Following the publication of the BMC Geriatrics multi-method qualitative study into registered care home managers’ experiences of responding to the national care home visiting guidance in England during the Covid-19 pandemic, Care England has prepared a read-across providing a view into what the experience was like through the lens of learning disability providers.
Through a series of qualitative interviews, Care England found learning disability providers were left without guidance for extended periods of time, guidance from government and stakeholders was variable and uncoordinated, and information was duplicative and overwhelming, amongst numerous other challenges.
How do findings apply in the context of care providers providing care to younger adults with learning disabilities and autistic people?
This exercise followed the publication on 19 April entitled “Registered care home managers’ experiences of responding to the national care home visiting guidance in England during the Covid-19 pandemic; a multi-method qualitative study.” The study examined how care home managers experienced, understood and responded to the national care home visiting guidance in England in developing their visiting policies. This exercise was intended to better understand whether and how the findings of the study applied to care providers providing care to younger adults with learning disabilities and autistic people.
Methods and methodology
Care England held a discussion with its Learning Disabilities Group, following the publication of the study, to garner feedback to inform this exercise. Care England’s Learning Disabilities Group brings together individuals working with those with learning disabilities and autistic people. The Group meets virtually monthly via Microsoft Teams, creating a collaborative forum to share good practice, provider concerns, and sector-specific updates. Members of the group receive ad-hoc briefings on particular issues, relevant reports, and ongoing consultations. The group is comprised of a variety of circa 30 individuals from care home managers to Chief Executives of national providers. Care England also conducted two in-depth, virtual interviews. One provider specialises in providing supported living settings, whilst the other provides both residential and supported living services. These in-depth interviews were conducted to ascertain more bespoke feedback in relation to each of the eight key findings. Care England used the eight key findings from the study as the topic guide.
Government guidance; issued late and not user-friendly
There was a consensus that the findings of the study applied to the learning disability sector. Respondents referred to the logistical/operational challenges of guidance often being announced on a Friday afternoon, and problems with communicating changes to a large cohort of staff, service users and families with appropriate adjustments.
Specific to the learning disability sector, easy-read versions of guidance designed for people with learning disabilities and processing issues often would not come until after general guidance was published and operational changes had already been implemented. There was also the concern that easy-read versions were also not always of high quality. This meant providers had to internally resource the comprehension and explanation of oftentimes confusing and overwhelming changes that happened frequently throughout the pandemic. To combat this some providers had to make their own easy-read versions of guidance. This was a lengthy process, as easy-read can differ based on the processing ability and needs of a person: what easy-read looks like for an autistic person could be different than for someone with an acquired brain injury.
Furthermore, there was evidence of providers having to rewrite guidance as a result of its predominant focus on older people living in residential care homes. For example, the Government issued guidance to prevent social care staff from being deployed across multiple settings to prevent the spread of COVID-19. Whilst this was effective in large congregate settings, for multiple Supported Living settings, this posed significant problems. If someone living in their own home only received a few hours of care a week, the staff member providing care was unable to attend any other services, and providers had to pay staff a full-time wage despite minimal contact hours, exacerbating pre-existing workforce and financial pressures. Due to complexities regarding how care is commissioned separately, organsiations that provided care in Supported Living settings through the pandemic had a unique challenge relating to restrictions on visiting. For example, someone in a supported living setting, oftentimes, has their own tenancy agreement separate from the care they receive. As such it is not the case that providers could issue their own visiting guidance in the way a care home may have been able to.
It also took 6 months following the introduction of COVID-19 restrictions in March 2020 to produce supported living-specific guidance for matters such as infection, prevention and control (published September 2020), while the parallel guidance for care homes on how to protect care home residents and staff during a coronavirus outbreak was published on 2 April 2020.
Managers commonly learnt about frequent updates to the guidance through televised Government announcements, often on Friday with written guidance not available until days later
There was a consensus that the findings of the study applied to the learning disability sector. Oftentimes, the televised announcements were generic to the wider population (announcing nationwide lockdowns, etc), and when they did explicitly mention social care, Government officials failed to go into detail surrounding the nuances of different parts of the sector.
As noted in the report, written updates were frequently not available until days later, and were published via the GOV.UK website, which providers noted was difficult to navigate, and had to frequently monitor to ensure updates were not missed. Accordingly, some providers would hear about regional or sector-specific issues such as visiting and IPC guidance through informal groups before discovering it on official Government channels.
Beyond the study’s findings, providers noted a camaraderie between learning disability providers, who would work together trying to clarify guidance, specifically in how it applied to supported living settings. In supported living settings, people have their own tenancies, meaning people could refuse care in their own homes. This naturally led to challenges across supported living settings, where care providers had to balance their duty of care to their service users and their staff, ensuring everyone was properly protected.
The Government guidance, and subsequent updates, were widely considered ‘open to interpretation’
This finding of the study was in part agreed upon by learning disability providers. The primary concern for learning disability providers was that Government guidance typically focused on older person nursing and residential homes, and failed to take into account the nuances between older person services and services for adults with learning disabilities and autistic people. Furthermore, government guidance also neglected to consider the large proportion of the adult social care workforce who were clinically vulnerable. This led to difficulties for both older person and learning disability providers, as they had to implement ever-changing guidance, while also marrying it with the safety needs of their workforce, and ensuring service users were still receiving high-quality, person-centred care despite the circumstances.
Respondents believed that throughout the pandemic was a lack of central understanding of the diversity of the adult social care sector. Particularly, respondents thought the concerns articulated by those who support individuals with a learning disability and/or autism were largely overlooked. This led to a predominant focus on older people’s care in the guidance which did not appropriately reflect the needs of adults with a learning disability and autistic people. For example, some people in residential homes for adults with learning disabilities and autism have full-time jobs that they were unable to attend due to the blanket ban on people going in and out of care homes during the pandemic.
Guidance and advice from local regulators and stakeholders, variable and uncoordinated
This finding was agreed upon by learning disability providers. In particular, reference was made to the varying interpretations regionally, and between NHS England, IPC teams and DHSC.
Contrary to the study, which suggests that Local Authorities oftentimes provided “some of the most comprehensive and responsive support,” some learning disability providers found that it was often support designed through the lens of supporting older person care services, and as such was not as applicable or appropriate for those in learning disability settings.
Conversely, other providers reported experiencing virtually no contact with their local authority and the central regulator, which is in line with the report’s findings. The effect of this was a breakdown in relationships between providers and other sector stakeholders. Providers were determined to ensure the lack of support would not affect the people they support, maintaining safe and effective care throughout. However, this required vast amounts of work, to the detriment of staff wellbeing, leading to burnout, and exacerbating workforce shortages across the sector.
The lack of coordination from the regulator also varied across the learning disability sector; while there were reports of inspectors calling registered managers to ask how they were coping, these appear to be largely isolated incidents. Other providers, in line with findings in the published journal paper, were perpetually concerned about the prospect of an unannounced inspection amid the pandemic, which added additional pressures to those in managerial roles.
Wider information, advice and support; valuable but duplicative, overwhelming and confusing
This finding was agreed upon by learning disability care providers. Learning disability care providers mentioned they were largely trying to help one another by sharing information they received, but this led to an overwhelming amount of sometimes conflicting information. Providers noted they had to set up their own COVID-19 email addresses to ensure their regular emails were not bombarded with COVID-19 updates and that these updates could be effectively filtered to managers across services.
Restrictive interpretations, and lack of discussion about wider risks and harms and human rights- insufficient recognition of dementia, end of life and other specific needs
This finding was agreed upon by providers. The overarching theme throughout the pandemic, in the view of respondents, was that the learning disability sector was treated as the “poor sibling” to the older person sector. People with a learning disability and autistic people often, similarly to older care home residents, have complex and comorbid health conditions but were still not thought of for a significant period of time. There is stark evidence of this, for example, not being included in the first round of vaccinations which was thought emblematic of their treatment throughout the pandemic.
At the same time, decisions made should have taken into account that, unlike older care home residents, not all of those in receipt of care within the learning disability sector were clinically vulnerable and this should have been taken into consideration when assessing the impact of the restrictions on liberty and independence.
Furthermore, within what is widely regarded as the ‘learning disability and autism’ sector, there are also levels of nuance. For example, services that provide care to the aforementioned people often also have provisions for people with acquired brain injuries or mental ill-health. Oftentimes, there is also overlap between learning disabilities and/ or autism and mental ill-health, as well as compounding comorbidities. Yet, as discussed above, this variation simply was not captured in the guidance due, in the view of respondents, to the lack of sector understanding by the people writing and producing guidance during the pandemic.
The importance of care home leadership and staffing
Care providers agreed with the finding, noting that understaffing remained a huge issue which was exacerbated by burnout, but that people worked together in a way that had not been seen before.
Report suggestion that sector may have been less afflicted if longstanding calls for investment and strategic reform had been heeded
This finding was agreed upon by the providers who noted that the foundations of a sustainable sector were not secure prior to the pandemic. Learning disability charity Hft publishes a yearly Sector Pulse Check report into the financial pressures facing learning disability providers. Their report covering 2019 highlighted immense pressures already fracturing the foundations of the sector, even before the pandemic. The report cites that one in five providers had been forced to cut support as a direct result of financial strain, with 43% of providers surveyed warning they had witnessed a reduction in the quality of care they were able to provide due to funding cuts.
As a result, respondents believed that it did not take much to push the sector over a precipice when COVID-19 began to exacerbate pre-existing and systematic pressures.
As per the conclusions of the published paper, respondents thought that the Government must take the sector seriously in order to future-proof it, and that requires significant investment in, for example, workforce development to aid recruitment and retention, successful integration to ensure joined-up care can be provided and effective communication lines can be established, and long-term prevention to ease systematic pressures. Beyond additional financial investment, the Government must also help bring parity between the NHS and social care. By the end of the pandemic, the country was applauding the vital work of carers, but respondents were concerned that, post-pandemic, this momentum of recognition could be lost.
Going forwards, the understanding of the social care sector amongst Government bodies needs to fully take account of the nuances of the sector, including fundamental differences between older person care homes and services for people with learning disabilities and autistic people to ensure that in future we do not lack specialist guidance or planning. This can be helped simply by ensuring actors from across the adult social care sector are engaged with dynamically in the development of policy and guidance, and that older person and learning disability services are seen as different parts of the same integrated system.
We found that the findings of the “Registered care home managers’ experiences of responding to the national care home visiting guidance in England during the Covid-19 pandemic; a multi-method qualitative study” resonate strongly with providers of services to individuals with learning disabilities and autistic people. Yet, there remain specific issues, experienced by this cohort of providers, which were not felt by the older person sector, notably owing to the predominant focus of the Government on the older person sector throughout their response to the COVID-19 pandemic.