Queen Elizabeth University Hospital/NHS Greater Glasgow and Clyde Oversight Board: interim report

Communication and Engagement

96. The Oversight Board was established against a background of increasing dissatisfaction and distress among families of the children and young people in the paediatric haemato-oncology service, reacting to how NHS GGC had been communicating the continuing issues around infection in the hospital. In November 2019, the Cabinet Secretary for Health and Sport met with several families, which led to a set of 71 issues and questions about the hospital and the infections being posed to NHS GGC. The issues on which families felt frustrated in getting information from the Health Board included (but were not limited to):

• assurances on the current safety of the water system and the wider clinical environment for the children and young people;
• progress with key remedial work on different wards, including 2A and 2B in the RHC from which the Schiehallion Unit had been de-canted in 2018;
• issues relating to the current location of the children and young people in the haemato-oncology services in Ward 6A in the QEUH;
• the adequacy of IPC measures in place;
• conflicting messages in the communications given to patients and families as the infection incidents had progressed; and
• a perceived lack of compliance with the organisational duty of candour.

Responses to those questions were provided to families and subsequently posted by NHS GGC on its website, and the issues raised helped to set the remit of this Oversight Board.

97. Discontent with NHS GGC's communication was also evident in the survey conducted by Professor Craig White of this group of families in December 2019. Twenty responses were received, with the majority of respondents saying they were not satisfied with the level of communication about the ongoing issues by the Health Board, with clear dissatisfaction expressed about NHS GGC's performance in this regard. The issues experienced by families were many and varied: some were individual and personal matters relating to their own children, while others reflected a more common set of concerns about how the Health Board was engaging with them.

98. Supporting patients and families in the midst of a prolonged crisis would have been challenging to any Health Board. It was made particularly complex for NHS GGC by the difficulties in providing the children, young people and families with certainty and clarity about what has happening, as will be seen below. Nevertheless, the experience of some patients and families pointed to problems of the Health Board in its approach to communication, and the view by some that the Health Board was failing to exhibit the essential person-centred principles to communication that are the cornerstone of NHS Scotland.

99. The strength of feeling among several families highlighted the importance of engaging with families throughout the Oversight Board's work. A dedicated Communication and Engagement Subgroup was established, chaired by Professor White and with membership including communication experts from other Health Boards as well as representatives of the families themselves. It provided a forum for direct exchange of views and discussions between the Health Board and family representatives.

100. The Oversight Board set two key success indicators for NHS GGC in its approach to reviewing communication and engagement. Patients and families within the paediatric haemato-oncology service should receive relevant information and are engaged with – and are treated with respect to their rights to information and participation – in a culture that reflects the values of NHS Scotland in full. That should be seen in the following.

• Families and children and young people within the haemato-oncology service receive relevant information and are engaged with in a manner that reflects the values of the NHS Scotland in full.
• Families and children and young people within the haemato-oncology service are treated with respect to their rights to information and participation in a culture reflecting the values of the NHS Scotland in full.

101. In its work, the Subgroup concluded that evidence of this kind of success should be seen through the following:

• priority is placed on communication and information provided to patients and families with a focus on respect and transparency (with an initial focus on ensuring that all outstanding patient and family questions raised are answered);
• the Health Board ensures there is an appropriate Communication and Engagement Plan with a person-centred approach, including a clear Executive Lead for implementing and monitoring; and
• a review is conducted of key materials, policies and procedures in NHS GGC with respect to the organisational duty of candour and Significant Adverse Event Reviews, and identification of any national learning/lessons learnt.

102. Not all of the work carried out for the Oversight Board through the Subgroup is set out in the Interim Report. NHS GGC's approach to its organisational duty of candour and how it addressed Significant Adverse Event Reviews are key elements of how a Health Board should engage with patients and families when death or harm occurs within a hospital setting. They are processes that are governed by legal, regulatory and guidance frameworks, and the Oversight Board's findings here will be set out in the Final Report.

103. The Interim Report focuses on the extent to which communication and engagement by NHS GGC has reflected consistent delivery of the overarching principles outlined above, rooted in the NHS Scotland approach to person-centred care. These issues are considered under the following headings:

• the strategic approach to communication in NHS GGC;
• application of this approach in IPC, and the issues experienced by patients and families through this period; and
• scope for improvement.

Strategic Approach to Communication

104. The principles of good communication in healthcare settings have been clearly expressed nationally. The Director-General of Health and Social Care in the Scottish Government's and Chief Executive of NHS Scotland's letter of 22 February 2019^[14] stressed the importance of appropriate communication:

"Our learning so far from the degree of public interest in these issues makes very clear that communication is always better done directly with those most closely affected first. We should, as far as possible, be alerting staff, patients and families before making any public statements and the service and Scottish Government should work closely together in our communications with the public."

105. NHS GGC's own stated objectives for person-centred care are set out in it 2019-23 Healthcare Quality Strategy^[15]. This represents a level of aspiration – and a means of measuring how well NHS GGC currently operates – that the Oversight Board endorses. Responding to what patients and families wanted, the Strategy aims for a high-quality service that:

• takes time with patients and listens to them;
• takes care of people, looks after them and makes sure they get the right treatment;
• communicates well with patients by explaining all they need to know and involving them in decision making;
• is knowledgeable, safe and trustworthy;
• is efficient;
• is caring, compassionate and shows empathy;
• has friendly, kind, competent and professional staff; and
• communicates with the people who matter to them regarding their progress and condition.

106. The Health Board has recognised the kind of communication and engagement that should be expected for these patients and families in its description of 'Person-Centred Care' with the following series of commitments in that document.

• We will enable people to share their personal preferences, needs and wishes about their care and treatment and include these in their care plan, care delivery and in our interactions with them.
• We will involve the people who matter to them in their care in a way that they wish and that meets the requirements of the Carer's Act (2018).
• We will develop further the person centred approaches to visiting throughout NHS GGC.
• We will make sure people experience care, which is coordinated and that they receive information in a clear, accurate and understandable format, which helps support them to make informed decisions about their care and treatment.
• We will give people the opportunity to be involved and/or be present in decisions about their care and treatment and include the people who they want to be involved in accordance with their expressed wishes and preferences.
• We will provide training and education, to enable staff to treat people with kindness and compassion, whilst respecting their individuality, dignity and privacy.
• We will inform people about how to provide their feedback, comments and concerns about their care and treatment. We will review our approach to collecting and managing feedback to make sure it is fit for purpose.
• We will make sure there is a collaborative and consultative approach in place to enable staff to actively listen, learn, reflect and act on all care experience feedback received and to ensure continual improvement in the quality of care delivered and the professional development of all staff.
• We will continue to identify and build opportunities for volunteers to help improve the health and wellbeing of patients, families and carers.
• We will engage with people, communities and the population we serve to deliver high quality services to meet their needs.

107. The centrality of these communication principles is reflected in other NHS GGC strategies. In particular, the Health Board developed a dedicated communication strategy for infection issues: Healthcare Associated Infection Communications Strategy^[16], published in 2015 (and due for review in 2019). The Strategy stressed "the importance of a culture of openness, transparency and candour". It acknowledged the need to learn from incidents such as the Mid Staffordshire NHS Foundation Trust Public Inquiry as well as the impact of the Vale of Leven Hospital outbreak of C. difficile and the recommendations from Lord Maclean's Inquiry.

108. The Strategy set out the principles of communicating infection diagnosis and risks, and included key actions to be taken forward in individual cases such as (but not limited to) the following:

• every patient should be informed of the risk of infection and the actions being taken to prevent healthcare associated infection;
• if a patient is diagnosed with an infection, the diagnosis should be discussed with the patient by one of the members of the clinical team if possible; and
• the Health Board should ensure that if a patient dies with an infection which is either the primary cause of death or a contributing factor, families are provided with a clear explanation of the role played by the infection.

109. The Strategy presented a clear baseline of principles against which the actions with respect to the QEUH infection incidents can be considered. As noted, the Strategy is several years old and is due to be updated; in light of recent experiences with the QEUH, and the recommendations set out here (and in the Independent Review), there is a strong impetus for a new, revised version of the Strategy to be produced and issued.

Communication in the Context of Infection Prevention and Control

110. While a statement of principles and standards is vital, what matters most is how strategic aspiration is translated into action. Good practice was clearly evident. When reviewing how the Health Board responded to the unfolding circumstances of infections, the Oversight Board noted evidence of improvement already at work within the Health Board. It is important to highlight this, not least as practice that could support national learning.

111. Throughout the incidents, there was generally a recognition (not least by the children, young people and families themselves) of good communication at the point of care. At ward level, communication was often effective and sensitive, displaying the Health Board's person-centred values in how it responded to individual patients' and families' circumstances. Direct communication by the clinical and medical staff have been highly regarded by the children, young people and families throughout, not least when it related to the individual care of patients.

112. Communication to patients and families individually at the point of care was undertaken with compassion, care and support by the relevant staff, especially in the Schiehallion Unit. Ward staff were often the key means by which major, and often unsettling news was conveyed, such as the decision to de-cant Wards 2A and 2B in September 2018 (as discussed more fully below). As noted by one respondent in the December 2019 survey of families:

"Clinical staff provide timely and relevant information on… treatment. Someone is always available when we have questions. When I was stressed about a delay to surgery, nursing staff picked up on that and arranged for consultant to contact me."

Despite the pressures to provide regular communication on the infections and the impact that they had on day-to-day operations, the focus on providing a high-quality service was never lost in the engagement with the children, young people and families. The Oversight Board commends that commitment by staff in the hospital to keeping patients and families directly informed.

113. There was also evidence that the Health Board was capable of learning to address the challenges of maintaining complex and often prolonged communication with patients and families in difficult circumstances. A good example of this was the development of the 'closed' Facebook page for patients and families, as described in more detail in the box below. This Facebook page has been a critical means of alerting patients and families to key developments and issues as well as enabling them to raise important issues with the Health Board – indeed, the value of the mechanism has extended beyond the immediate infection issues for the patients and families, and developed into a means of supporting the group of families, children and young people for other issues. For example, it has become an important means of identifying and acting on issues affecting this group of patients during the Covid-19 pandemic. Although the key to its value is ultimately the responsiveness of the Health Board to the issues raised on the page, it was an innovative and useful tool that highlights the capacity of the Health Board to improve.

'Closed' Facebook page for patients and families

The decision to develop a customised Facebook page for the Schiehallion Unit patients and families emerged from the experience of using the existing social media services. In the first few months of 2019, public and media attention on the problems of the QEUH was particularly acute, increasing the need for families to find a way to express and discuss their concerns, seek and receive information, and engage with the Health Board on the continuing implications of the infections for their children.

In January, it was agreed that a 'closed' Facebook page would be established for the benefit of patients and families – a decision that was endorsed by the Board itself, commendably demonstrating the importance of improving patients' and families' communication within NHS GGC. A form of 'gate-keeping' of the page's membership would be provided by NHS GGC itself to protect the privacy of the discussions, but the forum was allowed open and full access to members.

The Facebook Group was launched in September 2019 for patients and families associated with their paediatric haemato-oncology service. Initially, the number of members was approximately 50, but over time, membership increased significantly; currently around 180 members are listed. It has the potential to become a central mechanism for parents to engage collectively with NHS GGC clinical leaders within the ward and the Board's staff who support corporate communication and engagement activity. Executive-level responsibility for engaging with patients and families has now been placed with the Health Board's Nursing Director – the first time a Board member was explicitly and visibly put forward in such a way.

Since escalation, families have expressed positive feedback about how the Facebook page keeps them informed of statements from Scottish Government Ministers as well as the work of other key reviews (and indeed, the work of the Oversight Board). There are some encouraging recent examples of this being used effectively to support dialogue with patients and families who have expressed concerns about (for example) the quality of the food in Ward 6A, including engagement on an event involving parents who wish to work with staff on improvement planning. While discussions on the pages are sometimes critical of NHS GGC, it represents a willingness by NHS GGC to support constructive debate and challenge for those most affected by the continuing problems and decisions taken by the Health Board, though it must continue to be used pro-actively and there remains work to ensure that this is done consistently.

114. NHS GGC has also undertaken work to ensure that individual children, young people and families have relevant communication/information specific to their needs and relevant of their histories. Not all patients and families have wanted the same level of engagement and information with the Health Board, and it was important to recognise their different circumstances and preferences. Given the sensitivities arising from the experience of many of these children and young people, it was also important that Health Board communications did not appear unnecessarily generic, but recognised a history of communication with particular families, and indeed, reflected the often difficult circumstances of their children that lay behind individual communications.

115. This led to the development of a specially-commissioned database to facilitate improved engagement with concerned patients and families and how they preferred to be contacted; the box below describes this in more detail. This as an important development that would be of value across NHS Scotland more widely. It has enabled communications to be formulated in a way that respects communication and engagement preferences, and clearly embeds a person-centred approach.

Database of contacts and communication preferences for patients and families

A database of contacts with the Scottish Government and NHS GGC was commissioned following the escalation of NHS GGC to Stage 4 in the NHS Scotland Performance Framework in November 2019. Based on the existing communication with over 400 families, the database compiles key information on preferences. It uses NHS National Office 365 SharePoint to capture the history of communication with particular patients and families. It has strict permissions settings in place and is sharable with colleagues in NHS GGC and Scottish Government links. The database supports improved oversight, makes it manageable to incorporate enhancements and changing requirements, and to add users. Its protocols can potentially be adapted to support future oversight requirements if/when Scottish Government/NHS Scotland coordination and comprehensive overview is required.

There is scope for improving the value of the database further. This tool could be supplemented by enhancing the existing family 'induction' packs with clear information on where patients and families could go for information about continuing issues such as the infection incidents. It also has applicability that goes beyond the paediatric haemato-oncology service, but could be deployed usefully whenever there is prolonged communication between the Health Board and a particular patient/family group.

116. Nevertheless, where communication and engagement went beyond the ward level – particularly with respect to 'corporate' communications on behalf of NHS GGC as a whole – there were a number of deficiencies. Such corporate communication has an essential role, as ward staff were not always the most appropriate channels for information, particularly when it involved a wider communication effort, targeted not just at the children, young people and families but staff and the wider public and media. In this context, the approach to communication and engagement by the Health Board did not consistently match the person-centred principles of its strategies.

117. This can be highlighted when considering how communication operated at specific points over the period. Key milestones in the timeline of infections spotlight how the Health Board acted:

• the decision to de-cant Wards 2A and 2B in the RHC in 2018;
• the introduction of a comprehensive water dosing system in 2018;
• the series of new infections in QEUH wards in 2019; and
• recent issues in the wake of the announcement of legal action.

All provided critical points when communication with patients and families was particularly sensitive, and are worth examining in detail.

Decision to De-cant Wards 2A and 2B in 2018

118. The decision to de-cant the children and young people from Wards 2A and 2B in the RHC to Wards 6A and 4B in the QEUH in September 2018 was one of the most visible and public milestones in the development of the infection incidents. Closing the wards would inevitably be regarded as an admission of the seriousness of the series of infection issues and open up the Health Board to potential accusations that it was not in full control of the situation. Consequently, good handling was vital.

119. The decision came on the back of a resurgence of infections within the RHC wards, leading to the restoration of the IMT after it had been stood down twice since March of that year. It was made relatively quickly, reflecting an urgency around the need to investigate the source of infections in the wards more thoroughly and mounting concerns by staff on the wards and families around the safety of the environment. It was also made at a point when concern, investigation and speculation had resulted in substantial disruption in the care of this group of children and young people. There was a significant physical/logistical challenge in ensuring that the new wards were altered to provide appropriate care for these vulnerable children and young people and manage the movement of patients on 26 September, but there was an equally important challenge in communicating the key information and the rationale to patients and families, addressing their questions while providing reassurance around the continuity and security of care.

120. The news was put out in a number ways on 18 September and the days that followed. For those on the wards, much of his was done through face-to-face briefing by the Chief Nurse and General Manager, supported by a written briefing for families. A hand-out, dated 18 September, set out the details of the de-cant. It highlighted the need for further invasive exploratory work on the source of infections, involving the drains as the primary reason for moving the children and young people, and emphasised the priority of their safety and care. The statement – which formed the basis of a media release the same day – did not offer details of where most children and young people in the Schiehallion Unit were moving to in the adult hospital (arguably a singular omission, given that the location had already been discussed in planning with senior management). On its own, the lack of detail on the nature and duration of the move would not have given sufficient reassurance to the children, young people and families. Nevertheless, the communication work – particularly through the direct support of those in situ on the wards – seems to have been effective in managing a sudden and sensitive change of circumstances for the patients and families. The challenge for the Health Board was not made easier by false information carried in news outlets that the de-cant had already taken place, resulting in distress in some families on which swift and targeted action was taken by senior managers within NHS GGC.

121. The de-cant was originally envisaged as a short-term move, and presented as such to patients and families. As the investigation of Wards 2A and 2B revealed a succession of environmental deficiencies, going back to the original construction of the wards, it became clear in the succeeding months that it was unlikely that the children and young people would be restored to the original wards soon, and the stay in Wards 6A and 4B would be prolonged. However, the communication of this to patients and families appeared to be faltering. No formal updates on the work on Wards 2A and 2B seemed to have been made to the patients and families through October and November 2018, and it was evident that staff were reluctant to discuss the changing work timetable until a fuller picture of the problems in the wards was known (in particular, staff were waiting on key external reports on ventilation before providing an update). The absence of corporate updates in this period would have not been reassuring to those already experiencing considerable distress and uncertainty. The decision seemed to have been taken that it was better to 'have something to say', but this lack of communication was not reflective of the Board's strategic commitment to person-centredness. It compromised the confidence and trust that families with ongoing concerns and unanswered questions had in the Health Board.

122. When an update was forthcoming in December, it downplayed the emerging environmental issues emerging from the investigations of the wards. Briefing to patients and families on 6 December 2018 cast the further delays as an 'opportunity' to upgrade the ventilation. This suggested a lack of transparency about the emerging scale of issues encountered on Wards 2A and 2B. While communications should be mindful of causing unnecessary alarm, the approach seems to have contributed to a deepening suspicion among some families that the Health Board was 'covering up' issues relating to the hospital building. While there is no evidence of deliberate concealment of any such information, throughout 2019, the formal updates to patients and families about progress with Wards 2A and 2B seemed intermittent and not transparent about either the real difficulties experienced with the programme of work or the delay to a return of the children and young people to the RHC. It was known in January 2019 that any prospective return to Wards 2A and 2B was unlikely to occur before the end of that year, but this does not appear to have been fully and openly communicated to patients and families likely to be affected by these decisions.

123. This apparent omission might be indicative of the highly reactive environment that the Health Board faced, not least in the early part of 2019, as there were a number of immediate communication issues on which action needed to be taken. But it reinforced an impression that NHS GGC was not forthcoming about key information regarding the situation with the building, leading to an avoidable increase in distress and subsequent deterioration in the relationship between some families and the Health Board.

Introduction of the Water Dosing System in 2018 and 2019

124. The installation of a site-wide, water dosing system was a decisive step taken by the Health Board to address what seemed to be mounting environmental risks in 2018. The decision was not taken lightly, but followed extensive options appraisal by the specially-created Technical Water Group and careful planning to manage its introduction with minimum disruption to staff, children, young people and families. The option was raised quickly by the newly-established Group in the early stages of the 'water incident' in the first half of 2018; by the end of the year, the implementation of dosing was completed for the QEUH and extended to the RHC through 2019. It represented the most emphatic action by the Health Board to address the risks of widespread water contamination, a significant achievement in terms of the speed and scale of response.

125. From a communication perspective, the use of comprehensive chlorine dioxide dosing has several important dimensions. It demonstrated the responsiveness of the Health Board and its willingness to 'do what was necessary' to mitigate risks to patient safety and provide assurance to patients, families and the wider public about hospital safety. At the same time, it needed to be explained carefully to ameliorate any concerns (not least among patients and families) that might have arisen about having to treat the water with 'chemicals' and the impact that could have on patient health. Moreover, there was a risk it could be framed by some as a Health Board admission that there was widespread water contamination in the hospital and the impossibility of removing the source of the contamination without such dosing action. There were communication implications that went beyond the paediatric haemato-oncology patient group, as the water dosing would affect a wider number of patients. As a result, careful handling of information and messages with patients and families was critical.

126. Dosing for the adult hospital was agreed in early November 2018, and a communication was to be issued as soon as the timeline for the work was finalised. It was not clear how this was widely communicated, either in the lead up to the point at which the adult hospital dosing system was put in place (28 November) or in the period afterwards through information presented to patients and families. In mid-January 2019, apparently following complaints made by some families directly to the Scottish Government about the more general quality of information being provided by the Health Board, briefing was provided about the dosing. However, the written information was opaque:

"It is also important to note that the additional measures to ensure water quality have been put in place for the whole site (QEUH/RHC) and these have been successful. Our rigorous water quality testing is demonstrating good results alongside the ongoing use of water filtration devices."

A fuller description of the chemical dosing system and its implications did not appear to be forthcoming in the following months, though references were made in subsequent briefings to patients and families. It further highlights what seems to be a different approach between what was communicated on the ward – where there would have been opportunities for direct questions from those patients and families present – and what was communicated through corporate channels.

New Infection Incidents in Wards 6A and 4B in 2019

127. The de-canting of the children and young people into Wards 6A and 4B should have been seen as an end to a period of severe anxiety about environmental risks. Consequently, the appearance of new infection incidents in the QEUH wards in 2019 caused renewed, if not higher levels of distress and raised further questions about the capacity of the Health Board to manage IPC. The new series of infections from June presented the Health Board with new communication challenges. At this point, the issues had features that were not present before. It carried a strong risk of suggesting that whatever action had been taken before had 'not worked' and that NHS GGC was not 'in control of the situation'. This was compounded by the difficulties that the IMT in the second half of 2019 faced in identifying the source of the new infections. As with the 2018 'water incident', strong IPC measures were required such as the closure of Ward 6A to new patients for a period, which led to disruption for the children and young people. The potential for undermining trust in NHS GGC was acute.

128. During that period, the Health Board endeavoured to keep patients and families updated on what was going on at different points. Verbal and written briefings continued to be provided after each IMT meeting, and a new dedicated Facebook group/page was established. While there was significant (and arguably inevitable) repetition of information across the different updates, the fact that they were being made was evidence of the Health Board recognising the importance of maintaining the flow of information to patients and families.

129. However, there seemed little open recognition of potentially deeper issues with regards to the environment. By this stage, the notion of widespread water contamination was becoming increasingly accepted – while the pathways and sources of infection eluded detection, the idea that the water system may have been contaminated at some stage in the construction/commissioning of the hospital was present in the HPS report on Wards 2A/2B and the accompany HFS report. The briefings to patients and families did not acknowledge these issues, but instead emphasised that "we have undertaken extensive testing of the ward environment and at this stage no link has been detected between the infections and the ward environment or our infection control practices" (as set out in an October 2019 briefing, but presented in similar phrasing in other briefings at that time). Patients and families were, of course, increasingly aware of the wider issues relating to the building, which meant that through this period there may have been a widening divergence between what several families understood from other sources and what they were being told by the Health Board.

130. Statements by the Health Board, of course, must be factually accurate. There is a risk in conveying perceived risks about the environment without fully understanding what is happening. Nevertheless, as more infections occurred in 2019, uncertainty around the environment would not go away, and communication efforts should have adapted to recognise and respond to that uncertainty. The lack of reference to these wider risks seems to have exacerbated a perception that the Health Board was increasingly focused on 'managing' rather than providing information. It reflected what appeared to be a greater priority on reputation management than regular, pro-active and supportive communication more explicitly informed by the perspective of patients and families. This approach to communication – one that provided messages that were supportive of the organisation but did not consistently respond to individual patient concerns – seemed to have diminishing returns with an (understandably) increasingly vocal and expanding group of families that were unhappy about the lack of transparency in what was going on. By not openly acknowledging more readily what was not known about the infections, the Health Board created the impression that it was simply hiding something that was alleged to be known about the building. This potential trap is perhaps most tellingly demonstrated in the following more recent milestone.

Recent Issues Following the Announcement of Legal Action by NHS GGC

131. Since the Oversight Board was established, NHS GGC has announced that it was launching a legal case against the QEUH builders, Multiplex. As a result, the Health Board has become notably more sensitive to communication that could have a bearing on the conduct of the legal case, and as a result, has become increasingly reluctant to comment or discuss aspects of the infection incidents and the related issues, citing the risks of compromising the forthcoming legal case. This featured recently in its responses to the Independent Review's report on the commissioning, design, construction and handover of the hospital complex and a BBC Scotland Disclosure documentary on the QEUH (which aired in June 2020), when the Health Board was notably limited in its response to the issues raised. This has exacerbated a sense among several families that the Health Board had continued not to pursue a policy of transparency and sensitivity to the affected children, young people and families.

132. The Oversight Board appreciates the legal sensitivities facing the Health Board, particularly where it is likely to be made on the back of internal legal advice, but considers that continuing reluctance to be more open on many of these issues is exacerbating rather than resolving the fundamental concerns on communication and engagement that gave rise to escalation to Stage 4. This is particularly relevant given that the timescales for the legal action are not clear at this point, but could last for a prolonged period. A better balance about engaging on the challenges and history of addressing the problems of the QEUH is needed if there is to be restoration and trust in the Board's commitment to, and delivery of pro-active, transparent, compassionate and supportive communication and engagement where patients and families express concerns or ask questions. This should be irrespective of the number of families involved or any perceptions regarding their 'representativeness' with respect to the wider group of affected families.

Observations

133. All of the incidents described above show strong direct communications, but problems with corporate communication to the wider group of patients, families and ultimately, the public. There seems to be several recurring themes.

134. First, there was a lack of timely information on what was known about the infection issues and what actions were being taken as a result. Points raised by some families included:

• a widespread feeling that the Health Board was slow to respond to specific queries put to them about their children's care (for example, concerns in respect of the time taken to respond to the issues later reflected in the summary of 71 questions and issues that were put to the Cabinet Secretary for Health and Sport by family representatives in late 2019), and that communication with patients and families could sometimes 'lag' official press releases on media stories;
• suggestions that patients and families were hearing about key information through the media and press releases by the Health Board, rather than directly, adding to an impression of too often being 'kept in the dark'; and
• in a few cases, allegations that the Health Board was not answering questions "properly or truthfully", as one of the respondents to the family survey noted.

135. Such comments have been persistent across the period. For example, suggestions that there was a lack of transparency by the Health Board were made by some families at the start of the 'water incident' in March 2018. They have continued through to more recent discussions and the reaction of families on the Facebook page to the BBC Disclosure Scotland documentary in June this year. Across the period, communication did not always demonstrate to these families a clear, person-centred tone in addressing such sensitive issues. The work by Professor Craig White as 'family liaison' to support the way NHS GGC was drafting its public messages from late 2019 also highlights the need of the Health Board to develop more person-centred language in how it reacts to critical media stories.

136. Several families, particularly those with prolonged and continuing engagement with the Health Board because of the care and circumstances of their children, felt that the Board was often reluctant to provide direct answers to their questions and information about the hospital. This reluctance was fed by a sense of sluggish responses to questions posed, a strong impression of information being partial or misleading and a belief that the Health Board would not admit any mistakes that might have been made regarding the environment of the building or the care of their children. These views were not shared by the Health Board, and it was occasionally suggested that the responses reflected a minority of families that were explicitly expressing their views. Nevertheless, it was clear that the views of several families became more entrenched over the period, and that any communication and engagement efforts by NHS GGC to address distrust and lack of confidence in the Health Board did not fundamentally shift this sense of distrust. The obligations of the Health Board to respond openly, compassionately and supportively to any patient or family who raises concerns has not been consistently evident in the thinking, decision-making or actions of senior staff.

Scope for Improvement

137. While the Health Board has strived to learn from the unique situation it faced, there remains a continuing need for improvement in how communication, engagement and information provision takes place. Part of this requires a fuller understanding of the challenges facing the Health Board with respect to communication, not least in terms of national learning to be gained from how to respond to infection outbreaks.

138. One key challenge was how to communicate a complex set of issues where uncertainty would not go away. This uncertainty had different dimensions to it. The exact source of infections was not clear throughout the period –- this proved a complex problem for the Health Board through 2018, where the picture of what was taking place developed incrementally. Knowing what and how to communicate with children, young people and families in this situation was not relatively straightforward. This was complicated with the difficulties of engaging with patients and families who were no longer in regular contact with the service. In particular, the timing of when to update patients and families was often hard to determine, not least in an environment of significant media scrutiny. Providing timely, full information to families was not always easy. Social media was a particularly complicating factor, as it could convey stories more quickly than the Health Board was accustomed to responding act as an amplifier – if not in some cases, a distorter – of some of the concerns being expressed. At the same time, the Health Board was seen as slow to take advantage of social media as a means of communicating with patients and families, and indeed, the wider public, about key developments, or addressing any misconceptions being disseminated.

139. Nevertheless, while these challenges made communication decisions more difficult to take forward, there are several areas where NHS GGC must take action to ensure the delivery of necessary improvements:

• the communication responsibilities of IMTs;
• coordination between different teams/services in communication;
• communication with staff;
• visibility and approach of senior management in communication; and
• the role of external bodies in supporting communication.

Incident Management Team Responsibilities

140. In line with national practice, the responsibility for communication decisions is typically lodged with IMTs – what to communicate, when and through what media – with communication advisors providing support and IMT Chairs with a key role in taking decisions. Throughout 2018 and 2019 in particular, IMTs were clearly active in response to communicating the infection incidents.

141. IMTs are often necessarily focused on specific outbreaks. While understanding a wider context of infection can be critical for determining the source and mitigation, the idea of a communication context to outbreaks seems less well appreciated. For the children, young people and families affected, a series of infections may appear part of a single continuum of events, potentially marked by escalating anxiety and disruption. This perception of a continuing 'crisis' did not seem to inform the approach to communication across the period, where actions were regarded typically in terms of addressing short-term issues. The IMT process, while useful for these more incident-based situations, was potentially less effective for a prolonged scenario when a number of incidents could be linked together by patients and families (and as became the case in 2019, in the eyes of the media, politicians and the public).

142. A better process should be identified to allow for infection incidents to be more explicitly considered within that broader context. This should take full account of previous communications, consistency in messages where appropriate and the recognition that the audiences of these communications have changing expectations of what they want to know from the Health Board as the 'crisis' develops (particularly if initial questions about the source of infections cannot be quickly addressed). The learning for NHS GGC here would have a clear national dimension as well. Such a process may involve shifting some communication responsibilities away from the individual IMTs when it becomes clear that the incidents are being seen in a larger context. This would need to have clearly defined triggers, roles and responsibilities. This was particularly evident in relation to the responsibilities for developing and issuing press releases, as it was not clear to the Oversight Board where full responsibility was being exercised and the extent to which this was led by IMTs in practice.

Coordination of Communications

143. Infection issues can draw in the work of several services within the Health Board, including clinical staff, the IPC Team, Facilities and Estates, and senior managers. Clear coordination and a common approach to information, messages and the culture of communication is essential.

144. NHS GGC was not consistently integrated in its communication in this context. Key messages, especially when delivered directly on wards, would have often benefited from a more systematically joined-up approach, particularly between the IPC Team and facilities/environment personnel. Some families had reported that while ward-level communication was delivered compassionately and usually at the right time, that communication would have been more effectively delivered if they were made with the visible involvement of other staff who have a clear link to what was being communicated.

145. This was particularly highlighted for issues relating to changes in the estate and the physical environment as a result of the incidents – whether local changes such as the use of water filters on taps in rooms or wider changes, such as the de-canting of the whole of Wards 2A and 2B. Assurance would have been more strongly communicated to patients and families had these messages been more regularly undertaken jointly by clinical and Facilities and Estates staff.

146. Overall, the Health Board's corporate messaging needed to be more joined up in terms of recognising the range of activity that was taking place at any one time. The issuing of single-narrative corporate briefing points to NHS GGC's recognition of the importance of a common message. But as these briefings sometimes needed to be supplemented with questions directly posed by the families, it resulted in ward staff sometimes appearing not fully informed enough to address the concerns presented to them. This was particularly true in 2019 with the new series of infections in the QEUH wards, when many of the families' questions related to more technical, environmental subjects that were best addressed by Facilities and Estates staff. As a result, the consistency of the information and messages across different levels of the organisation was not evident across the period, adding to the frustration experienced by some families and putting more pressure on ward staff.

Communications with Staff

147. This chapter has focused on communication and engagement with patients, families and the public, but there was an equally important need to provide regular information and reassurance to staff as well. This was important because of the duty of care of the Health Board to its staff, recognising their concerns about working in a potentially 'unsafe' environment as well as their natural compassion for their patients. It was also critical given the vital role that staff – especially those on the wards – played in providing information to patients and families. Communication with staff was another aspect of wider engagement with the public.

148. Staff concerns were evident throughout this period. While the concerns about the risks of the building tended to be expressed by individuals before 2018, from the 'water incident' onwards it became a continuing source of anxiety for groups of staff. For example, in September 2018 (before the de-canting), staff in Wards 2A and 2B were reported to have been visibly upset and anxious at a staff information event, and some approached their union for advice about the safety of their patients remaining within the ward. Specific decisions could raise concerns, such as the blanket use of anti-fungal prophylaxis as part of the IPC measures – in December 2018, some medics expressed concerns about the prescription of prophylaxis, as several children had experienced severe reactions. Moreover, when the Cryptococcus neoformans infection was drawing intense media scrutiny in early 2019, staff were reporting their own respiratory problems that they felt might be linked to ventilation /infection issues.

149. The Health Board responded actively to these concerns: there were regular briefing updates to staff (often weekly during the most intense periods), face-to-face meetings with senior hospital managers and active engagement by the IMTs through the Lead Infection Control Doctor. The commitment to keep staff up-to-date and supported through this period was evident, and there is no suggestion that the Health Board was not forthcoming to its staff about what was happening.

150. Nevertheless, while the regularity of such communications may have allayed anxieties, they could not remove them, for the same reason that some families remained dissatisfied with Health Board communication efforts. The prolonged uncertainty around what was causing the infections and the risks associated with the building could not disappear, forming an ever-present background to healthcare operations on the site. Moreover, as set out already, the apparent reluctance of the Health Board to be more forthcoming about the risks and issues around water contamination was making this issue of how to be open about what was known, and what was not known, as critical for staff as it was for the children, young people and families.

Role of Senior Management in Communication

151. While frontline staff were seen as important communicators, especially by the patients and families, it was not always appropriate for them to communicate on issues related to more corporate responsibilities, and where high-level decisions (such as de-canting or temporarily closing wards) were being taken. The perception of some families was that frontline staff were 'unfairly' put in the position of communicating 'difficult' messages.

152. Moreover, there was a strong feeling among some families that senior management in NHS GGC were not sufficiently and consistently visible in speaking/communicating with them at an early stage. While acknowledging that communication roles were rightly placed at different management levels within such a large Health Board, the nature of the incidents, particularly when such disruptive steps such as de-canting had to be taken, required a clear and unequivocal demonstration of senior leadership in communication. Its perceived absence was regarded as a key factor in undermining family confidence in NHS GGC to address these issues.

153. Senior management in NHS GGC did remain close to the development of the issues at different stages, but the importance placed on what was happening to the children, young people and families was not always communicated widely and effectively by those with Executive responsibilities. There was a gap between the perception of some families that senior Board management in NHS GGC were not closely involved with the emerging infection issues and the evidence that they were being regularly monitored by the Executive team within NHS GGC. This appeared to be an issue of visibility in many cases, and in retrospect, there were missed opportunities to highlight the priority with which this was being considered at senior levels within NHS GGC. As the issues became more prominent in the media, several families commented that more direct engagement with more senior staff within NHS GGC at an earlier stage would have helped to bolster confidence, and defuse much of the tension that has continued to play out publicly.

154. Senior leaders within NHS GGC did become directly involved, with letters to families from the Chief Executive being issued later in this period (including a letter of apology in early 2019) and opportunities extended for families to meet with them. In this context, the Oversight Board welcomes the identification of the Nursing Director as the key Executive for communication with families by the Health Board. It further suggests that more visible senior leadership in communication with the public and with the children, young people and families at an earlier stage should be systematically considered to inform future practice.

Support from External National Bodies

155. The Health Board admitted that the complexity of the communication challenges meant that it could have benefitted from greater external support and advice in how to handle patient, family and public expectations. That support was not perceived to be present for much of the period, and indeed, it is not clear that this kind of support is regularly provided and coordinated across NHS Scotland. As a result, there is national learning to be gained in the external support and positioning around Board communication. The role and coordination of messaging by external bodies, particularly HPS and the Scottish Government, could also improve to ensure that these issues are not regarded as exclusively local.

156. In this respect, the difficulties faced by NHS GGC should not be regarded as exclusive to it, but potentially something that can be shared by other Health Boards facing similar situations and acting within the existing expectations and approaches to communication. Just as there are national bodies on hand to provide centralised specialist expertise to the Health Board in terms of the IPC challenges, similar national consideration should be given to having analogous expertise and advice on communication and engagement as well.

Remaining Work

157. As well as a general responsibility to inform patients, families and the wider public through the infection incidents, the Health Board is subject to a series of specific duties to investigate, inform and enter into dialogue when harm occurs in hospital settings. These duties are governed by a range of legislative, regulatory and guidance frameworks, but they all require compliance of Health Boards in the fulfilment of defined actions. They include:

• the organisational duty of candour: this is a legal duty which sets out how organisations (such as Health Boards) should tell those affected that an unintended or unexpected incident appears to have caused harm or death, and which requires the organisations to apologise and meaningfully involve those affected in a review of what happened – the Communication and Engagement Subgroup has undertaken work on this area, but that work will need to be linked into the wider assessment of reviews set out below;
• reviews of Significant Adverse Incidents: a national framework now exists to provide an overarching approach for best practice in how care providers effectively manage adverse events; and
• morbidity and mortality reviews: the reviews of patient deaths or care complications are designed to support organisations improve patient care and provide professional learning.

158. It is important that the Oversight Board can provide assurance that these obligations and commitments to good practice were met during these incidents. The Oversight Board is continuing to review these matters and will report its findings in the Final Report.