An evaluative case study of the mental  health and wellbeing response to the Grenfell Tower fire; Lessons for disaster preparedness and management

Public and patient involvement

The authors sought the advice and guidance of Grenfell United when developing the project and the grant application. Two service user consultants were involved in discussions about the study aims and objectives. JG and JA presented the main findings to service user groups prior to the completion of this paper. We will involve PPI presenters in planning and delivering public presentations to disseminate the results of this study and to provide context.

Costs

The direct costs of the fire and its aftermath were enormous. Charitable funders raised millions¹¹ mostly distributed or spent by VSOs. RBKC and national government provided large scale funding which provided direct humanitarian aid to those affected, funding for 92 local and national voluntary sector organisations (VSOs) and enhanced statutory services, as well as the purchase of property to rehouse survivors. The NHS set up specialist services to meet the mental and physical needs of bereaved and survivors (BSRs), close witnesses, emergency services personnel, and other helpers. By 2023 partial estimates of overall costs of the fire had reached almost £1.2 billion,¹² most of which fell on the public sector. This figure was certainly an underestimate. Indirect costs like loss of income, benefits payments or impact on local businesses were additional to direct costs.

Available information on spend by different agencies was reported for different time periods. From June 2017 to the end of March 2019, RBKC made a total revenue expenditure of £135 million¹³ on Grenfell (Item A5). Of this £41.2 million was spent on social care and wellbeing including funding many VSOs. RBKC also spent £56.5 million on housing, mainly temporary accommodation for the evacuated. This figure did not include capital costs - £302.3 million - for replacement homes, compensating leaseholders and maintaining the Grenfell site.

Local NHS commissioners reported spend from the fire to December 2018 of £16.4 million¹⁴ for all local NHS services including additional Grenfell-specific community, enhanced primary care, acute and mental health costs but did not separate the different elements. Total CNWL mental health and wellbeing spend for the whole two years to end of July 2019 was £11.9 million, which included a small element to reimburse spend by other NHS providers. NHS figures do not include NHS emergency acute care costs, or national or local authority spend on public health and substance misuse services.

Overall spend on specialist mental health was substantial but a small fraction of the overall costs of the disaster, and lower than spend for wellbeing and for humanitarian aid, which in turn was a fraction of overall costs of the disaster.

Management of the response

In the UK, each local authority is responsible for drawing up a local emergency plan¹⁵ which includes NHS and voluntary agencies. It is also usually responsible for developing and co-ordinating any longer-term recovery plan. Beyond this, there exists also regional scrutiny and co-ordination. Local authorities and NHS providers have their own emergency planning relating to operations and implementation. These plans mainly focus on the key roles and responsibilities which are necessary to manage a response, rather than on specific actions (because in many cases these will vary between disasters). There are regular local and regional multi-agency “tabletop” disaster rehearsals.

While guidance on the immediate emergency response is extensive, that for the recovery phase¹⁶ is less so. Different elements of guidance are updated at various times and published separately by, inter alia, central government, public health agencies, the NHS and local government. Ideally published guidance from different agencies would be brought together in a central site for easy access. We observed that while organisations understood their own roles in the Grenfell response, some important issues were less well understood. For instance, there was no local cross-agency emergency data-sharing protocol in place prior to the fire althoughhttps://www.gov.uk/government/publications/data-protection-and-sharing-guidance-for-emergency-planners-and-responders Cabinet Office guidance¹⁷ after the 2005 London bomb attacks had drawn the issue to the attention of agencies. There was initial uncertainty in some agencies about what personal information could, and could not, be shared within and across agencies without individual consent during the early emergency Civil Contingencies Act¹⁸ period. Since Grenfell there has been specific guidance from the Information Commissioner¹⁹ about data sharing during emergencies. A formal local cross agency agreement also had to be put into place about data sharing in the recovery period after the disaster. Sharing of data was an issue of very significant concern to community members and their legal representatives, reflecting a general lack of trust as well as ongoing litigation for damages for affected people.

Those planning for data sharing should consider not only what is permissible in law, but what is acceptable to service users. Informing communities and individuals if and how their data is shared is not only their legal right; it is vital if trust is to be built and maintained.

Reading pages and pages of guidance is rarely feasible in the emergency phase of a disaster, rapid reference materials like checklists and model Standard Operating Procedures can be very valuable and should be in routine use. We include an example of how these can be structured ( Table 1). Statutory service planning processes can be slow and cautious. In a disaster, rapid decisions are often needed. GHWS operated what was effectively a short cycle Plan Do Study Act (PDSA) approach to developing services, as well as more formal long-term planning. The PDSA approach of planning quickly, acting, and then examining the results rather than trying to achieve perfect plans at first pass is quicker and sometimes better suited to situations of uncertainty.

Managing a response requires using large amounts of data; external and internal demands for information in the response were extensive. Some NHS patient record (PAS) systems can be inflexible and slow and costly to adapt, and, at the time of the fire at least, some had only very basic analytics built in. A patient’s health record may be split across several systems, as was the case in Grenfell, and systems are not ideal for some tasks, for instance community screening, since they require extensive registration details and that can deter some people from being screened. All this means that managing and sharing information across organisations to provide care becomes challenging.

Data volume can be prodigious. Collection of data is only one part of the problem. GHWS started with one part-time data analyst, which was woefully inadequate; it increased over time to having three busy full-time analysts. CNWL made public information on key aggregate numbers, for instance overall numbers being seen, and it responded where possible to specific press and public queries. Transparency is important or misinformation will spread, and the response was high profile and attracted considerable public interest.

The arrangements for the management of a disaster in London are complex²⁰ and detailed analysis is beyond the scope of this paper. In the Grenfell response once the immediate emergency was contained responsibility for strategy transferred to a Recovery Co-ordination Group (RCG) and associated sub-groups set up within the London Resilience Framework²¹ of the London Resilience Partnership, a London-wide local government led system²² for the strategic management of large-scale major incidents. A wide range of key agencies including local and regional government, the police and the NHS were part of this system. Usually, responsibility for the co-ordination of the longer-term recovery programme would pass to the local council quickly. However, the intense political and community disquiet meant that, although RBKC was active in providing staff and resources throughout the post-fire period, and was a part of the RCG, the RCG continued to be involved strategically at least until September 2017 and for some specific issues, longer. Central government also set up a Grenfell Recovery Task Force to assist and advise RBKC about (and report back to ministers on) their recovery programme which issued a series of reports on progress^23,24 In January 2018 RBKC published a long-term recovery plan after lengthy consultations with the local community.²⁵

Additionally, the Prime Minister convened a central cross-government committee immediately after the fire to ensure people’s immediate needs were met. The resilience arrangements, at least over the first month, were criticised by the Grenfell Public Inquiry²⁶ which did not feel they had worked wellhttps://webarchive.nationalarchives.gov.uk/ukgwa/20250320200236/https:/www.grenfelltowerinquiry.org.uk/report/phase-2/volume-7.html.

A decision was taken that keyworkers, who could provide individual case support to those worst affected, should mainly be local authority professionals, rather than drawing primarily on national organisations like Victim Support.²⁷ Professionals were provided through mutual aid, an agreement under which one local authority will provide staff to another local authority on a short-term basis to meet the demands of a disaster. The unanticipated duration of need challenged this approach. There were complaints from those affected that turnover of management and keyworkers sometimes compromised continuity at a time when stability and relationship building were desperately needed. There was a lack of clarity about who should have a keyworker and why. By November 2017, 1344 individuals had keyworkers, mainly the Bereaved and Tower Survivors (BSRs) and other individuals who had been evacuated. By Spring 2018, this number had risen to almost 2000. Having a keyworker had a symbolic value, even though for some people other resources including the multiagency resource centre, located at a building known as ‘the Curve’, might have met their needs better.

Although recovery guidance often talks of the need to involve the community from the initial days, fractious relationships between RBKC and some existing and emergent community organisations made this challenging. Given the deep lack of trust in RBKC a community-based organisation might have co-ordinated the longer-term recovery programme, but there were none with sufficient scale and acceptability to all local voices which could have taken on such a huge role at such short notice. Grenfell illustrates just how difficult replacing the role of the local authority is in a UK disaster, but it also shows just how important it is to incorporate local communities into the advance planning and ongoing management of disaster responses in a meaningful way.

The role of Director of Public Health (DPH), which lies within the local authority, has an astonishing range of responsibilities²⁸ of which leading on key elements of emergencies is only one. Local authority Public Health departments have shrunk over recent years and the importance of interpreting data has grown. Thought might be given to how realistic it is to expect DPHs to take on such a large role in emergencies without further investment.

A key role of Public Health is the provision of intelligence to organisations, to the local community, and to the public. Within this, the public health needs assessment²⁹ for Grenfell was invaluable and far ranging and there was ongoing public health monitoring. Some public health areas, though, were more problematic. After the fire there was, for example, enormous concern about environmental contamination. A small study using limited data seemed to confirm these fears³⁰ but a large independent study³¹ did not. There were many anecdotal reports of a “Grenfell cough”, perhaps referencing the WTC cough, reported after 9/11^32,33 although levels of contamination in the local area were not comparable. Toxic contamination is a major public concern. It is predictable that these concerns will be magnified after any disaster involving fire, toxic chemicals or, potentially, flooding. Robust rapid proactive public information procedures - and monitoring where necessary - should be part of disaster planning.

In 2017, the NHS operated an internal market system originally established by the Health Service and Community Care Act 1990,³⁴ modified by the Health and Social Care Act 2012.³⁵ The internal market separated purchasing/commissioning and delivery. As in other disasters³⁶ this was too restrictive a model for a disaster. CNWL, the main mental health provider, and West London Clinical Commissioning Group (WLCCG), i.e. the commissioner, shared staff and had joint operational meetings. A partial reversion to an internal market approach did re-emerge over time. Changes in NHS management nationally now stress partnerships.

Many affected people were unhappy with the idea of the NHS and VSOs co-operating with RBKC, but some co-operation was necessary to provide services, since Health and Social Care inevitably overlap. Also, some health services, for instance substance misuse services, are commissioned by local authorities and the latter are key commissioners of VSOs.

Early after the fire Grenfell United (GU),³⁷ the first and largest of organisations representing those affected, was set up by Bereaved and Survivors (BSRs). The importance of GU in shaping and guiding the whole Grenfell response cannot be overstated, the link above shows some but by no means all the ways they were involved. Other organisations representing BSRs and other affected people emerged over time and engagement with these was vital. Statutory services should listen to, encourage, support and involve organisations representing those affected after a disaster. Engagement must be more than merely token. Simply having a member of the public on the committee is not adequate.

Mental health and wellbeing

The aim of the response was mental health and wellbeing. “Wellbeing” has multiple definitions including those by the American Psychological Association,³⁸ Centres for Disease Control and Prevention³⁹ and the Organisation for Economic Co-operation and Development.⁴⁰ It overlaps with, and is sometimes treated as synonymous with, “life satisfaction” and “health”.⁴¹ But it is distinct and enormously important. By “wellbeing” we mean a broader quality of life, somewhere safe to live, enough income to support a decent life, opportunities for a fulfilling social life, education, and work if appropriate.

Part of the issue in any disaster response is what the tasks are and who should do what. Multiple agencies are involved or potentially involved in the care, treatment, and support for those affected. Figure 1 shows a diagram discussed early in the response to try to address this particular issue. This model was not eventually adopted but it illustrates some key issues that need to be thought through in disasters, particularly what needs there are and how they can be met. Pyramid or triangle models are not infrequent in the disaster literature for instance in WHO emergency guidance.⁴² The number of steps varies and sometimes percentages are put in although the huge heterogeneity of disasters will often make such an approach misleading. We think such models are a useful reminder of the multiple needs of those affected but of limited value for planning. GHWS staff had been involved in discussions on a more complex (at least from the point of view of mental health) London model⁴³ immediately before the fire. It is worth noting that NHS emergency clinical guidance⁴⁴ provides a briefer overlapping model which differs in detail in places (p88).

Figure 1. Draft adult mental health triangle of need discussed early in the response.

The proposed model was simple and clear and had many virtues, but it was flawed, as early models often are. RBKC found working with the local community challenging early on, because of community anger and mistrust, making a co-ordinating role difficult. That led to the NHS stepping into broader wellbeing issues. For instance, the NHS provided staff time to support over 300 meetings and training events run by VSOs and statutory organisations. It did not seek to coordinate VSOs but to partner and support them. At the Public Inquiry, the NHS also provided support to BSRs, and others affected. Such support has been a common part of UK inquiries since at least the Saville Report.⁴⁵

Secondly the model should have included wellbeing. Wellbeing and mental health are intertwined. Wellbeing affects psychological treatment outcomes⁴⁶ including after disasters⁴⁷ and mental health problems undermine wellbeing. Interventions for these things are not interchangeable, both are needed, but they are linked. And people’s needs are not static; they change over time.

Thirdly the suggested interventions were not ideal. Mental Health First Aid (MHFA) is widely taught and raises awareness but there is little evidence it improves client outcomes^48,49 Trauma Informed Care (TIC) training is widespread and aids better understanding of the mental health issues of individuals, but it needs to include the provision of specific evidence-based trauma interventions if it is to affect service user outcomes. Without those, and unfortunately, they are often missing, the impact on trauma symptoms is disappointing⁵⁰ Psychological First Aid (PFA),⁵¹ reduces immediate distress after a traumatic event and so should be provided early on, although there is no convincing evidence that it prevents later PTSD.⁵²

Ultimately the most important problem with the model is that it is a commissioning model not a delivery model, it is about dividing tasks between agencies and that is not always the right approach. For delivery a list of key tasks is needed, and decisions taken about who is best placed to deliver on each task, which tasks can best be delivered in partnership, and what contribution different organisations can make. Lines need not be rigid in partnership working. Evidence-based expert PTSD treatment provision fell mainly to the NHS because that was where specialist expertise mostly lay. However, some specialist mental health VSOs did provide such treatment for specific cultural and religious groups, albeit on a smaller scale, with the NHS providing supervision and support if needed. By contrast, for instance, the NHS did not have the resource to intervene immediately after the fire in the widespread problem of emergent insomnia. There are effective guided self-help packages for insomnia which could with training and supervision have been delivered by non-specialist VSOs at scale⁵³ if they had been planned for in advance. It is important that VSO involvement in mental health after disasters should not be limited to those VSOs which specialise in mental health, as is sometimes assumed.

The NHS needs to think more carefully about where the balance lies between providing treatment itself and sharing skills, supervision, knowledge, and logistic support with VSOs both in disasters and, just as importantly, in everyday service provision.

Senior GHWS staff had been involved in other disaster responses and in London-wide expert discussions immediately before the fire. That was invaluable. Regular update meetings on the clinical care of individuals affected by disaster should be routine at a regional level as well as meetings on overall disaster management.

The adult mental health response

The mental health response to Grenfell was based on the natural history of psychological responses to disasters.

The public expects a vigorous mental health response to a disaster. Far more people are likely to be injured psychologically than physically. Grenfell attracted considerable media and public scrutiny. Trauma fascinates people; a search for “PTSD” and variants on Amazon books returns thousands of hits with one book a US bestseller for months.⁵⁴ Not everything the public and professionals believe is accurate.⁵⁵ Those delivering a mental health disaster response should expect to be challenged as for instance by the findings of the National Emergencies Trust report⁵⁶ on the Manchester arena bombing response.

Immediately after a disaster many affected will be distressed, although a minority will not. Symptoms like insomnia, anxiety, and low mood are quite common. In some cases, the distress is disabling and some people may meet the criteria for a diagnosis of Acute Stress Disorde r https://www.ptsd.va.gov/professional/treat/essentials/acute_stress_disorder.asp. Many people who are distressed will experience a significant fall in distress over 4–6 weeks even without treatment, although individual symptoms may persist for longer. In a sizeable but variable minority symptoms will not reduce and may even get worse. Some people will later develop PTSD who did not have severe initial distress.⁵⁷

People need information to understand what they are experiencing and to know what to do and when to seek help. Immediately after the fire, GHWS distributed the excellent NHS trauma leaflet⁵⁸ widely in the community and, jointly with the British Red Cross (BRC) and community volunteers, went out to talk to people in streets, hotels and their homes. BRC trains its volunteers in PFA. A proportion of those affected will need further advice, assessment, monitoring and – in some cases – treatment if they are severely distressed and functionally impaired. GHWS provided a route for escalation from PFA as well as taking referrals from other referrers, including primary care and self-referrals. CNWL had a telephone single point of access for referrals and for advice to referrers. This also took “warm” transfers (the operator stayed on the line until transfer was complete) from NHS111, the national NHS telephone advice line, arranged through Healthy London Partnerships (now succeeded by Transformation partners in Health and Care⁵⁹). It was important to have a wide range of entry points into the system.

Having contact details for those most affected greatly facilitates providing rapid help. There was a delay of several days in the NHS receiving a list of tower survivors, and of the hotels they had been placed in. The survivor list was not completely finalised until months later, after police forensic work was completed. Fraudulent claims by individuals clouded the picture. There was no community list. Police were overwhelmed and unable to furnish a list of community witnesses who had agreed to be contacted by the NHS.

The NHS offered walk-in services, initially at the Westway Humanitarian Centre.⁶⁰ A team included mental health professionals, primary care doctors, and community nurses. It provided information, triage, and onward referral with some treatment of minor injuries and repeat prescriptions for the evacuated, some of whom had lost access to their medication. Over 12 days 473 individuals were seen. Of these many had at least some mental health component, but physical health problems were common. This sort of “one-stop” provision is an important service. Westway (a sports centre) was not physically ideal, it did not have enough private consulting space and with many different services in the same building it could be hard for people to find the service they needed.

Nonetheless there is clearly a demand for a walk-in service early on after a disaster even where, as in Grenfell, there were other options available to people to get help.

PTSD can be diagnosed after one month in the DSM-5 diagnostic system. Usually, a substantial minority with PTSD will recover without formal treatment, mostly in the early months. Recovery rates without treatment then decline over time until they become minimal. There is considerable variability in spontaneous recovery between disasters as there is between different populations affected by a particular disaster. For instance, there is no reason to suppose rates or trajectory will be the same in first responders as in community samples⁶¹ and close witnesses. Some people will develop chronic unremitting PTSD,⁶² a pernicious, potentially severely disabling condition. We cannot predict who will recover spontaneously and there is currently no reliable way of preventing PTSD developing. Treatment for PTSD needs, therefore, to be offered at scale after a disaster.

PTSD is not the only condition common after disasters, including in young people.^{63,64,65,66,67} Some of the bereaved will experience severe grief which usually eases with time, but which can turn into Prolonged Grief Disorder, which requires treatment. Depression, specific phobias, and increased anxiety are all common after trauma. We refer to diagnoses resulting from trauma as “trauma spectrum disorders” (TSDs). Treatment provision needs to include the range of TSDs, not just PTSD. In intervening it is necessary to consider not only symptoms and diagnosis but also an individual’s cultural, social, and contextual factors and the uniqueness of individual experience and circumstances. In other words, treatment should always be tailored to a particular individual. The basic principles underlying psychological interventions appear to be generally applicable, for instance across cultures^68,69 but adaptations will likely need to be made to how they are presented, explained, and delivered if outcomes are to be maximised in different populations. Not only mental health interactions, but all interactions with those affected need to be culturally competent.

Emergency responders are themselves at risk of PTSD and other TSDs⁷⁰ Delayed onset PTSD is more prevalent in these populations^71,72 perhaps because of cumulative exposure.

Existing occupational health arrangements of employers involved in the response met some needs but not all. GHWS provided services to emergency responders, particularly police, but also some firefighters. More than 700 police officers involved in the response were offered screening and/or assessment and, if needed, offered treatment. Most of this work, included in additional NHS England funding,⁷³ was after the period covered by this paper. Fire services personnel⁷⁴ had attended from across a large geographical area and most were seen by local health services or by the Fire Services own systems. In October 2017 the College of Policing issued joint guidance⁷⁵ with coroners about the welfare of responders to mass casualty events.

Statutory and voluntary organisations often found staff struggling with stress and in some cases personal trauma (many lived locally). Most large organisations had externally contracted Employee Assistance Programs. These varied in their ability to deal with traumatised individuals. Some were good, others quite limited. They had often been commissioned with a cap on the number of sessions offered initially, typically six, albeit sometimes with an option to extend (usually at extra cost) if needed.

More broadly, organisations sometimes lacked robust plans to provide support to their staff through management structures and to monitor staff wellbeing. Internal resilience needs to be part of organisational planning for possible disasters. GHWS, which had supervisory arrangements in place, did not see any vicarious trauma amongst staff. In planning for disasters, organisations need to make sure they have appropriate systems in place to support staff resilience.

GHWS offered Trauma Focussed CBT, Eye Movement Desensitisation (EMDR) and Narrative Exposure Therapy (NET) as first line treatments for PTSD. It offered a wide range of therapies including CBT, counselling, and various psychotherapies to those with other TSDs and also for PTSD for those who did not want first line treatments. GHWS provided stabilisation and support to those who were not ready to accept specific therapies. Stabilisation is less challenging for the patient and can have some impact on trauma symptoms.⁷⁶ The hope was that for some people stabilisation and support would be a bridge into treatment. GHWS was able to draw on the Woodfield Trauma Service⁷⁷ to provide extra specialist treatment capacity, as well as additional training for GHWS staff.

Medication is not as effective as therapy but has a part to play in some cases as an adjunctive treatment or where patients do not want, or benefit from, therapy.

Some BSRs took up offers of insurer-funded private healthcare for mental and physical problems, particularly imaging, respiratory and other acute medical tests. The UK legal system encourages insurers to mitigate any harm caused by the possible negligence of the insured in advance of liability being determined. GHWS met with private providers and established that their mental health offer was similar clinically to that provided by the NHS. Providers (and of course patients) were under no obligation to inform GHWS about use of private services and the split in treatment sometimes made it difficult to follow the treatment pathway of individuals.

GHWS offered treatment for people whose existing mental health problems were worsened by Grenfell, putting trauma therapy time into community mental health teams (CMHTs). However, it also had its own multidisciplinary outreach team. This initially provided urgent community services for those in crisis. It was expected to be a short-term provision but proved invaluable and was retained. It carried out much of the outreach screening and also case management for community members, the latter was the seed for the “Dedicated Service” (DS) for BSRs.

While DS is largely outside the timeframe of this paper it is important to mention. The DS united NHS and RBKC services specifically for BSRs. It was requested by GU. In a less fraught situation that approach might have been considered from the outset because BSRs had particularly complex combinations of social and psychological needs. As it was, the service initially had to run parallel information systems for the two agencies because of user concerns about information sharing.

The therapy parts of the adult GHWS services were developed out of local IAPT (now called NHS Talking Therapy for Depression and Anxiety)⁷⁸ services. We refer to these services as IAPT because that was the term used at the time, and because it makes it clear to non-specialist readers that it is a specific service. IAPT was invaluable, but its processes and procedures needed significant modification in a large, centred disaster. GHWS patients differed markedly on average from IAPT patient populations with a sizeable proportion of high complexity cases who would likely have been referred on to secondary care by a standard IAPT service. Many patients were seen by both the multidisciplinary outreach and therapy parts of GHWS. Across therapy and outreach, up until the end of July 2019 GHWS services saw 2475 individual adults with new patients still being referred in. Amongst those seen for therapy 550 had already attended more than 20 clinical sessions by July 2019 reflecting the complexity of mental health problems, physical and mental comorbidities, intercurrent social problems and the continuing disruptive effect the aftermath of the fire had on everyday lives.

GHWS screened referrals and self-referrals for PTSD and other TSDs. However it also adopted an active case finding⁷⁹ “screen and treat” approach for PTSD, part of NHS guidance,⁴⁴ as have other recent disaster responses in the UK^80,81,36,82 and internationally^83,84,85 Screen and treat for TSDs other than PTSD has been used in other high prevalence contexts.⁸⁶ The overall number of adults offered screening by end of June 2019 was 7297.

Screening must be linked directly to treatment to be effective⁸⁷ screening alone is not effective. Written feedback of screening results was no better than generic advice in encouraging soldiers with probable TSDs to seek help⁸⁸ although soldiers are often reluctant to seek treatment for cultural reasons and concerned it may affect future deployments^89,90,91

Outreach screening was conducted through community meetings held by VSOs, and door to door (D2D) close to the tower where population density was high (e.g. 16400/km² within 500 m of the tower). Proximity and social links meant likely high TSD prevalence. Cases were taken on by outreach staff (who were also doing the outreach screening) and/or referred to therapy if appropriate. Case-finding can be cost-effective where prevalence is high.^92,93,94 A minority of those with PTSD spontaneously seek help.⁹⁵

The plan was to combine active case finding, particularly close to the tower where prevalence was likely to be high, with encouraging referral and self-referrals in more distant areas. The latter proved unexpectedly challenging in practice. Local residents were being bombarded with communications from multiple agencies and much of the material was probably not being read. It was hard to get a message heard and hard to know whether it was getting through. English was not the main language spoken at home for many families⁹⁶ in North Kensington. There were many different linguistic groups. As with Covid⁹⁷ some people trusted news and social media sources based in their country of origin including friends and relatives, rather than accessing local social media or information sources.

GHWS engaged very actively with national and London broadcast and print media to try to get its message heard and inform people about its services and about trauma generally. Local print media are sadly diminished in the UK⁹⁸ thus reducing options. GHWS provided regular information to the media and public including treatment and screening numbers in press releases and in response to specific queries. Partly this was for transparency but, importantly, it was an attempt to normalise seeking help and to inform people where they could get help.

Other approaches to screening were considered. Return rates from postal questionnaires tend to be less than optimal⁹⁹ and it was expected to be particularly problematic in an area with high deprivation and a significant proportion of adults who were not first language English speakers. Telephone screening would have needed a list. Digital screening was explored as an option, but there were few models to base a programme on and there were privacy concerns. One recent study analysed natural language to try to predict PTSD¹⁰⁰ suggesting it may be an area where there is scope for innovative approaches. We suspect a two-way conversation would be optimal in terms of engagement in any digital system which suggests such a system would need careful planning and testing. It is possible that an AI approach might in the future be one, but only one, element in such a system.

Social media might play a part in contacting and engaging with affected people, but it is not straightforward. One difficulty often overlooked is that there are many social media platforms in the world and their relative market share and the time spent on them¹⁰¹ varies with age, social class, gender and a host of other demographic factors and changes over time. A single platform approach would likely not be enough. It was a limitation that, in disseminating information, statutory agencies tended to concentrate on “Twitter” (now “X”) for much of their social media communication. There was some engagement with other platforms but arguably this could have usefully been extended.

Inviting people to come in for screening for other health conditions like cancer fails to engage a sizeable proportion of people; strategies to improve uptake are less effective in minority and hard to reach populations, sometimes yield modest gains and require a well-planned combination of approaches.^102,103,104

A standardised scale is usually used in case finding for mental health problems including PTSD. There are many traumatic stress scales available, in adults at least, each with their merits and drawbacks. GHWS needed a simple quickly completable scale that did not require a high level of English proficiency. It used the Trauma Symptom Questionnaire (TSQ) for adults¹⁰⁵ and the CRIES-8¹⁰⁶ andhttps://www.michaelscheeringa.com/uploads/1/2/0/2/120202234/ycps_2011_feb.pdf Young Children PTSD Screen¹⁰⁷ for children which are simple and widely used. However it is important to note that screening is a systematic attempt to identify people with specific signs or symptoms of a disorder, the term is not synonymous with the use of a questionnaire. PSA screening for prostate cancer does not involve a questionnaire and alcohol risk can be screened for, at a very basic level at least, by asking how many units someone drinks. A standardised set of verbal questions or even a single question can be appropriate for some conditions depending on what one is looking for, but it is important that the reliability and validity of the approach should be known. Screening aims to identify probable cases for further assessment but also to avoid having to carry out lengthy assessments of people who do not need them.

Experience from Grenfell suggested “screening” traumatised populations is conceived too narrowly if the focus is solely on mental health measures. Those affected wanted to talk about a wide range of concerns and wellbeing problems. Screening provided the opportunity for general advice which went beyond mental health to broader wellbeing issues including housing issues, debt, employment, and legal issues. The outreach team were able to signpost people to appropriate agencies.

Screening was a conversation not simply a questionnaire, a systematic extension of outreach work. Embedding screening questionnaires at the end of a conversation when trust had been built was optimal. Early in the screening programme rumours that screening was research rather than care made getting questionnaire data difficult. People wanted help, rather than to be, as they saw it, “guinea pigs”. People were also concerned that results might be misused, perhaps to deny compensation or services. These concerns abated in respect of screening, at least over time, but remained a more general issue.

Subsequently two of the authors (JG and JA) have co-developed multi-agency screen-and-treat programmes for adults and children displaced by war in partnerships with local authorities and VSO partners. “Screening” covered not just mental health but also wider wellbeing including education, family and social problems, accommodation, employment, and general adjustment. As in other programmes¹⁰⁸ non-specialists carried out the screening and intervened with psychoeducation, signposting, referral, and low intensity interventions. Embedding screening into the work of staff and volunteers potentially reduces costs and increases access. Screening is applicable across cultures¹⁰⁹ but it must always be delivered in a culturally appropriate manner.

Some systematic screening was carried out in primary care but early on GPs sometimes struggled to add it on to their already heavy workload. It was hard to integrate different data sources. Putting specialist staff into primary care has been used in screening elsewhere.¹¹⁰ Organising a primary care screening programme is not straightforward. Most large UK health screening programmes, for instance for bowel cancer and aortic aneurysm, are centrally organised even where, like cervical screening, they are delivered mainly via primary care. Detection of PTSD in primary care without screening is limited^111,112,113

Whatever the merits of adult screening, it will not always be appropriate. There is little point in screening if there are no interventions available. If it is conducted in low prevalence populations, it is likely to generate excessive false positives and be more of a hindrance than a help.

Children’s mental health response

In response to a query GHWS reported that 644 children were seen by their services over the period covered by the study. Older children infrequently visit primary care. GPs accounted for less than one in ten child referrals, almost half of referrals came from screening in schools and (to a much lesser extent) local VSOs, with self-referrals, local authority, and referrals from adult outreach screening accounting for the remainder. Children’s primary social links tend to be via schools. GHWS contacted local schools immediately after the fire and offered advice and support to managers and staff. Local authority educational psychologists¹¹⁴ also played an important part in supporting and advising teachers and other professionals.

Referrals for the first eight months went via mainstream Child and Adolescent services (CAMHS). GHWS specialist child services took months to get fully running. A shortage of child therapists with experience in treating external (as opposed to family) trauma was a problem, raising questions about therapist training nationally. For older children and adolescents, PTSD treatments are similar to those for adults. Modification is needed in younger children and a different approach in the very young. Family context is important and other family members may be traumatised. Parental consent is needed for assessment and treatment of younger children¹¹⁵ GHWS took a family-centred approach.

Lack of consistency of approach to mental health between schools was a big problem since each school had to be treated differently. Each school made its own arrangements for counselling and pastoral support. Some schools had their own school counsellors, some contracted third sector or private providers. Provision was fragmented and the trauma expertise of counsellors varied considerably.

PTSD in children is easily missed.¹¹⁶ School based screening has been widely used internationally^117,118,119 Schools often believed that they could not provide contact details direct to the NHS. The degree of engagement with screening was variable, some schools reached out to parents and children and actively supported screening, others distributed letters via the children. How many letters reached parents is unknown. The government in England subsequently brought in measures to prioritise and improve consistency of approach to mental health across schools¹²⁰ and introduced community-based teams to bridge the gap between schools and the NHS. Future responses will, we hope, be easier to conduct.

To maximise use of scarce resources, and to speed access to intervention, GHWS used Teaching https://www.childrenandwar.org/children-and-war-manual Recovery Techniques (TRT)^{121,122,123,124,125} a brief evidence-based CBT group approach one element of its stepped care approach. It can be delivered by trained, supervised non-therapists. It is not a replacement for expert therapies but can be provided quickly at scale, reduces trauma symptoms, can be sufficiently effective in some children so that they do not require referral for more complex therapy and is positively received by children and parents.

Suicide

Soon after the fire, rumours of twenty suicides circulated in the community and in the media.

Neither GHWS nor journalists could substantiate these. An independent report commissioned by CNWL¹²⁶ from Professor Louis Appleby concluded that “suicide rates have not risen as a result of the Grenfell fire” but that “in a small number of cases the fire may have been a contributory factor in an individual suicide”. Boroughs are required to have clear and up to date cross-agency suicide plans, as RBKC had, and they need to publicise these arrangements after a disaster to reassure the public.

The role of community, public and voluntary sector organisations in grenfell

We did not set out to measure the activity and impact of VSOs in the Grenfell response. The scale was unfeasible, and many organisations funded by RBKC had been reluctant to report activity or sometimes even admit having received council funding. Small VSOs often, although not always, keep minimal records. Few international accounts of disaster responses go beyond the anecdotal in their descriptions of community level VSO involvement. That is a huge gap in our understanding. The contribution of local and national VSOs to public wellbeing is vital,¹²⁷ Some UK national VSOs like BRC are emergency first responders. We think the contribution of VSOs to health and wellbeing generally, and to disasters in particular, merits further systematic research.

“Community” is a vague term that can mean many different things; people in a geographical area (“local community”), shared interests (“bird watching community”), characteristics (“deaf community”), ethnicity (“black community”), beliefs, shared skills, even not in hospital (“care in the community”). Some usages assume social connections, others do not. Depending on definition, people who are part of a “community” may not know each other, come in contact with each other, live in the same area, share culture, views or opinions, or agree what should be done after a disaster. Most people are likely to be part of several communities and one local community will have many different communities within it. There is a tendency for those writing about communities to unconsciously blur elements of one definition into another.

In this paper we use “community” simply to mean people living in North Kensington. “Public” means anyone acting outside statutory services. Voluntary Sector Organisation (VSO) means charities and other legally incorporated organisations, but also unincorporated organisations like tenant organisations, sports and arts clubs and social clubs. The latter are frequently overlooked.

VSOs are involved in local and national disaster (and service) planning in the UK. Specialist VSOs tend to be the first port of call for statutory organisations and NHS commissioners wanting public representation on specific topics. That is entirely understandable but it can lead to a circularity in which people interested in depression end up talking solely to other people interested in depression. A little thought shows that is a seriously limited view if your objective is to promote public health objectives and to build partnerships with maximal reach. If you want to increase diabetes detection and prevention in local communities you need to look more widely than just specialist diabetes VSOs alone, invaluable though they are. Other VSOs are likely to be engaged with people who do not yet know they have diabetes.¹²⁸ and may well have members who would be willing to get involved in any initiative. Similarly, if you want to help a community with high rates of mental health problems you need to engage more widely than simply specialist mental health VSOs.

Here are some of the many ways in which the public and community were active in the early days of the response:

There is a need to incorporate managing a large influx of volunteers into emergency plans. People want to find a way to help. Excessive attempts to control individual generosity would be inappropriate. However, an unmanaged influx of volunteers can become overwhelming. RBKC failed to take control early on, partly because it lacked the moral authority to exert effective control beyond statutory safeguarding requirements.

In the post-emergency phase VSOs had many roles:

Cornish, Long and Belson have developed an invaluable Grenfell Community-Public Timeline.¹⁴¹ It vividly illustrates the sheer diversity of activities and initiatives. A significant element involved the wider public, particularly for fundraising. Most VSO activity was aimed at wellbeing rather than mental health. Most of the health activities were complementary therapies. Arts in their broadest sense are very prominent, including as a mode of fundraising. The volume of new activities, not surprisingly, reduced over time.

There was joint working between the NHS and VSOs which went beyond that expected in the local and national models. NHS mental health services worked with the BRC and community volunteers, going out into hotels and the local area and visiting people in their homes. The NHS received many requests for training and meeting support from local VSOs which it met wherever possible.

For the NHS, having pre-existing cross-sector networks in place before the fire, and a tradition of co-operation and good relations with a large number of organisations and individuals was crucial to the Grenfell response.

Timeline

As noted in the methods section, disaster responses need to be understood as narratives as well as cross-sectionally. The main elements in the timeline are described and discussed in the text above, but the timeline shows how these things were linked together temporally.

Limitations

A case study of a single disaster will inevitably have limitations. Disasters are highly variable and the nature of the disaster, the population affected, social and political situation and availability of resources vary hugely. Grenfell is a centred event. The dynamics of a dispersed disaster are different, even though there are some common issues. In a dispersed disaster those affected are scattered geographically, usually socially unconnected before the disaster, and demands on any single local service likely to be lower. We have attempted to separate general themes from issues specific to Grenfell, but we cannot be certain that we have wholly succeeded.

The division between emergency and recovery phases of a disaster is an arbitrary point on a complex evolving picture with different parts of the system at different points at any one time.

This project is a study of planning for and responding to disasters. It is not, and was not intended to be, a study of the outcomes of particular interventions for specific psychiatric conditions, important though such studies are. There is a great deal of information available on the outcomes of specific interventions for TSDs, including after disasters^178,179,180 but much less on the structures and systems needed to deliver those interventions and about the provision of wider wellbeing services in large scale centred disasters.

Some potential informants refused to be interviewed, sometimes on advice from lawyers, because they might be called to give evidence at the public inquiry, or even be prosecuted. Some were concerned that they might be accidentally identified and subject to harassment on social media. Some professionals and volunteers found the whole experience so painful they did not wish to go over what happened. We do not believe that has had a major impact on our findings, but it is a limitation.

Recommendations for further research

Key recommendations are:

Many of the issues identified below have implications for everyday clinical practice in an era when demand outstrips supply worldwide for mental health services. There is a need for: