What does it cover?

  • Sharing information with families, guardians, spouses or relevant people in the lives of students
  • Sharing information with statutory services*

*Information sharing within the university is covered in Cohesiveness of Support Across the provider

Principles of good practice

1

University services work with students to mobilise all of their available resources to support their mental health– especially in instances of crisis.

2

The university acknowledges and demonstrates understanding that working with families, statutory services and others can provide effective support for students with poor mental health.

3

Student autonomy is central to decision making in relation to sharing information and is enabled as far as possible, unless the individual is appropriately assessed to lack mental capacity.

4

Universities ensure that any decision to override student wishes or to pass on information without consent is done as a result of an appropriate, well governed, clinical assessment, is consistent with relevant national guidance, is clearly justifiable and is in the best interests of the student.

5

Universities ensure that information is passed to the most appropriate people, who can reduce risk.

6

Confidentiality arrangements are clear, accessible and highly visible and relevant Data Sharing Agreements are in place.

Why is this theme important and what matters?

There has been significant debate within the sector and the media, as to whether universities should share information with families, or relevant people in the lives of students, when there are concerns about an individual student’s mental health (1). There have also been discussions as to when and how much information should be shared with statutory bodies (such as the NHS) when a university does not have the consent of the student to share (2).

A number of voices have raised concerns that universities should do more to alert families and/or relevant others, if a student becomes ill. These concerns suggest that if universities shared information more regularly, it would allow families or others to step in and prevent potential loss of life (1, 3).

Indeed, within healthcare, it is generally accepted that when an individual is seriously ill and/or presents a risk to themselves, then it is good practice to mobilise all of their available resources, to keep them safe and help them towards recovery (4, 5). These resources include their internal resources and external resources, such as family, friends, available organisations etc.

However, these discussions have raised concerns that automatic reporting to families could undermine student autonomy and rights to privacy and has the potential to increase risk to some students. Most students in Higher Education are adults and therefore have a legal right to decide whether or not information about their mental health is passed onto others (providing the student has mental capacity and they do not pose a risk to anyone but themselves) (6, 7). Research has shown that retaining autonomy, wherever possible, is important for those experiencing mental illness and that losing control over decisions can have negative effects on mental health and potentially increase risk now or in the future (8).

Decisions to share information without an individual’s consent are governed by a complex range of legislation, which varies across the four UK nations, including GDPR (2018), legislation related to mental capacity and the Human Rights Act (1998). This legislation protects an individual’s rights to control their own information and the circumstances under which it can be shared without their express consent.

Specific guidance for practitioners in negotiating this issue is provided in the “Information sharing and suicide prevention: Consensus statement” (7), issued by the Dept. of Health and supported by 9 professional bodies. Although this guidance has been issued for practitioners in England, it is supported by similar guidance in the other nations (9, 10) and UK wide guidelines issued by NICE (11).

Charter focus groups with staff revealed that this is a complicated and nuanced area, with multiple, complex issues that are considered by support services on a regular basis. In many cases, participants confirmed that their university does share information with families and does seek to work with families for the benefit of students. This happens in specific, well evaluated circumstances, on the basis of clear assessment. Primarily, much of this communication happens prior to the beginning of university, at the request and consent of the student, when families may act as advocates for students who are less able to communicate their needs, e.g. because of specific barriers caused by conditions such as autism. This communication allows for appropriate support to be put in place.

Staff explained that they often work with ill students to identify individuals in that student’s life, who could provide helpful support, such as family members, partners and/or friends. When necessary, staff support those students to make contact with families or others to explain the problem they are having. This may involve planning out conversations or, for example, a practitioner joining a student on a phone call or in a meeting with a family member to support disclosure. This leaves control of sharing with the student but also mobilises their external resources. This practise is consistent with national guidance, that encourages practitioners to work with families and the individual, when the individual wishes it and it is in their interests to do so (7).

However, there remain instances when the student does not wish to share their information and will not give consent to do so. It is clear that, at times, this is a perfectly legitimate decision on the part of the student. Participants in the consultation highlighted that cases of students estranged from their families and/or escaping relationships they perceive to be abusive are not unusual (9). It was also highlighted that families are not always able to respond helpfully to disclosures of mental illness or suicidal ideation.

In addition, there are concerns that if students believe that universities will automatically pass on concerns about their mental health or about suicidal thoughts, then they may be less willing to approach support services and disclose these experiences. Thus removing a source of qualified support and increasing risk. Given this balance of risk on both sides, it is clear that it is not helpful to have absolute rules around sharing information.

It is not useful to say that information should never be shared without consent or to say that it must always be shared in cases of risk. Rather, the decision to share or not must be made on a case by case basis, as a result of an appropriate clinical assessment.

“The Information Sharing and Suicide Prevention: Consensus Statement,” sets a clear basis on which this assessment should take place. The statement makes clear that the balance of factors to be considered requires a professional judgement, based on an understanding of the person, whether they currently have mental capacity, what would be in their best interest and whether there are any duties to the public interest, because of the far reaching impact that a suicide can have on others. This should take into account the person’s previously expressed wishes and views in relation to sharing information with families or others and, where practical, include consultation with colleagues (7).

Within a university setting, wherever possible assessment should be conducted by a qualified clinician in a designated mental health role, who has received updated training in risk assessment and assessing mental capacity. For smaller providers, this may be supported by partnerships or agreements with other organisations.

Whether or not to share information, therefore, should be based on an assessment of: the level of risk, what else can be done to reduce risk, whether the student has mental capacity and whether sharing information without consent will reduce or has the potential to increase risk. Where and to whom information is shared should be part of this risk assessment and should consider emergency services, statutory services, GPs, families and others.

If information is shared without consent, it is good practice for this decision to be made in conjunction with another qualified member of staff and agreed by an appropriate senior manager, who understands the issues (7). On these occasions, the student should be informed, unless to do so would increase risk.

Within this, universities should do what they can to maximise student autonomy– e.g. by giving them choice as to how that information is to be shared and offering them a role in doing so. The process of decision making and all of the options considered in reaching a decision on information sharing should be clearly documented.

These situations can be made easier and clearer to address if good arrangements are in place beforehand. If universities and support services publish highly visible, accessible and transparent confidentiality arrangements, that are clear to all, then students will be more able to make informed choices and will better understand the potential consequences of disclosing information.

Equally, if universities and other services create Data Sharing Agreements, then the process and basis of sharing information when an individual is at risk will be clearer and less subject to confusion, uncertainty and delay.

Up next in support

References

1
Weale, S. (2018). Let universities alert parents about students' struggles, says father. The Guardian. Friday, 15th July.. https://www.theguardian.com/education/2018/jun/15/let–universities–alert–parents–about–students–struggles–says–father
2
Leach, J. & Hall, J. (2011). A city–wide approach to cross–boundary working with students with mental health needs. Journal of Interprofessional Care. 25: pp. 138–144
3
BBC (2019). Student 'fell through cracks' before suicide. [online] BBC News.. https://www.bbc.co.uk/news/uk–england–merseyside–49773263. [Accessed: 2/10/19]
4
Dirik, A., Sandhu, S., Giacco, D., Barrett, K., Bennison, G., Collinson, S. & Priebe S. (2017). Why involve families in acute mental healthcare? A collaborative conceptual review. BMJ Open. 7.. DOI: 10.1136/bmjopen–2017–017680
5
Javed, A. & Herrman, H. (2017). Involving patients, carers and families: an international perspective on emerging priorities. BJPsych international, 14(1), pp. 1–4.
6
Hewson, B., (1999). The law on managing patients who deliberately harm themselves and refuse treatment. British Medical Journal, 319 (7214), 905–907.
7
Dept. of Health. (2014). Information sharing and suicide prevention: Consensus statement. Online: Gov.uk.. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/271792/Consensus_statement_on_information_sharing.pdf. [Accessed: 8/11/19]
8
Kelly, B.D. (2017) Confidentiality and privacy in the setting of involuntary mental health care: What standards should apply? Ethics, Medicine and Public Health. 3, pp. 90–97.. http://dx.doi.org/10.1016/j.jemep.2017.02.020
9
Dept. Of Health/An Roinn Slainte, (2019). Protect Life 2: A Strategy for Preventing Suicide and Self Harm in Northern Ireland 2019–2024. Online: NI.gov.uk. https://www.health–ni.gov.uk/sites/default/files/publications/health/pl–strategy.PDF
10
National Assembly for Wales, (2018). Everybody’s Business A report on suicide prevention in Wales. Online: National Assembly for Wales.. http://www.assembly.wales/laid%20documents/cr–ld11947/cr–ld11947–e.pdf. [Accessed: 9/11/19]
11
National Institute for Clinical Guidance, (2019). Suicide prevention: NICE quality standard. London: NICE.. https://www.nice.org.uk/guidance/qs189. [Accessed: 9/11/19]
12
Bland, B. (2016). The students with no support network. Times Higher Education. January 25.. https://www.timeshighereducation.com/blog/students–no–support–network. [Accessed: 2/10/19]