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Care Campaign for the Vulnerable submission - Care Homes Public Inquiry

Care Campaign for the Vulnerable Origins

As the former daughter of a loved one with dementia, our Founder and Director had placed her trust and confidence in a care home that ultimately failed to deliver what she had thought to be an even basic level of acceptable care. Indeed, concerns were such that she had resorted to placing a covert camera in her mother’s room, purely to reassure herself that her mother's best interests were central to the care she received from staff employed at the care home.Regrettably, recorded images confirmed her worst fears. Whilst subsequently trying to resolve those obvious shortcomings with the Company representatives, her mother was served with a 28 days notice to leave the home. As a result, concerns and those of other relatives were never fully addressed and she tells of never actually getting to know if the welfare of the other residents improved because of the issues she and others had raised.

The entire debacle however made her wonder if these experience and that of her mum was the exception rather than the rule. The very sad thing was knowing that many vulnerable people with dementia living in any home, are simply not able to let anyone know if they are distressed, mistreated, neglected, disrespected or simply ignored. Whilst having since heard from hundreds of other families who are very concerned about the care their loved one receives in care home settings, there are also very many residents with few or no family members and no visiting advocates who can speak up and raise concerns on their behalf.

It was for all those reasons, Jayne started to raise awareness for the introduction of safety monitoring systems (CCTV) in dementia care environments. Care Campaign for the Vulnerable (CCFTV) was the brand developed to essentially communicate our purpose to all possible stakeholders and to unambiguously represent those vulnerable people living in the long term care sector.For members to reflect on the issues that will undoubtedly surface as a result of this enquiry, it is important that they all understand the structure of the elderly care sector.

The following information provides some detail regarding the UK health and social care market, the process of inspection and regulation, the vacuum that exists in terms of continuous independent monitoring and the proposition that CCFTV urged providers and regulators to adopt to really protect vulnerable people. The sad thing is that had such systems been in place during the pandemic, many of the issues families subsequently faced would have not occurred, been fully explained or provided much-needed assurance and comfort during a period of enforced family absence. With over 400,000 registered care home beds in the UK, it was this area of social care that had for many years been subjected to significant public scrutiny, primarily because of notorious and graphically exposed abuse issues. For 30 years and more, those same sector abuses had continued unabated and despite such incidences being a relatively small percentage of the overall sector population, the likelihood was that reported matters were likely ‘the tip of a much larger iceberg’ that remained unreported. The five years before the pandemic onset, over 100,000 safeguarding referrals had been investigated in the UK at a very significant cost in terms of time and manpower used.

Many of those investigations undoubtedly reached conclusions based on probability rather than evidence. Some will have reached no conclusion at all given the absence of evidence of any kind or indeed no witness support.

A 2016 poll of a public sample group confirmed that 52% of people believed abuses were ‘a regular event’ in care homes. That was a shocking indictment of a care sector that local authorities and the NHS completely depended upon, yet had failed repeatedly it seems to restructure to ensure quality care services were of a consistently high standard.

With public trust and confidence so low in the Care Home sector, it seemed reasonable to conclude that safety monitoring systems use should be implemented in the hope that would promote much greater transparency, deliver much more certainty and possibly improve trust relationships between all stakeholders, whether that be families, commissioners or regulators. Above all, we believed it would further protect very vulnerable people.

Whilst our campaign relates to the aged care sector, the use of such systems need not be purely for the independent sector care homes but also the voluntary, charitable and public sector facilities. Resident profiles in all settings are similar, in that many of the people living in all homes suffer from illnesses that make them vulnerable, whether that be a form of dementia, a physical disability or a mental health issue. In many cases, residents are not able or willing to self-determinate or articulate their concerns and therefore they require systems that will ensure they are safeguarded and protected. Families in such circumstances want systems that will ensure not only are their loved ones safe but any issue is independently reviewed and resolved accordingly.

Many care homes provide services for chronic dementia sufferers. A typical profile may include a significant level of confusion, bouts of aggressive and challenging behaviour, aimless wandering, periods of despair and depression and often an inability to decide about their own welfare. Several vulnerable residents with similar profiles living together mean volatile incidents can often occur whether that be resident on resident or with staff or other relatives involved.

It is our belief that camera led, consent-based monitoring systems promote safety whilst respecting privacy, that they provide visual and audio evidence to manage risk appropriately and ensure that the quality of care promised is the quality of care received. Systems encourage and promote respect of the individual and above all else act as a deterrent for a hobby abuser.

The Winterbourne scandal was perhaps an example of cultural abuse at its very worst. For months on end, residents were routinely abused as a sport for staff and it was only when an undercover reporter using a hidden camera, exposed the culture of abuse in that facility, that is was eventually closed. It did however result in the Government decision to cease placing people with learning disabilities in a large hospital and institutional settings and rather seek placements in small community based residential homes.

Regrettably (whilst that has been an improved experience for some) it did not resolve the issue of ongoing abuse of such vulnerable people. Since Winterbourne further abuses have been reported in small home environments usually with residents who have been unable to articulate their concerns. Often issues only ever surfaced as a result of hidden camera footage confirming the abusive behaviours.

Many thousands of vulnerable people live in small community homes and again they are often underrepresented. A younger group of people moving towards middle age with family members who are elderly and in some cases, frail parents who had previously been the carers. Their ability to oversee the care delivered in the care facility is often limited by physical infirmity or simple geographical location.

Sadly over many years, there have been very many abuse exposes yet no structural change has ever resulted in eradicating such incidences.

It was against this backdrop combined with the experience of having had a loved one failed in care that CCFTV commenced campaigning for greater transparency for families around care delivery for their loved one

Very quickly our campaign began to expand its remit. Whilst initially campaigning for safety systems, it also quickly became obvious that many residents families required a voice to represent them. In my own experience speaking out and not accepting inadequate levels of care, resulting in a relationship breakdown with staff providing the care. That quickly moved on to an imploding relationship with the owner/provider as often a choice was made to support staff as opposed to addressing consistent service shortcomings. Of than that process ended up with a notice of eviction and the resident being moved to a different environment.

In our early days, we were inundated with similar stories that all appeared to follow a thread of poor service, concerns raised, promises of sustained improvement, a failure to deliver, concerns raised again and eventually a family being asked to find alternative accommodation for their loved one. That was a process of material conflict and discord when in reality all that families wanted was sustainable levels of quality care in tandem with regular communications as to the welfare of their elders. Families expected to be able to rely on regulators to enforce those objectives, yet time and time again they were failed.

Inspection and Regulation

Most Health and Social care providers are subject to inspection from the Care Quality Commission (CQC) which uses a framework of inspection relative to the Care Standards Act. Inspection personnel are usually based in the geographical locality in which any provider is operating and as a result, inspectors often don’t have to travel too far to attend a care home. That is supposed to facilitate announced and unannounced inspections at any time of a given day.

However, with the best will in the world, an inspection is but a ‘snapshot’ in time. It is likely inspection personnel will be on-site for around 12-15 hours across two consecutive inspection days. Over a year it is unlikely any provider will experience more than circa 36 hours of inspection unless in ‘special measures or had an inadequate rating. In such circumstances, inspectors may spend much more time at a given site.

Our point however is that 36 hours per annum as an average is woefully inadequate simply because at a moment in time service was adjudged to be acceptable and meeting standards during that visit. Many very concerning situations have been exposed in homes that had apparently ‘good’ ratings in prior reports. Some of those issues appeared cultural in nature that was simply not visible on the day of inspection

This inspection timetable and process all but disappeared during Covid lockdowns and with families also absent, no independent third party supervision existed for months on end

CCFTV and Pandemic Demands

Quite simply, our day to day workload exploded.

Covid Infection Panic Impact

From the very early days in March 2020, we began to receive calls from families expressing material concern about the transfer of their loved ones from hospital wards to care homes. Families felt proper assessment had not been afforded for care home suitability and indeed lockdown meant that families could not themselves assess a care home prior to transfer. It was also obvious to us following dialogue with providers, that care homes were pressurised to take admissions to facilitate the freeing up of beds in the NHS. This was at a time when no testing was in place.

The then Health Secretary (MH) was publicly stating that care home residents were protected via a ‘ring of steel’ yet the feedback from both providers and families was that older people were transferred from hospital to homes without any testing and without any demands for precautionary isolation. Right at the outset, PPE was simply not available and many care home staff were unwittingly exposed to Covid as transferred residents had not been tested. Providers had masks and gloves but little else.

With hindsight, we are of course able to see that Covid infection was on many occasions likely to have been introduced to Care Homes via hospital transfers. The impact in many homes was a very significant number of deaths in March and April 2020.

Visiting Embargoes

As calls to our helpline continued in those months, Providers followed revised advice to lock down care homes and exclude all but staff. Many families became very distressed knowing that elders were desperate to see them and because of their dementia, very confused as to why no family member visited for months on end. Families were at times offered facetime/videocalls with residents but that was not terribly effective as many homes suffered from staffing shortages as staff had to isolate when infected.

CCFTV became very concerned when the family calls raised the same concerns, that when an infrequent facetime call was arranged, notable deterioration in the elderly resident's appearance was noted. Many families had horrific experiences when receiving calls and being told their loved one had tested positive for Covid, but no offer was made for them to come to visit even with PPE use. On a number of occasions, the next call was to tell them that their loved one had died. That misery was further compounded for many when they couldn’t attend a funeral and residents were buried/cremated without family present.

Visiting embargoes also excluded the regulator, at a time when homes were experiencing serious but understandable staff shortages. But families could not assist and therefore many residents it appears received a poor service with often only the basics available. CCFTV received many calls from staff confirming such and expressing real anguish themselves for the plight of older people in their care.

CCFTV documented in excess of 700 family experiences of distress and concern in those first few months of the pandemic in early 2020.

We also received calls from families with elderly loved ones in the hospital. They were also excluded from visiting and yet decisions about the welfare of their loved ones had been taken in their absence. An example would be the frequent use of Do Not Resuscitate orders (DNR) being applied to case notes in the event of a Covid infection. Many families were not consented or consulted about such, but only discovered that instruction after their loved one died.

Every single day we were receiving copious calls detailing all or some of the above points. Family members were incredibly distressed at the lack of communication, the swiftness of the infection claiming lives and the seeming obsession with not overwhelming the NHS that meant older people were not even close to being adequately protected in those early months.

CCTV continued to implore and lobby ministers to allow one dedicated family member to attend care homes to provide the support and reassurance that residents clearly needed. Those pleas fell on deaf ears and most remain unanswered to this day.

Lockdown easing

During these periods CCFTV sought to engage with providers and safeguarding teams on behalf of distressed or grieving families who had little or no experience of how the complaints procedures/safeguarding processes worked. During the lockdown, most of those meetings were virtual with no ability to really pore over evidence or review a care home environment.As lockdown eased and some restrictions were lifted for the general population, care home visits continued to be curtailed. We had the ridiculous situation of family members at bedroom windows simply to see their loved ones, care homes setting up pods in which older people were separated from their family by a glass divider etc.

It was at this point that many families were seeing older parents for the first time since the pandemic. Again as a result, we were overwhelmed with calls for help and support as families noted the serious decline in loved ones. They had received no explanation or communication explaining that deterioration. No regulator visits had been undertaken, safeguarding officers had not attended homes and therefore no witness or investigation had occurred in very many instances. CCFTV proceeded to raise family concerns with providers, safeguarding teams and social workers. We attended numerous provider and safeguarding meetings in a family advocacy role in an effort to get some answers for those who had lost elders and for those who post-pandemic had returned to care homes and barely recognised their family members.

A significant number of those meetings were acrimonious particularly with those providers who could not adequately explain the circumstances around a particular residents welfare. During the pandemic, the numbers of residents suffering ‘unexplained injuries’ increased very materially. Families naturally were seeking an explanation and when none was forthcoming, many families found that unacceptable. Trust in providers was severely eroded and in some cases the acrimony resulted in providers issuing eviction notices to families, giving them 30 days to move a resident. CCFTV attempted to persuade providers to withdraw those notices given the vulnerability of a number of the residents affected. The vast number of families we represented simply wanted answers and to know that care would be improved. That on too many occasions was met with hostility and an effort to resolve the problem by removing the resident.

The following links are a sample of actual cases in which CCFTV assisted families;

Many of those are summarized in the families own words. Their distress is palpable and it is their collective hope that by sharing these summaries, other older people will be safeguarded in a way that will ensure no repetition of these horror stories

https://www.carecampaignforthevulnerable.com/casestudy/1240/concerns-in-my-late-dad-s-care-during-covid-is-now-substantiated-after/

https://www.carecampaignforthevulnerable.com/casestudy/1230/failing-to-recognise-the-mental-well-being-of-our-most-vulnerable-duri/

https://www.carecampaignforthevulnerable.com/casestudy/1226/our-late-grandad-was-let-down-with-his-care-he-s-not-just-a-covid-stat/https://www.carecampaignforthevulnerable.com/casestudy/1210/mum-s-been-served-notice-to-leave-her-care-home-after-i-asked-for-esse/

https://www.carecampaignforthevulnerable.com/casestudy/1007/families-are-stripped-of-the-right-to-be-with-loved-ones-because-they-/https://www.carecampaignforthevulnerable.com/casestudy/1204/families-still-fighting-for-access-to-gain-essential-caregiver-status/

https://www.carecampaignforthevulnerable.com/casestudy/1189/my-aunt-had-do-not-attempt-cpr-dnacpr-placed-against-her-wishes/

https://www.carecampaignforthevulnerable.com/casestudy/1188/my-mum-was-left-with-a-fractured-collar-bone-for-four-days-with-no-med/https://www.carecampaignforthevulnerable.com/casestudy/1183/we-visited-our-dad-who-has-since-passed-away-and-we-were-shocked-when-/

https://www.carecampaignforthevulnerable.com/casestudy/1111/my-elderly-mother-is-not-allowed-her-own-phone-due-to-covid-safety-fea/

https://www.carecampaignforthevulnerable.com/casestudy/1121/councils-leave-care-staff-struggling-to-cope-with-testing-visitors-in-/

https://www.carecampaignforthevulnerable.com/casestudy/1160/during-lockdown-we-were-unhappy-with-the-home-s-communication-regardin/

https://www.carecampaignforthevulnerable.com/casestudy/1151/ten-unrelated-covid-deaths-in-my-dad-s-care-home-now-cqc-rated-inadequ/

https://www.carecampaignforthevulnerable.com/casestudy/1140/our-care-home-was-effected-by-covid-and-now-we-can-t-get-our-resident

https://www.carecampaignforthevulnerable.com/casestudy/1125/devastated-families-told-loved-ones-care-homes-won-t-be-opening-doors-/

Safety Monitoring Use

Despite all the aforementioned information and the vast number of reported abuses over the last thirty years, very few care providers actually use surveillance systems. Most have confirmed such systems are last resort and therefore adoption of such is unlikely without either regulatory enforcement or demand from service commissioners that such systems are a contractual requirement.

The sad thing is many of those providers accept that they can never fully know what goes on it any particular care home all the time. The larger groups tend to have quality assurance systems yet many of those groups continue to experience poor inspection report findings and on occasions, reported abuses.

For those who argue that care selection, exhaustive training and extensive induction of staff will eradicate abuse, I say that has been tried for very many years. Providers do not naturally seek to deploy poorly trained staff given they know the risks to residents and to their reputation. Providers are very aware that the risk of long and protracted admissions embargoes result from serious complaints, so it is totally in their interests to provide a high-quality service.

CCFTV has visited but a handful of providers who use safety monitoring services simply because most providers have decided not to progress with such systems until mandated to do so. The idea that third party professionals have remote access to assess care at a moment in time and retain footage to explain an untoward incident remains anathema to them. The very thing that families consistently request to provide transparency, clarity and reassurance continues to be denied to them by most of the care home providers.

Camera technology systems potentially could be the ‘silver bullet’ the sector has been seeking. It appears to CCFTV that despite many other positive initiatives, such as training, induction, recruitment screening, supervision etc, many unacceptable practices exist. The pandemic has merely magnified those issues and demonstrated how unprepared we actually were to provide oversight and transparency for our most vulnerable during a period of national crisis. Indeed that community suffered disproportionately when it came to infection rates and subsequent fatalities. Whilst one could argue that perhaps that could have been expected given health vulnerabilities, the reality was too little was done to protect Care Home communities.

It is our view that the enquiry team should not just consider Government handling and the management of the pandemic, but also consider the options for addressing those same very shortcomings should such an event ever happen again.

Care Campaign for the Vulnerable previously initiated a petition asking the Government to consider introducing legislation to require all care providers operating dementia care facilities to install safety monitoring systems into all care homes. It achieved 10,000 signatures in early 2017. This was the second petition Government received about use in care facilities. Regrettably, the Governments response to that first petition was ambivalence. It is our fervent hope that as a consequence of reflecting on the impact of the pandemic, the resultant lockdowns, the long periods without third party supervision and regulation, a mindset change will result in the adoption of such systems as part of the essential care home toolkit for delivering a high-quality sustainable service.We continue to represent so many grieving families who have lost loved ones in very difficult circumstances. They have yet to receive an adequate explanation or comfort as to how that family member died, whether they were comfortable if they were alone or at peace. That really has to be addressed to ensure that experience is never again the status quo for families in the event of future pandemics.