to learn more and refresh my knowledge. I hope that readers will bear with me on this.

My own experience of inpatient care was far from safe. Admitted to a mixed ward in 1998/9, I often felt unsafe; partly from fellow male patients but more often from the authoritarian or inappropriate attitudes of staff. I have written elsewhere of observing patients being taunted and threatened by nursing staff and the effects this had on me and others (Faulkner, 2005). I did feel somewhat safe from myself with my madness contained in this way, but I was confused by the rules that seemed to emerge only when someone contravened them. Combined with the fear of approaching staff, I felt a pressure to behave and not appear ‘mad’ in a place where madness should have been accepted.

The concept of safety in mental health is highly complex. The role of services is as much one of control as it is of care, so there are competing priorities fighting over the space.

The concept of safety in mental health is highly complex. The role of services is as much one of control as it is of care, so there are competing priorities fighting over the space.

The concept of safety in mental health is highly complex. The role of services is as much one of control as it is of care, so there are competing priorities fighting over the space. Services and systems are charged with protecting themselves and others from people labelled mentally ill and perceived to be a risk to public safety, so it is not always clear whose safety is privileged (Slemon et al, 2017; Coffey et al, 2017). In the Government publication ‘Modernising Mental Health Services’ (DH 1998), which placed safety at the forefront of UK policy, it was clear that the safety of the public was the primary concern:

services should be safe, to protect the public and provide effective care for those with mental illness at the time they need it.
– (DH 1998, p.2)

The discourse of safety then is dominated by concerns about the potential risk to self and others presented by the individual. The consequent focus on risk and ‘risk management’ results in a relative absence of concern about the potential iatrogenic harms to the individual from care practices or the care environment and scant regard for the service user’s felt experience of safety (Slemon et al, 2017; Faulkner, 2005; Faulkner, 2012; CQC 2017). Equally, locating the risk within individuals leads to a greater tendency to stereotype those at risk on the basis of race, gender and diagnosis. Structural racism places black service users at greater risk of coercive practices, making services far from safe for them and resulting in service avoidance (Fernando, 2017). In addition, discussions about risk often takes place without involving individuals or their families, resulting in the perpetuation of inaccurate assessments and narratives about risk (Coffey et al, 2016).

In contradiction to the authors of this paper, I would say that little previous research has emphasised learning from the concerns raised by service users or carers (Dewa et al, 2018), although many service users have written about their experiences, particularly of inpatient care (Faulkner, 2005; Gilburt et al, 2008). Their fears tend to be quite different from those of the policy makers and professionals managing risk around them. Many service users fear aspects of services themselves: the imposition of power and control, the potential removal of independence through the enactment of mental health legislation, plus the fear of repercussions should they raise concerns or make complaints (Sweeney et al, 2015; Faulkner, 2012).

In this paper, Berzins and colleagues focussed on the ease of raising concerns about safety and the potential for service users and carers becoming involved in safety interventions.

This recent research focussed on the ease of raising concerns about safety and the potential for service users and carers becoming involved in safety interventions.

This recent research focussed on the ease of raising concerns about safety and the potential for service users and carers becoming involved in safety interventions.

Methods

The perspective taken by the authors was to explore the safety concerns raised by service users, carers and health professionals in relation to mental health care, and the feasibility of raising these concerns, using an online survey promoted via Twitter. The paper under consideration here focuses on the ease of raising concerns and the potential for involvement; more details about the identification of safety issues in mental health care are provided in a companion paper (Berzins et al, 2018b).

The authors used a cross-sectional structured survey, recruiting people with recent experience of using mental health services or of caring for someone (within the past two years) or experience of working in mental health services. The questions were developed with input from service users, carers and professionals as well as reference to the safety literature. Some questions used a Likert scale (5 choice points), some permitted multiple responses and others allowed free text responses. The focus of the questions was on:

  • the ease of raising concerns about safety, and reasons for any difficulty in doing so;
  • whether service user and carer involvement should be part of future safety interventions (reasons why and why not); and
  • individual willingness to participate in such developments.
The researchers shared their online survey via Twitter to recruit people (patients, carers and professionals) with recent experience of mental health services.

The researchers shared their online survey via Twitter to recruit people (patients, carers and professionals) with recent experience of mental health services.

Results

The data were collected between September and December 2016, with a total of 185 responses received: 77 (41%) service users, 18 (10%) carers, 90 (49%) health professionals. Around three-quarters of the respondents were female and three-quarters identified as White British. Thus only a quarter of the respondents identified as coming from minority ethnic communities, and very few men were involved. Forty participants had experienced detention under the Mental Health Act.

Ease of raising concerns

As many as 77% of service users and carers reported that it was ‘difficult’ or ‘very difficult’ to raise concerns about safety with mental health staff. The reasons they gave for this were that staff do not listen; they were afraid of repercussions if they raised concerns; and/or they found it difficult to raise issues whilst still feeling unwell; they feared having their concerns dismissed as lacking in credibility.

If you raise any concerns or issues or challenge any decision you are seen as a difficult patient. You are not expected to have a valid viewpoint. They know best. They can make life very difficult, refuse to help you, and most likely change your diagnosis to personality disorder so that no one will want to treat you.
[Service user, quoted in Berzins et al, p.3]

Involvement in interventions to address mental health care safety

There was more support for the involvement of service users and carers amongst the health professional respondents than among the service users and carers themselves: 81% compared to 63%. They were also less inclined to become involved personally. Whilst health professionals saw the potential for bringing expertise from experience to the discussion about safety interventions, service users and carers were more circumspect. Some saw safety as the responsibility of professionals. However, there were still many who believed that they had an important perspective to bring to the discussion.

Having felt unsafe so often I feel I have a lot to offer which staff could learn from..
[Service user quoted in Berzins et al, p.5]

As many as 77% of service users and carers reported that it was 'difficult' or 'very difficult' to raise concerns about safety with mental health staff.

As many as 77% of service users and carers reported that it was ‘difficult’ or ‘very difficult’ to raise concerns about safety with mental health staff.

Strengths and limitations

This is a small study, but it has implications of considerable significance both for the consideration of safety in mental health and for further research. Surveys have their drawbacks, in that they can only take a brief snapshot without context or depth to understand people’s views more fully or reflect differences in particular services or regions. Nevertheless, the authors clearly allowed for some free text responses which helped with this.

It is disappointing that the authors were unable to draw out any findings relating to race or gender, as this would have shed some light on particular concerns and difficulties experienced by these groups.

Recruiting research participants via social media inevitably has an impact on the nature of the people reached, although it is hard to find out exact figures on which to base this analysis. People using Twitter are likely to be on higher than average incomes and have higher than average educational backgrounds; they will also be a younger population than average. In the UK, there are somewhat more men than women on Twitter. It is hard to find figures on the level of engagement of different BME communities with Twitter. However, the nature of topics and interpersonal connections will have an influence on all of this. As reported by the authors, there is an active mental health community on Twitter. The authors suggest that the social media approach to recruitment has the potential to reach service users and carers wishing to participate anonymously, which may have encouraged people to come forward who would not have participated if it had taken place directly through health services.

Having said all of this, one of the strengths of this paper for me was that it prompted me to read more papers and think about the whole issue of safety in more depth. In some ways, I feel the authors have underplayed the significance of their findings, but perhaps this is understandable since a cross-sectional survey is limited in the depth of understanding it can offer.

It is disappointing that the authors were unable to draw out any findings relating to race or gender, as this would have shed some light on particular concerns and difficulties experienced by these groups.

It is disappointing that the authors were unable to draw out any findings relating to race or gender, as this would have shed some light on particular concerns and difficulties experienced by these groups.

Conclusions and discussion

For me the two key issues identified by this research are:

  • the centrality of staff relationships to service users’ experience of safety
  • the barriers service users experience in raising safety concerns.

The authors conclude that, by not listening to service users and carers, services are missing out on a valuable source of information that could inform interventions to improve safety in mental health care. They argue that this perspective is essential for improving safety in mental health care. Service users and carers were describing difficulties in raising concerns at all stages in the process, from raising an initial concern to being taken seriously. “Most striking was service users’ fears of repercussions” (p.6.), an issue that speaks directly to the power imbalance in mental health services, confirming some previous research in this area (Faulkner, 2012; Slemon, 2017).

Before discussing the implications of these findings further, it is worth looking at the safety issues identified in the authors’ companion paper. Here, the authors report that the most frequently identified safety issues were:

  • Individual characteristics (of staff), including competence and listening skills;
  • Service process, e.g. waiting times;
  • Management of staff and staffing levels;
  • External policy context, including overall resourcing of services.

These findings taken together tell an important story: safety in mental health care converges on the staff/patient relationship. Significantly more service users than professionals thought that staff not listening to them was a safety issue. Although some might see this as solely a quality issue, its role in maintaining safety is apparent. The significance of good or therapeutic relationships between service users and staff in mental health has been highlighted by many researchers, service users and staff (Simpson et al, Coffey et al, 2017; Gilburt, 2008). Equally, the imbalance of power in mental health care acts as a significant barrier to good relationships: power enacted in the service setting within the context of the power invested in the system to detain and treat people against their will (Slemon et al 2017; Berzins et al 2018b).

Safety in mental health care converges on the staff/patient relationship.

Safety in mental health care converges on the staff/patient relationship.

The implications of being unable to raise safety concerns are considerable. It is hard to complain as an inpatient because of the powerlessness inherent in the situation. As has been pointed out by other researchers and by service users, some of the defensive practices designed to promote risk management can cause fear and harm for patients; for example: close observations, seclusion, coercion, door locking and defensive nursing practices (Slemon et al 2017; Gilburt, 2008).

I am not entirely sure that the answer is to encourage more service user and carer involvement in addressing safety concerns, as suggested by Berzins and colleagues. Service user involvement is itself predicated on some degree of potential to influence (NSUN, 2015), which would be hard to achieve in a context where there is so much riding on safety failures for individual staff and services. Involvement initiatives also tend to exclude people most at risk of the issues under consideration (Kalathil, 2009). Slemon et al (2017) suggest “fundamentally re-evaluating the risk management culture that gives rise to and legitimizes harmful practices” (p.1) which could have more impact on the situation.

A different issue is whether service users (and their families) can be better involved in their own risk assessments. The term ‘accepted fictions’ was used by Coffey et al (2016) to describe the situation where workers fulfil risk management requirements as a function of the system “demonstrating that risk assessment has taken place to their colleagues, if not to the patient and their families” (Coffey et al, 2016, p.9). They found that few people were directly involved in conversations about their own risk and safety, resulting in a systematic creation of myths around risk and risk management (Coffey et al, 2016, p.10).

Personally, I believe that the best way to enable service users to raise concerns about safety is to build collective ways of doing so, ways that support people to raise issues together and remove the pressure from individuals to raise concerns in isolation (Faulkner, 2005). Group advocacy or peer support might offer the best ways forward. I suspect (and this is a possible area for research) that services with good group-based peer support in operation will also be or become more safe.

Unless the systems and the staff who support them can see safety from the other side and appreciate the aspects of mental health services that make service users feel sufficiently unsafe as to fear approaching them, I do not see much potential for change. Services need to seriously address the use of control and restraint, which is not impossible (Bowers et al, 2014), address racism, stigma and discrimination within services and work with patients and service users to talk about safety and risk. I endorse the recommendation from Slemon et al that the whole discourse needs to be re-evaluated; and the conversation needs to be based on consideration of people’s rights to dignity, privacy and respect. For all the discourse there is about safety and risk management, it is all too easy for people’s basic rights to be neglected behind locked doors, for their experience of safety to remain unexamined.

The best way to enable service users to raise concerns about safety is to build collective ways of doing so, ways that support people to raise issues together and remove the pressure from individuals to raise concerns in isolation.

The best way to enable service users to raise concerns about safety is to build collective ways of doing so, ways that support people to raise issues together and remove the pressure from individuals to raise concerns in isolation.

Links

Primary paper

Berzins KLouch G, Brown M, O’Hara JK, Baker J. (2018) Service user and carer involvement in mental health care safety: raising concerns and improving the safety of services. BMC Health Services Research 2018 18:644

Companion paper

Berzins K, Baker J, Brown M. Lawton R. (2018) A cross‐sectional survey of mental health service users’, carers’ and professionals’ priorities for patient safety in the United KingdomHealth Expect2018;00:1–10.

Other references

Bowers (2014) Safewards: a new model of conflict and containment on psychiatric wards. Journal of Psychiatric and Mental Health Nursing, 21, 499–508

Care Quality Commission (2017) The state of care in mental health services 2014 to 2017 Findings from CQC’s programme of comprehensive inspections of specialist mental health services. CQC.

Coffey, M., Cohen R., Faulkner A., Hannigan B., Simpson A. and Barlow S. (2016) Ordinary risks and accepted fictions: How contrasting and competing priorities work in risk assessment and mental health care planning. Health Expectations. DOI: 10.1111/hex.12474

Department of Health (1998) Modernising Mental Health Services: Safe Sound and Supportive: executive summary (PDF).

Dewa LH, Murray K, Thibaut B, et al. Identifying research priorities for patient safety in mental health: an international expert Delphi study. BMJ Open 2018;8:e021361. doi:10.1136/bmjopen-2017-021361

Faulkner, A. (2012) The Right to Take Risks: service users’ views of risk in adult social care. The Journal of Adult Protection Vol. 14 (6), pp.287 – 296.

Faulkner, A. (2005) Institutional conflict: the state of play in adult acute psychiatric wards. Journal of Adult Protection 7 (4), 6-12. Brighton: Pavilion Publishing.

Fernando, S. (2017) Institutional Racism in Psychiatry and Clinical Psychology. Palgrave Macmillan.

Gilburt, H., Rose, D. and Slade, M. (2008) The importance of relationships in mental health care: A qualitative study of service users’ experiences of psychiatric hospital admission in the UK. BMC Health Services Research 2008, 8:92 doi:10.1186/1472-6963-8-92

Kalathil, J. (2013) “Hard to Reach”? Racialised groups and mental health service user involvement. Chapter Nine in Staddon, P. (2013) Mental health service users in research. pp121-134.

NSUN (the National Service User Network) (2015) Involvement for Influence: the 4Pi National Involvement Standards. London: National Survivor User Network. www.nsun.org.uk

Slemon, A., Jenkins E. and Bungay V. (2017) Safety in psychiatric inpatient care: The impact of risk management culture on mental health nursing practice. Nursing Inquiry 24, e12199. doi: 10.1111/nin.12199.

Sweeney, A., Gillard, S., Wykes, T. and Rose, D. (2015) The role of fear in mental health service users’ experiences: a qualitative exploration. Social Psychiatry and Psychiatric Epidemiology, 50, 1079-1087.

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