Review of the arrangements for investigating the deaths of patients being treated for mental disorder

Findings - Involving families and carers, and making improvements across the system

68. Dealing sensitively, respectfully and compassionately with families and carers of people who have died is crucially important. The principles of openness, honesty, and transparency as set out in the organisational duty of candour should also be applied by providers in all their dealings with bereaved families and carers.

69. Understanding the experiences of families and carers has been a central part of this Review. They can offer a perspective that other people involved in the person's care cannot. Their involvement can help to provide an understanding of the full history of a person's care and they know the complex needs that person had thereby providing healthcare providers with additional crucial information to inform the investigations and any learning or improvement resulting from that.

70. The main messages from the Review's engagement with families and carers have been that they want investigations which tell them what happened, and which provide learning for the organisation and system to ensure that what happened to their relative does not happen to anyone else.

71. There appears to be a lack of a single source of information available that sets out the processes involved when someone dies while being cared for or treated for mental disorder. As a result of this it appears that families and carers have to spend to spend considerable time and effort in researching and understanding the current processes of review and investigation. It is clear that information which gives advice on the processes, along with descriptions of relevant terminology and rights would be very helpful to people who are trying to understand these in the midst of their grief.

72. Responses to the Review suggested that the initial discussions with the healthcare provider often characterised the rest of their experience of review and investigation in the following months. Survey responses indicated that most people felt their experience of the investigation they had been involved with was a negative one. Families and carers described how they felt there was a lack of respect for them resulting in what they perceived to be tokenistic investigations. Some described that the lack of openness in respect of information, particularly information on the care of their relative, was frustrating and led them to feel that healthcare providers were actively trying to withhold information.

They said an action plan was implemented to prevent it happening again but there are still very negative reports in the press about this hospital.
Family Member

73. In cases where families and carers are not satisfied with the healthcare provider's response there can be a protracted and uncoordinated process of trying to obtain further information either through complaints procedures, or taking a complaint to the Scottish Public Services Ombudsman (SPSO). In some instances people may seek legal assistance to obtain medical records or reports which healthcare providers have refused to provide. Meetings held with families and carers as part of the Review have often focussed on the work that they themselves have had to undertake to review medical records, correspondence, processes and other relevant pieces of information. This can add to the sense that the whole review process is unnecessarily drawn-out.

74. From survey results it appears that healthcare providers are willing to meet with families and carers but families and carers feel that they were not involved as much as they wanted to be and that their views were not taken into account. Furthermore it seems that in some instances, healthcare providers are not providing important information on how any changes had been implemented in response to the recommendations of any investigation. Many people who contributed to the review talked of the importance of there being some legacy to the sad death of their relative and that legacy being that lessons had been learned and acted upon.

It was a relief to know someone wanted to listen… It was stressful waiting for the report but ultimately worth the wait to get the results and was so good to know the team really wanted to make changes to the way people are treated.
Family Member

I feel that our current processes are operating reasonably well. We could do better to ensure that the report feedback to clinicians occurs, and we do not have any input into the system from service users. I am personally aware of a number of changes which have occurred as a direct result of incident investigations
Staff Member

75. One issue that was referred to in a number of responses was that of errors or inaccuracies in the investigation/review reports. There was a sense of frustration that there was no effective way to challenge information contained in reports that that the family or carer did not agree with.

76. The process of investigation can be confusing and traumatic for both services and families, as it can sometimes involve different organisations investigating in different ways without any overall co-ordination.

77. Language and terminology was another issue highlighted in responses to the survey for families and carers. Use of terms such 'adverse event' when speaking with families and carers was experienced by some as insensitive and this language can give the impression of a lack of compassion. Such terminology is widely used across healthcare and there is an opportunity in developing the new system of investigation and support for healthcare organisations to ensure that investigation processes of all types use language that is sensitive to those affected.

More involvement, explanation of the process. Written explanations of what is going on because people grieving cannot always take information in. Leaflets to explain how investigations can be launched by family members once they are in less pain.
Family Member

78. In order to comply with the organisational duty of candour the provider's representative is required to offer a face-to-face meeting with the relevant person as soon as possible. This will provide an opportunity for organisations to be open and honest with families and carers where someone has died in detention. However the duty will only apply to cases where there has been an unexpected or unavoidable incident that has, or appears to have, resulted in death or harm.

79. The organisational duty of candour recognises the power of apology and the legislation establishing the duty provides that: 'An apology or other step taken in accordance with the duty of candour procedure under section 22 does not of itself amount to an admission of negligence or a breach of a statutory duty'.^[17]

80. In respect of investigations which precede criminal prosecution there may be limited opportunities for sharing of information on the progress or results of these, and consequently any plans for enhancing the provision of information available to families and carers will need to take account of this.

Summary Of Findings

Carers and families find it difficult to navigate and understand the various processes involved in the review of a death. They have told the Review that they are not consistently treated in an honest and respectful way. There is variation in the level of involvement that families and carers have in investigations despite people being clear about how involved they want to be.

Actions

(6) The Scottish Government will work with partner organisations to produce resources for carers and families which provide information on how deaths are reviewed.

(7) The Scottish Government will work with partner organisations to improve the co-ordination of support available for families and carers. This will include the creation of a single point of contact for families and carers in relation to all investigations and reviews. It will also include investigation of any barriers that need to be addressed in order to ensure that co-ordination of support is able to operate effectively across the various organisations involved.

(8) The Scottish Government will establish an implementation group to oversee the implementation of actions arising from this report. This group will include equal representation from carers and families.

(9) The Scottish Government will work with partner organisations to consider what support and advice staff need to involve families and carers in a meaningful way.

81. Responses to the staff survey indicated that organisations have policies in place to support dissemination of learning, however there was also evidence that despite these policies this dissemination and sharing of learning does not happen reliably, consistently or routinely. Some staff felt that more needed to be done at a national level and referred to investigations making the same recommendations as previous investigations. Even where improvement plans had been implemented they are not always sustained.

82. HIS works to encourage and support continuous improvement in healthcare practice. The introduction of a new system of investigation will provide recommendations which can be analysed and shared at a national level. It is therefore important that appropriate support is available to healthcare organisations to learn from these investigations.

Summary of Findings

There is evidence that dissemination of learning and implementation of the required changes in relation to these deaths does not always happen at local and national levels. It is important that this does happen in order to deliver the changes and improvements that staff, carers and families want to see when improvement actions are identified.

Actions

(10) The Scottish Government will work with the Mental Welfare Commission for Scotland and Healthcare Improvement Scotland to improve the ways in which investigation findings and recommendations are disseminated, and explore options to support healthcare providers to use this information to commission improvement support. The new system of investigations referred to in action 1 should include a mechanism for transparent follow up and public assurance of changes.