Information sharing between mental health services and a patient’s family

This briefing deals with the importance of engaging appropriately with the family members of patients who are under the care of mental health services. This was highlighted by Part 2 of the Care Quality Commission’s (‘CQC’) Rapid Review (the ‘Review’) of services following the conviction of Valdo Calocane ('VC') as published in August 2024. We set out the key guidance and make recommendations to help inform service provider’s policy and practice in this sensitive area. 

Key Findings

The Review considered VC’s care alongside ten other patient cases for the purposes of benchmarking and establishing whether issues were widespread. The key findings of the Review regarding family involvement are as follows:

• VC’s family expressed that they did not feel engaged by VC’s care team.
• As part of the wider review, families reported feeling excluded, not listened to or that staff were not communicating effectively with them.
• The Review identified several occasions between July 2020 and August 2021 when VC’s family informed mental health services of their concerns that VC was deteriorating. Some evidence that services acted upon the information was identified. However, there were also times when this did not work as well.
• The Review highlighted an instance where healthcare professionals accepted VC’s assurances that he was taking his medicine and determined there was no further role for them in circumstances where family members had reported concerns that VC was becoming unwell had prompted the contact. This raised questions regarding the extent to which information was cross referenced with other available sources of information and or otherwise corroborated.
• In December 2021, VC contacted the Early Intervention in Psychosis Team and told them he no longer wanted them to contact his family or tell them about his care. Efforts to liaise with family reduced notably after this time. The Review does not comment upon the extent to which VC’s reasons were explored and or revisited by those involved in his care.

The Review concludes that professionals could have continued to engage with VC’s family whilst maintaining the duty of confidentiality owed to VC.

Commonly reported concerns

In our experience, the absence of timely updates, professionals not returning telephone calls and/or showing interest in the views of family members more generally are all often cited as key concerns for family members during investigations and inquests. Many family members report they felt they had valuable information regarding their loved one which was either not sought out or carefully considered by healthcare professionals and routinely, are of the view that the information could have influenced treatment decisions.

Many families struggle to understand why their loved one does not wish to share information with them regarding their illness and treatment and why they cannot receive this information in any event, particularly where they have been providing a close level of support. Lack of meaningful engagement and communication with family members are persistent themes identified by coroners in Prevention of Future Death Reports. See the thematic analysis of prevention of Future Death reports for suicide here.

The Review’s criticism certainly could have been more pronounced considering the scale of the concerns and the available guidance on the topic as we will discuss below.

Mental Health Act 1983 Code of Practice (the ‘Code’)

The Code advises as follows:

4.43 Unless there are good reasons to the contrary, patients should be encouraged to agree to their carers being involved in decisions under the Act and to them being kept informed. If patients lack capacity to consent to this, it may be appropriate to involve and inform carers if it is in the patient’s best interests – although that decision should always be made in the light of the specific circumstances of the case.

4.44 In order to ensure that carers can, where appropriate, participate fully in decision making, it is important that they have access to:

• Practical and emotional help and support to assist them in participating; and
• timely access to comprehensive, up to date and accurate information.

4.45 Even if carers cannot be given detailed information about a patient’s case, where appropriate they should be offered general information in an appropriate form, which may help them understand the nature of the mental disorder, the way it is treated, and the operation of the Act.

Service User Experience in Adult Mental Health (NICE Guideline CG136) (the ‘Guideline’)

The Guideline aims to ensure all adults have the best possible experience of NHS mental health services. In respect of involving family members, the Guideline directs:

1.1.14 Discuss with the person using mental health services if and how they want their family or carers to be involved in their care. Such discussions should take place at intervals to take account of any change in circumstances, and should not happen only once. As the involvement of families and carers can be quite complex, staff should receive training in the skills needed to negotiate and work with families and carers, and also in managing issues relating to information sharing and confidentiality. [Emphasis added]. 

Where people using mental health services do not wish for their family to be involved, professionals should provide family members with information regarding (para 1.1.17):

• statutory and third sector support groups and services for families and carers and how to access these; and
• their right to a formal carer’s assessment of their own needs and how to access this.

The Guideline is clear that there could be several reasons why there may be ambivalence towards family members not limited to the symptoms of mental illness or experience of violence or abuse.

Family members can also be provided with NICE ‘Information for the Public’ which deals with topics such as helping individuals to get the treatment they need and what should happen during an assessment undertaken by mental health services.

General Medical Council (‘GMC’) Guidance ‘Using and disclosing patient Information for direct care’

In addition, GMC Guidance makes clear that whilst respecting the duty of confidentiality ‘doctors must be considerate to those close to the patient and be sensitive and responsive in giving them information and support’ (para 34). [Emphasis added]. 

Further, it is acknowledged that ‘where an individual lacks capacity it is reasonable to assume the patient would want those closest to them to be kept informed of their general condition and prognosis, unless they indicate (or have previously indicated) otherwise’ (para 38). [Emphasis added].

Relevant questions

Whilst staff may well point to confidentiality and capacity considerations in general terms as reasons for (1) not sharing information or (2) not seeking out information from family members or (3) entertaining the unsolicited concerns or questions posed from family members, those scrutinising such decisions are likely to ask for the rationale to be explained in detail:

• when was the individual’s capacity to make such decisions last considered? and or assessed as needed?
• where is this documented?
• when was this reassessed or revisited?
• what efforts have been made to encourage the individual to reconsider their decision (if appropriate)
• when was this communicated to the family?
• What good reason is there for not listening to family concerns? Has this been discussed with the individual concerned?

Practical measures

Providers can empower their teams to navigate these sensitive issues concerning information sharing competently and with compassion by:

1. Developing clear policies and associated training in respect of how best to engage with family members.

• Staff should be equipped to confidently explain that the decision of the individual regarding the sharing of their information, assuming they are considered to have capacity to make such a decision, is to be respected.
• Staff should be prepared to clearly explain that this does not prevent family members or friends from sharing any information they consider important with professionals and confirm that the family may be asked for their views at relevant intervals even in circumstances where their loved one has decided they do not wish for information concerning their care to be shared.

2. Developing crib sheets for ease of reference and use in real time highlighting the key information to be given to family members when they call the service and how questions or concerns should be recorded in the electronic records and or escalated as appropriate.

3. Producing easy read leaflets for families summarising the process undertaken in respect of capacity assessment and managing their expectations regarding what they can expect in the way of contact from the service. This is likely to go a long way in fostering joint working, facilitating person-centred care and reducing the prosect of receiving any complaints.

4. Designating areas within patient records for noting the outcome of relevant capacity assessments, details of family members and friends and any decisions made by the individual in respect of information sharing including what should happen where the individual loses capacity and any other specific points in time at which the decision/s should be revisited.

5. Monitoring the effectiveness of any measures implemented, including by seeking feedback from individuals and their families directly regarding their experiences and refining processes accordingly.

6. Providers may also wish to consider membership of the ‘Triangle of Care Scheme’. 

We do hope that the above is a useful summary. Please do not hesitate to get in touch should you require any assistance or have any concerns in relation to this topic.

This insight was authored by Weightmans Associate, Holly Bridden.
Email - holly.bridden@weightmans.com