Carers And Confidentiality

Care Appointments presents the Mental Welfare Commission for Scotland’s best practice guide to developing effective relationships between practitioners and carers…

Mrs Y phoned the Commission. She was very distressed about the care of her 22 year old son, who had been admitted to hospital for the second time with what was clearly a psychotic illness. The first admission was voluntary; this one was under a compulsory order.

She had a very difficult time trying to look after him after the first admission. He became very negative about her. He was using illicit drugs and alcohol, which she thought made him worse. She had been trying to get an appointment to speak to his consultant, to get information about his current illness and treatment. However, she had been told that this was impossible, for reasons of confidentiality, because her son was unwilling to consent to such discussion.

Everyone staffing the Mental Welfare Commission’s telephone advice line has received phone calls like this. They are often from parents who are distressed about the level of care their adult children are receiving. Sometimes they believe that the  treatment is inadequate, sometimes that it is inappropriate. Always they feel that their views have not been paid enough attention and that their children’s care is suffering as a result.

Not all calls are from parents: children, siblings, partners and friends also contact us with similar concerns. By the time they get in touch, relatives and carers may have become very frustrated in trying to get information and have their views heard. Sometimes the family and the mental health service have developed extremely polarised views, and sometimes their relationship has become bitterly adversarial.

The Millan Committee, set up in 1999 to review the current mental health legislation, recognised the need for informal carers to be consulted and informed (1). It made recommendations about this, which were translated into the provisions of the Mental Health (Care and Treatment) (Scotland) Act 2003. The principles in section 1 of the Act highlight the importance of carers in a person’s compulsory treatment. The principles recognise the importance of:

  • – Giving carers the information they need to help them care for the person
  • – Listening to carers’ views about how the Act is applied to the person’s care
  • – Taking the carers’ needs and circumstances into account

The new Act’s recognition of informal carers reflects what voluntary and statutory agencies have been trying to achieve for some years. The work of voluntary organisations, such as The National Schizophrenia Fellowship Scotland, demonstrates the crucial role of relatives and carers (2), not only in providing care for the individual, but also in helping to develop better mental health services. The central role of carers in the care of people with serious mental disorder is reflected in guidance given by statutory agencies, such as NHS Quality Assurance Scotland: one of the 11 standards in The Clinical Standards for schizophrenia is about the provision of support and information for carers (2).

The Practitioner’s Dilemma

While mental health practitioners might acknowledge the value of carer involvement, it may be difficult for them to reflect it in their day-to-day practice. One reason for this is that they may have a conflict between involving carers, on the one hand, and meeting their common law duty of confidentiality to the service user, on the other.

Though practitioners sometimes use the need for confidentiality as an excuse for not talking to carers, they can have real ethical and legal problems trying to balance confidentiality against the need to give information. These are problems that will be highlighted by the new Act, as staff struggle to observe the Act’s principles, whilst also trying to fulfil their duty of confidentiality.

What Is The Guidance On Confidentiality?

Of the professional regulatory bodies, the General Medical Council (GMC) gives the most detailed guidance on confidentiality and will be quoted in this paper. However, other regulatory and professional bodies, such as The Nursing and Midwifery Council (NMC) and the British Association of Social Workers, have similar general guidance on confidentiality (3 & 4).

The GMC guidance says: ‘Patients have a right to expect that information about them will be held in confidence by their doctors. Confidentiality is central to trust between doctors and patients’ (5). The guidance goes on to say that, if information is disclosed that could personally affect the patient, he or she must give express consent to the disclosure. The exception to this rule is where disclosure can be justified in the public interest: usually where it is essential to protect the patient or someone else from risk of death or serious harm.

There is also a statutory requirement for practitioners and service managers to keep personal information confidential. The Data Protection Act 1998 obliges them to follow certain principles in recording and disclosing the personal information they obtain. The provisions of the Act include not disclosing it without the consent of the person concerned, unless the disclosure is legally authorised under specified circumstances.

So, if a carer asks a person’s doctor, social worker or nurse, for information, what should they do? The first step is for the practitioner to assess the person’s capacity to give or withhold consent. Assessment of his or her capacity should focus on the particular decision about disclosure. A person may have capacity to make some types of welfare decisions, but not understand, or be able to weigh up, the implications of consenting to disclosure of personal information.

Simple agreement to disclosure should not be taken as informed consent. The assessment of the person’s capacity may be difficult and may require a second clinical opinion or consultation with the multidisciplinary care team.

What If The Service User Has The Capacity To Consent?

If the service user has the capacity to give informed consent to the disclosure of information, the practitioner should discuss the nature of the information to be disclosed with him or her, along with the benefits and possible drawbacks of its disclosure. The service user may benefit from the support of an advocacy worker in these discussions. It would be good practice for the practitioner to record the discussion with the service user and to get his or her written consent to disclosure, if possible.

The service user may be worried about the prospect of other people being given information and may refuse a general request to disclose information to his or her carers or family. However, it is rarely acceptable for practitioners to refuse to talk to carers simply because the service user has refused to give a blanket consent for them to do so. If the service user is not willing to give general permission for personal information to be disclosed to carers at that particular time, the practitioner should explore with the service user arrangements that could allow limited information to be shared with the carers.


Limited Information Sharing

If the practitioner says to the service user ‘your mother wants to see me to talk about your illness’, the service user may well reply ‘I don’t want you to talk to my mother’. This should not be the end of the story. The practitioner should explore with the service user his or her reasons for not wanting information to be disclosed and try to work with him or her to select and negotiate information that could be shared. The practitioner should also plan to come back to the issue in the future, so that obtaining consent becomes part of an ongoing discussion with the service user.

Selective Consent

A service user may refuse a general request to disclose information to his or her carers. However, he or she may see the benefit of disclosing some specific information and, indeed, may be able to identify such information. For example, the service user may find some of the carer’s behaviour or attitudes unhelpful and would want the carer to know about this, or might experience drug side effects that he or she would wish a carer to be aware of. The service user may be happy to consent to disclosure of such specific information.

Negotiated Areas Of Consent

The practitioner should discuss with the service user the sort of information that a carer may want, and then negotiate types of information that the service user is happy to be disclosed, and those that he or she wants to be kept confidential. For example, the service user may be happy for carers to be told factual details of his or her mental disorder and its effects, but not to be given information about his or her relationships, sexuality or substance misuse.

Consent As A Process

Practitioners may ask service users for consent on a single occasion, and then assume that their consent or refusal holds forever. This is rarely the case. As people who are ill recover, their views change. Practitioners should have ongoing discussions with service users about the value of involving their carers and should be regularly reviewing issues of consent with service users.

If the service user is willing to give limited consent to disclosure, it is essential that staff follow his or her wishes in this respect. It may reassure him or her to be offered the opportunity to take part in any meeting between staff and carers, to see that the limits on his or her consent are not being breached.

What If The Service User Will Not Or Cannot Consent?

If the service user lacks capacity or continues to refuse consent, it is still possible for practitioners to meet with carers and support them in their caring role.

Listening To Carers

Provided a carer already knows that a person is using mental health or learning disability services, there can be no breach of confidentiality in seeing the carers and listening to what they have to say. This need not involve any disclosure of confidential information.

It is rarely acceptable for practitioners to refuse to see carers, simply because the service user has not given consent. Indeed, getting information from, and about, family or carers is essential for a comprehensive assessment of a person’s mental health and social circumstances.

If a practitioner meets carers on a listening basis, everyone involved should be clear about the direction of the information sharing process, including the service user. Again, the service user may be reassured by being present at such a meeting. However, this has to be balanced against the possible risks to his or her relationship with the carers.

Giving General Information

even when a practitioner is unable to give personal information about the service user, he or she can support the carers by giving general information about mental illness or learning disability.

Practitioners and carers can also discuss the best way to respond to emotional distress, unusual behaviour or psychiatric symptoms and also the likely course and treatment of particular mental disorders. Carers may welcome information about local and national support groups.

Does the Adults with Incapacity (Scotland) Act 2000 have a role?

The Act may have a role where the service user lacks capacity to consent to the disclosure of information. A welfare attorney, appointed when the person had capacity, may have powers to obtain or disclose personal information. Service users who lose their capacity intermittently when they are ill may find it helpful to appoint a welfare attorney with this power. For service users whose capacity is permanently impaired, welfare guardianship may be helpful. Again, the power to consent to the disclosure of personal information should be included in the guardianship order.

However, a welfare guardianship application can be costly and time consuming. It is unlikely to be a solution to most of the confidentiality issues that arise in everyday practice.{mospagebreak}

Do advance statements have a role?

The service user could be encouraged, while well, to draw up an advance statement setting out how much information he or she wishes carers to be given when he or she is ill. It is important to note that such a statement cannot give the practitioner any legal authority to release information. However, it can provide some guidance in this very difficult area of clinical practice.

Can practitioners be justified in breaching confidentiality?

Occasionally, the practitioner may be justified in disclosing information to a carer, in the public interest. The guidance of both the GMC and the NMC indicate that disclosure of information may be in the public interest if it is to prevent serious harm to either the service user or others. The GMC’s guidance puts it as follows: ‘Disclosure of personal information without consent may be justified in the public interest, where failure to do so may expose the patient or others to death or serious harm.’

However, the GMC’s guidance also says: ‘You must weigh the possible harm (both to the patient and the overall trust between doctors and patients) against the benefits which are likely to arise from the release of information.’ The guidance goes on to indicate that, if the doctor thinks that disclosure in the public interest is necessary, he or she should seek the service user’s consent, if practicable. If the doctor does not get the service user’s consent, he or she may disclose relevant information, if the risks of not disclosing it are serious enough.

The guidance makes a distinction between consent not being sought, and consent being sought and refused: ‘If it is not possible to seek the service user’s consent, because he or she lacks capacity (or cannot be contacted), and there is a serious risk to either the service user or others, the practitioner should disclose the relevant information. In our view, disclosure would be justified in the interests of the service user, if it could prevent serious harm to his or her health, welfare and safety.’

If the service user’s consent is sought and he or she refuses, the practitioner should only breach confidentiality if there is a serious risk to another person. Circumstances in which the practitioner could breach confidentiality, in spite of the service user’s refusal, would include the prevention of a serious crime, especially a crime against the person.

In our view, the practitioner should warn carers if he or she believed that there was a serious risk that the service user might harm a carer or someone else in the family or neighbourhood. Depending on the seriousness of the risk, he or she should also consider informing the police. In considering whether to disclose information without the service user’s consent, it would be good practice for the practitioner to consult with the clinical team and record his or her reasons for deciding to go ahead with disclosure. If possible, it would also be desirable to inform the patient before disclosing the information.

What if the carer is also the named person?

The 2003 Act gives named persons extensive rights to be consulted and notified about patients’ compulsory care and treatment. They also have the right to approach the Mental Health Tribunal on the patient’s behalf.

If the patient has formally nominated the named person and understands the implications of this decision, then there should be little difficulty for practitioners or hospital managers in meeting their obligations to disclose the information required by the Act. However, a problem could arise if the patient has not nominated someone to act as his or her named person, and his or her primary carer or nearest relative becomes the named person by default, under section 251 of the Act.

The patient may object to the carer being given the information required by the Act. Under section 253, the patient can make a declaration removing the nearest person. However, many patients are too unwell to do this, or may be unwilling to do it. In this situation, practitioners and hospital managers have to balance their statutory obligations under the Act against their duty of confidentiality to the patient and also his or her right to privacy under Article 8 of the ECHR.

Sometimes the duty of confidentiality clearly outweighs the requirements of the Act, because giving the information to the carer could seriously harm the patient. For example, there may be evidence that the carer has abused the patient, and that giving him or her information about the patient’s compulsory care would exacerbate the abuse.

Unfortunately most cases are less clear-cut and decisions have to be made on a case-by-case basis. The decision whether to withhold statutory information from the named person should be made in consultation with the clinical team and involve the patient as much as possible. It may also be appropriate to seek legal advice. The reasons for withholding the information should always be recorded.

Do carers have a duty of confidentiality?

Unless a carer is providing care under a contract, or the service user has made his or her views on confidentiality of information known to the carer, there is no express requirement that a carer must respect the service user’s confidentiality. Nevertheless it may be implied from the circumstances that the person does not want information about him or her to be disclosed by the carer.

The carer would have a duty to respect confidentiality (express or implied) unless disclosure is in the public interest. If carers have obtained confidential information about a service user, we think that they should make every effort to respect the person’s right to privacy.

We have heard parents discussing sensitive personal information about their sons and daughters in a variety of situations, including public meetings. Cases have come to our attention in which parents have tried to publicise shortcomings in their child’s care, by taking his or her story to the newspapers.

It is understandable that carers become frustrated by the shortcomings in mental health or learning disability care, and want to improve things for the person concerned. However, Article 8 of the ECHR gives service users the same right to privacy, as it gives other people. Publicising personal details about a service user, without his or her consent, could be considered to show a lack of respect for the person and his or her rights. It could also deter practitioners from collaboration with carers.{mospagebreak}

What if the carer’s need for support conflicts with the service user’s right to privacy?

Carers supporting people with chronic mental illnesses or learning disability may need to get support from other carers. This usually involves talking over their situation with other carers, to get help and advice in what can be an extremely difficult and demanding job. Clearly a carer cannot get this support without sharing personal details about the service user and his or her condition.

Carers supporting people with chronic mental illnesses or learning disability may need to get support from other carers. This may cause carers a difficult dilemma, with a conflict between the needs of the carer and the rights of the service user. Some carers would argue that the needs of the carer and those of the service user are not clearly differentiated. They would say that the quality of the care that they can give the service user depends on the extent to which they are supported in their carer’s role: for example, someone giving 24 hour a day care to a person with dementia, can only do the job if he or she gets appropriate psychological and practical support.

We think that carers should try to get the service user’s consent to talk about his or her case, provided he or she has the capacity to give it. (They may need to seek advice about this from a mental health practitioner). However, many people with learning disability or dementia and other serious mental illnesses lack the capacity to make this kind of decision. In this situation we think that the principles of the Adults with Incapacity (Scotland) Act 2000 can provide some guidance to carers.

The principles would suggest that:

  • – ‘The service user’s past and present wishes and feelings about his or her privacy should be taken into account’
  • – ‘Other people who know him or her well should be consulted about whether to share information about him or her’
  • – ‘The information should only be shared if it will benefit the service user – ‘The carer should disclose only the minimum information that will achieve that benefit’ 


The principles of the Mental Health (Care and Treatment) (Scotland) Act 2003 challenge service providers and individual practitioners to involve carers more in the care and treatment of people with mental illness and learning disability. We hope that the provisions of the Act will stimulate both practitioners and carers to develop new ways of working together to help service users. Issues of confidentiality should not be a bar to the development of a fruitful partnership between practitioners and carers.

The Commission has a duty to both monitor the operation of the Act and promote the observance of its principles. We therefore also have a part to play in promoting practitioner-carer collaboration. As part of this work, we will be talking to service users, carers, practitioners and service managers across Scotland about how carer involvement is being developed and will be trying to help service providers and practitioners resolve the difficulties of doing it well.

Issues of confidentiality should not be a bar to the development of a fruitful partnership between practitioners and carers.

  • 1) New Directions: Report on the Review of the Mental Health (Scotland) Act 1984, January 2001
  • 2) Clinical Standards for Schizophrenia, Clinical Standards Board for Scotland, January 2001
  • 3) The NMC Code of Professional Conduct: standards for conduct, performance and ethics (2004), Nursing and Midwifery Council
  • 4) Code of Ethics for Social Work (2003), British Association of Social Workers
  • 5) Confidentiality: Protecting and Providing Information (2004), General Medical Council