Isolation of the sector
A sense of isolation was reported to take different forms. First, the sector felt cut off from the NHS and pre-pandemic sources of service and support, especially at the onset of the pandemic. The panic and pain perceived by informants were palpable. Expert stakeholders felt that lack of parity and esteem was the root cause of lack of understanding of the specific context of CHs and how they operate and resulted in government guidance that is not adequate or sensitive to the nature of the sector:
‘It’s taken an enormous amount of effort to convince the people that are producing the guidance that (a) they need to understand what happens in a social care environment and (b) what is actually needed and useful for people to implement on a daily basis when things are changing quite rapidly … you know, until we get this parity, we’re going to keep having these problems, whatever type of outbreaks of diseases that we’re getting’.
Second, national policy frameworks that were put in place meant the sector was very much off the health radar at the beginning of the pandemic and regarded as disenfranchised from primary care to a large extent:
‘The emptying of hospitals to protect the NHS, the NHS was framed very much in terms of hospital beds, intensive care capacity, and therefore even further distancing the care home sector and the residents in particular from health-care responses.’
‘In terms of isolation, I think our care homes were incredibly isolated certainly in the first wave, it was all about care homes just taking what the NHS was sending to them from hospitals with actually really poor communication’.
These consequences were reportedly compounded by pre-pandemic effects in which routine health care into CHs of the quality, depth and breadth required were not being met. People were exposed to further disengagement from the statutory structures supposed to support them. This added to the barriers and obstacles created by social distancing and the lockdown. Disengagement of many parts of the system – physically, socially and organisationally – from the direct healthcare delivery seemed to create a multiplier effect:
‘There is something really, really, really important in policy-making, which is to stop thinking about the NHS and then social care and start thinking about social care and the difference it makes to people’s lives every day’.
Third, the standalone nature of CHs meant CH managers felt isolated from each other and were put in a position where they had to struggle with things they had never had to do before, at least, not on the scale the pandemic required:
‘It was the isolation part I think we found the most challenging and the most difficult. We had an outbreak here for a small service, we’re 17 bed older person’s service in [Area name] here, we had our outbreak in early January and it did, it caused lots of challenges with the whole isolating of our folk and the secondary kind of things that that caused, of the loneliness and all the low moods. It really was very difficult time for us and, you know, for future kind of toolboxes on what we can do to kind of improve on that would be very beneficial, yes’.
There was also the sense that the isolation of CHs from the rest of the system continued for many providers and residents. It was reported that a lack of parity of esteem and isolation also impacted the lens through which policy was formulated and communicated. This was particularly the case with the design of infection control policy, which was made for the NHS, not social care. Participants said that when CHs most needed infection protection and control support, this support was not available: infection control nurses did not visit, everything was remote and registered managers lacked that experience:
‘… we were asking staff to do rapid testing of people coming in, and actually … you were asking nurses to do testing across the whole of the staff groups and residents, that really hadn’t got that experience in infection control element of it, but were then putting themselves and their own well-being at risk’.
Where the NHS had teams managing IPC, the sense was that social care was left to ‘get on with it’:
‘I’d see overstressed nurses doing the testing and having to fill out the IT systems … then go and do their medicines, go and do their dressings … because providers had not put people in … putting their own well-being at risk … emergency planning and incident management in the NHS was planned but we don’t seem to have a plan for social care’.
‘But resources weren’t put in as well, so actually what you’d find is like in the NHS you’d have teams that were doing testing, so actually you had designated people to do that, in the care homes because obviously I understand financial costs, but actually they didn’t put any further resources in’.
Though the pandemic was a significant event across the UK, there seemed to be no emergency plan for CHs to follow. Responsibility for this was seen as resting with LAs, who needed to contribute and provide for such plans, since care providers themselves did not have such resources. Staff absences compounded such difficulties at CHs and fears that they did not have the necessary expertise:
‘And I do question, you know, sometimes with swabbing, and I did see some people doing swabbing, and I looked and thought, “well that’s not been done correctly”, but you can’t blame those people because really they’d not had that level of experience or expertise within their roles is what they should be undertaking … they were being asked to do things really out of their accountability’.
This sense of struggle was magnified by problems with ‘Test and Trace’ and limited PPE supply. However, some CH managers tried to support each other, especially when some homes had shortages of PPE supplies:
‘Care home managers started supporting care home managers. If need be they were sharing PPE just to get through the weekends and things like that’.
Government guidance
The second central theme identified by focus group participants was government guidance for CHs and the communication processes. ‘Chaos’ was the word used to describe the method of cascading information to CHs, especially in the first wave of the pandemic:
‘An announcement was made, but then there was no guidance to back it up – people were regularly asked about what happens next and then there was an assumption that we knew what was happening before it was announced. So, we’d be able to answer questions, and of course the reality was, stuff was announced, and then there’d be a time lag before the guidance arrived, quite often on the Friday before the rule change happened, you know, was brought into force on a Monday’.
The way the guidance was communicated, including sometimes very lengthy documents, was challenging to assimilate. The terms in which the guidance was couched also revealed a lack of understanding of the social care context. Furthermore, there was little time for teams to absorb and summarise the various guidance documents (from government and other organisations) and to translate often very complex guidance, which took no account of the reading ability of staff and assumed a high level of training and understanding across all care settings:
‘… we had care home support people in the CCG, NHS England, but actually some of them had never worked in social care, so actually that they were trying to deliver the social care, they were trying to deliver policies and procedures into environments that they’d never worked, or they didn’t truly understand. And I think that became quite frustrating as well, that CCGs had a care home lead, but that care home lead had never really worked in a nursing home or a care home, and actually that’s the most frustrating aspect’.
‘… so you had a real comprehension gap, capability gap, as well as capacity gap often in understanding how health-care-based infection control measures could apply in social care settings’.
Expert participants felt that having a social care association or organisation supporting CHs in the interpretation and simplifying of government guidance to be helpful; however, when different groups presented summaries, this could have added to the burden of information and became unhelpful:
‘Actually, a number of sources coming up with information packs, we had stuff from Health Service, we had stuff from ADASS colleagues, you know, all coming up with different versions of actually the same sorts of things that we needed to talk to care homes about and I found that really unhelpful as well, sort of thing, so just to reflect on that’.
These processes and the pandemic also put a considerable strain and onus on the CH manager, regarded as ‘probably the most beleaguered role in the sector’:
‘… everything tasked to them, they get every phone call in the home where they’re expected to deliver everything. And sometimes that then dilutes it down because the manager is so overwhelmed with the information that’s coming in. And actually we should simplify it, because during the pandemic there’s no resources, there’s no staff, you’ve got families that are all kicking off, you’ve got residents that are extremely frightened as well as the staff, and then you’re having to sit down and read a 56-page document on about how COVID’s meant to be managed, you just haven’t got time for that, you know’.
The speed of changing guidance and timing of releasing new guidelines came with expectations that managers were ready to digest, summarise, disseminate and implement in almost no time:
‘… it would be really helpful if DHSC didn’t release guidance 4 o’clock on a Friday when the manager’s about to go home and expect it to be implemented by the Saturday because relatives know that’s happened and they want to come in and do whatever that guidance says they’re now able to do, so that obviously, again, there was that difficulty with residents and families around the speed in which some of those could be implemented’.
‘But the plethora of guidance coming out from everybody, and picking up the point that somebody made about our wonderful care staff but actually our wonderful care staff are very good practically but, and somebody quoted to me a week or so ago that the average reading age of a care worker is probably around about 12, therefore the guidance that the government, that the department’s produced, that’s very, very complex is broadly really, really difficult for them to read and interpret and also to read and interpret at speed’.
The complexity of interpreting guidance was compounded by the roller coaster of different waves of infection, layouts and designs of CHs. A keynote of the pandemic response was described as an evolving scientific understanding but one that stretched the limits of applying that to a highly diverse care sector. Alongside guidance sat demands for data from statutory bodies, some elements of which were unclear to staff, and some felt could be quite disempowering. CH staff were asked questions that led them to question their ability to look after residents. They also often fell back on their resources when being asked to confirm cases when doctors were not entering the home, especially in the early days of the pandemic.
Visiting
Participants spoke of how visiting regulations evolved throughout the different pandemic waves and led to variations in interpreting and implementing visiting guidance. Visiting methods varied, including the use of window visits in the early wave of the pandemic, which were not without problems:
‘…. one very basic was window visits, because actually people were looking at window visits like it was a zoo, and what was the support for residents? So as we moved from the first wave of pandemic to the present, providers suddenly started to invest in pods, so more of a professional aspect of visiting. And I think there was a lot of distress caused by window visits, one for residents, especially those with mental health or learning difficulties, those that couldn’t understand that process of why, you know, their relatives, their loved ones were staring at them through windows, could that have been adapted better? Why did we wait so long to put isolation pods in?’
While technology (mainly digital technology) did help when visiting restrictions were in place, it also accentuated the digital divide between homes. As our CH staff participants also described in Chapter 5, focus group participants suggested that technology imposed an even greater workload on hard-pressed staff. There was also little time for training and staff development in digital technology. Virtual visits were implemented for clinical staff, who usually visited CHs, and this reinforced the sense of isolation and even abandonment in some cases. The implications of visiting restrictions on residents were viewed to be considerable and to act in different dimensions from practical arrangements and effect on the well-being of residents to human rights and legal issues:
‘So staff need support and training on the legal duties that they have and how they relate to visiting in terms of the Mental Capacity Act, the Equality Act, the Human Rights Act, and throw away references to those bits of law in government guidance is not going to help when staff aren’t trained in their duties in those bits of law and how to use them on the ground’.
Trauma
As the pandemic wore on and the different waves and variants emerged, there was a need to take greater account of the broader health and well-being needs of residents, their families, visitors and the CH workforce. Participants felt that it was slowly, increasingly being recognised that the workforce was traumatised. Hence, a trauma-informed approach was beginning to inform system leaders’ thinking about staff well-being. However, it remained unclear what that means in the CH sector. Equally, there was some concern shared that the awareness of trauma may have provoked an overreaction in balancing risk and rights of residents to the degree that some CHs adopted a more draconian set of measures and a closed culture:
‘Wave one had very limited mitigations, really public health 101, that Florence Nightingale would have recognised, wave two became more about the ability of testing and more sophisticated approaches to IPC and kit and equipment to enable that, and then wave three has become about the impact vaccinations have had on mitigating the impact of the wave. But also each was punctuated by emerging viral variants, so wave one was the wild type, wave two became the Alpha variant, which … swamped some of the defences that we’d already built, and then wave three has mainly been about the Delta variant, which again brought up more challenges. So again, while the scientific sort of issues behind that can be understood, what people in the frontline and these settings are experiencing is that just increasing degrees of concern that whatever defences we put in place this virus seems to be able to sidestep them and cause harm. Now thankfully the vaccine defence has proven to be the most resilient and touch wood continues to be so, but there is still the ever-present danger of variants emerging with vaccine escape potential. So it’s this balance of trying to be very clear about the risks we face, and communicate that effectively, without disempowering or traumatising people again who’ve been through an awful lot, and trying to give a high degree of confidence where we can in the measures we have in place and what they can do’.
Focus group participants spoke of trauma as impacting at several levels. Staff trauma derived from the experience of delivering care and the losses they had suffered due to people in their care dying. Residents were impacted by both the experiences of loss and grief, social isolation from their families and fear they might succumb to infection. Family members had not been able to have their pre-pandemic normal relationships with their loved ones in care settings and feared that their interaction might be a source of harm to the people they love. Families were also reported to be hesitant about re-engaging in a way that they would otherwise have done:
‘So we’ve had lots of stories about – despite policy enabling visiting – care homes being hesitant about enacting it, because of these sort of concerns about infection coming into the care home’.
Expert participants felt that the trauma caused by the pandemic on the CH sector needed to be acknowledged in the relationship between health and care within an integrated system:
‘You know, 30 years of care I don’t think I’ve kind of experienced anything quite so traumatic as kind of what we experienced ourselves in the small home here’.
‘I mean that’s just traumatic and I think actually from a commissioning and in integration perspective to just see the lack of esteem from our NHS hospitals to our care homes was really badly managed and I think in any environment where care homes are part of a solution to managing vulnerable people there needs to be parity of esteem, we need our NHS hospitals to understand that the care homes do an extraordinary job and if we want to support an integrated system’.
Legacy of learning
One of the major themes from the focus groups was a feeling that trust needed to be rebuilt at different levels of the system:
‘… there had been a huge amount of trust lost within care homes, so care providers don’t trust government, they don’t trust the system because they thought something would support them, if something really bad happened, and it didn’t’.
Trust had also been lost between CHs and the NHS:
‘… we have heard awful stories of care homes reaching out to the NHS and literally nothing happening, and no ambulances would come and all of those kind of things. And now we’re surprised that there’s a bit of lack of trust around vaccines, it’s just, you know, it’s following through the emotions as to where some of that might come from, so I think there’s a huge amount of emotional work that needs to be done to rebuild some of those relationships’.
Voice and expertise of the sector were also important:
‘I think the voice of social care needed to be higher on the agenda for national guidelines. Specifically, it was mentioned that the SAGE subgroup should have representation from staff, lived experience, managers, etc.’.
Key learning points from guidance included simplicity, the brevity of expression and readability targeted to the audience for which it was intended. It was also emphasised that those crafting guidance should have lived experience and expertise in the CH sector. Further lessons were also identified related to the benefits of bringing experts together across LAs to collate expertise, support each other and inform official positions:
‘… what went well is that the care home forums developed a lot stronger links, so they actually came together, so they were registered manager-led, they weren’t local authority or CCG-led, they were led by a registered manager, there were different providers … working together as one to support each other’s services through the pandemic, so that worked really well in some of the … [Local Authorities]’.
While there was the perception that some relationships broke down, others were seen as being strengthened (e.g. links between hospices and CHs). Engaging the sector in the development, financing and deployment of policy-making was another significant point. There seemed to be an openness to recognising the value of taking on board the needs of the end-users of any guidance or policy decisions and how to gain feedback on what was working or not. Not only that, but in terms of evidence implementation, it was acknowledged that in a rapidly changing virological landscape, some trade-offs and pragmatism might be required:
‘… it’s also important to recognise that even with the best efforts of some of the best scientific minds in the country on the SAGE groups, there are just evidence gaps in this space that aren’t filled yet, and therefore people have had to make judgements based on what evidence was available to them. And what that then requires is for people to cooperate together to try to evaluate whether the interventions have had the desired outcome or not’.
Furthermore, the implications of some of these decisions, such as the condition of receiving the vaccine to continue working, was felt not to match the reality of the CHs’ workforce conditions:
‘I’ve just done a survey with my members and a good 40–50% of them think they’re going to have to sack some staff because they won’t take the vaccine. Now that doesn’t seem right at a time when we’re going into winter pressures and when we’ve had 18 months of a really difficult working environment’.
The main driver for learning and future development remained on protecting older people and keeping them safe during and post the pandemic:
‘So we’re looking at a whole range of things that perhaps we might not have done but that we’ll continue to use going forward. At the end of the day I think the overriding factor was to keep people safe, to try and keep people informed, and for me how well that worked depended not just on the care home and who ran it and the knowledge of the staff, but also the cohort of residents in it’.
Innovations
Participants discussed how digital technologies are now being used more widely. There was greater understanding and engagement among CHs; people learnt how to use these technologies and exploit them to circumvent the impacts of social distancing. The view was that this had been a significant bonus and had opened a whole new way of sharing and exchanging information and supporting people in ways that might enable and facilitate their recovery. For instance, CHs now implement activities remotely, through digital technology, such as yoga, music, arts and culture interventions, which they previously only ever conceived as being delivered face to face etc. Together these were seen as opening a whole new universe of possibilities for CH residents:
‘… people have been really very creative during the pandemic, in ways that I don’t think would have happened otherwise, and it has certainly expedited and accelerated the implementation of all of that technological wizardry that was being used for other things, so repurposing existing stuff and bringing it into the care home sector has been a real, real benefit’.
The vaccine programme had been prioritised for CH residents. It targeted the most vulnerable group and managing that with distancing requirements was seen as an enormous step forward for the CH sector. Participants felt that closing down CHs was not new regarding visiting and access. The example of norovirus was used to illustrate workable policies and solutions to circumvent and provide safety for residents, visitors and staff. So, there are proven ways of working that can maintain some degree of safety and protection in the face of a highly destructive virus, which can hopefully be embedded for the future (with a keen eye on the potential negative impacts of getting it wrong). The sense was that a lot had been learnt about getting policy right when we need to lockdown a CH, albeit temporarily. The point was also made that there was a legacy of skills’ acquisition and a strengthening of clinical skills by staff in particular:
‘… it’s allowed them to actually probably go from a mediocre service to a higher service because all of a sudden they’ve been tested and they’ve possibly enjoyed that testing, I know, probably the wrong words to use, but actually they’ve had to up their game’.
Place
The effects observed were felt to vary according to place and locality, where existing solid networks and established relationships with the LA, community health services and healthcare professionals were felt to facilitate better outcomes for all involved. The support received from the LAs and CCGs were appreciated, but this was again deemed to vary from one area to another. Some CHs felt they were supported by the LA to form ‘subcommunities’ among CHs; this reduced the sense of isolation, improved the ease of interpreting guidance and impacted residents’ outcomes. However, these relations were diverse across different places and were subject to pre-pandemic established networks:
‘Some local authorities said you can form a subfamily unit within your care home, another local authority says you definitely can’t, so there wasn’t an opportunity for them to have a dining experience together or an afternoon together or to sit outside when the weather was well, socially distanced, so we had to be very creative over what we felt based on the infection control guidance was suitable’.
Such local networks extended to the relationships with different healthcare professional groups. Well-established working relationships pre-pandemic were felt to facilitate creative thinking and innovations in the delivery of care:
‘As a [Local Authority] we’re really, really fortunate and I’d recommend it to anybody, we have an OT team that works specifically with people with dementia in our care homes and extra care schemes. They have them allocated to each, they have two settings each, they design training, they knew the residents that had the difficulties and they were able to work with the staff to try and come up with some interventions to support the residents’.
On the other hand, where local networks were not strong before the pandemic, this was felt to affect residents’ outcomes adversely and significantly, especially for those with complex needs or specific communication difficulties:
‘The access to health services with other professionals backing away from care including social workers, CQC inspectors, GPs, district nurses, other health professionals, and care staff having to fill the gaps left by them, lack of access to hospital in the beginning whether you had COVID or something else, and that’s still ongoing, still lots of health care is being delivered virtually or from a distance, which as people have said virtual communication just simply doesn’t work with some people, particularly older people that we support, if you’ve got dementia or another condition communication difficulties and, you know, speaking to a GP on an iPad is going to be more distressing than anything else.’
Impact on staff
The pandemic and associated infection control measures, including social distancing and isolation, significantly impacted CH staff. Expert participants felt these affected staff retention, workload and well-being at work and beyond. CH managers were very conscious of these effects, and many tried to implement different supporting mechanisms for staff. However, such support varied across CHs and was very much dependent on the capacity of the CH managers. Here, care associations and national groups were able to provide some external support for staff:
‘We should not forget the staff who are working there who were frightened at the time, that they’re not necessarily the most educated, they’re certainly not well paid in terms of all the work that they do, and we can’t forget about the impact on them. For those care homes that didn’t have support for care home staff, we gained access to them to our employee assistance programmes and we also gained access via the [name] Foundation Trust and our CMHT access if they wanted it for psychological and support’.
The impact on staff was recognised within a pre-pandemic shortage and workforce challenges, making the situation much more difficult. CH staff found themselves in intense working conditions and increased workload associated with more pandemic-related tasks and more staff taking sick leave due to contracting COVID themselves. These stressful working conditions impacted the ability of staff to innovate or come up with much needed new ways of organising and delivering care during the pandemic:
‘I think what COVID did was laid bare the difficulties that were there already, so when we see certain settings perhaps not being innovative, perhaps not thinking about ways round things, if you think that pre-pandemic the sector was running with a roughly 10% fewer staff than it needs to function, we then have a pandemic, we then have staff off, we then have staff isolating and they’re just about managing to keep everything afloat and there wasn’t time for innovation for a lot of those care homes, they were just glad if there was enough people on the floor each day and that’s about as much as they could cope with’.
