Submitted by Mr Nathan Jones, Senior Policy, Research and Projects Officer at National Care Forum
We are responding to the Joint Committee on Human Rights call for evidence on Protecting Human Rights in Care Settings. We have supplied answers to the questions the committee has posed from the perspective of social care providers:
In our submission, we have outlined the work we have done to safeguard human rights in partnership with Rights for Residents and the Relatives and Residents Association, as well as others. We have also outlined some wider factors that the questions above do not address in ensuring vulnerable people have their human rights protected, wherever they happen to be. Many of the human rights’ issues facing those who draw upon care and support are part of the wider human rights’ issues on vulnerable people more generally in society. In our conclusion we outline what we think needs to happen to protect human rights for these individuals in care settings and beyond.
NCF is the voice of the not-for-profit care and support sector. Our members:
NCF works closely with a diverse membership of not-for-profit care organisations who are embedded in their local communities. Our members provide care and support to a wide range of people who are supported in their own homes, in residential care settings and in the community.
Contents
Summary of NCF position and work to advocate for a human rights approach during the pandemic
How effective are providers at respecting the human rights of people under their care?
Conclusion and Recommendations
The NCF has taken a consistent, balanced and active role in advocating for the response to COVID-19, be that policymaking, guidance or implementation, to take full account of people’s human rights. Examples include our work to highlight the early issues relating to DNACPR, campaigning for equitable access to PPE, testing and support for the care sector to help keep people safe wherever they receive care & support and the coalitions and partnerships we have built to strengthen our voice in advocating for visiting in care homes. See the timeline below for an outline of our activity in relation to our activity in advocating for care home visiting and relaxation of restrictions.
As the representative body for not-for-profit care providers, we have always clearly articulated the importance of balancing risks of harms during the pandemic. This includes balancing the risk of harm from COVID-19, the risk of harm of loneliness and disconnection from people’s loved ones and essential caregivers and the risk of lack of access to suitable specialist medical and clinical treatment due to the effective withdrawal of NHS services to vulnerable people receiving care and support.
We also believe there is an important element missing from the questions above. The inquiry needs to take full account of the ways in which the policymaking framework that surrounded the advice and guidance issued to the care providers during the pandemic had a significant and direct impact on the way services were to operate. The way in which public policy, especially public health policy, is designed and implemented, COVID or not, can have a negative impact on people’s human rights.
During the pandemic providers were constrained by the varying advice given by Directors of Public Health, Directors of Social Services, and guidance produced by PHE (now UKHSA) and DHSC. It is key to note that this guidance, while having no legal enforceability, essentially became ‘law’ for providers because insurers, local commissioners and local councils expected all guidance to be followed – including restrictions on visiting. Some local council areas, via their Directors of Public Health, also added their own restrictions.
We have made strong representations to DHSC throughout the pandemic (and continue to do so) that it is unacceptable to allow the rest of society to reopen but retain very restrictive ‘advice’ for those living in care homes and those that draw upon care and support in other settings. None of this has been helped by the limitations of policymakers in their ability to engage with older adults and people with learning disabilities/ complex needs when developing policy. The policymaking level and expertise and understanding of context therefore also needs to be considered when thinking about protecting human rights.
Timeline of NCF activity and influencing during the pandemic
March 2020: At the very start of the pandemic, we were calling for support for the sector to respond to the very challenging situation and to challenge the hospital discharge arrangements to make them safe for care settings. We were also instrumental in creating a statement on DNACPR orders with the Care Provider Alliance, the Care Quality Commission and the British Medical Association to highlight the issues of the misuse and blanket use of these Do Not Attempt CPR orders.
April 2020: extensive campaigning to highlight the impact of COVID-19 in care settings & the urgent need for testing, PPE, support from the NHS and community health services and support for the sector
May 2020: continued campaigning on the issue of testing in the care sector
June 2020: we led the development of the CPA visitor’s protocol in response to increasing calls from residents, friends and families, providers and staff to enable visiting to residential homes after a long and protracted period of ‘lockdown’, in line with changes within the wider community. We urged the government to act and bring forward new policy to enable visiting. Recognising the huge challenges faced by care providers, the people they support and their families to keep communications flowing during the pandemic, we worked with the Residents & Relatives Association to create a joint statement on Keeping Connected, endorsed by the Care Provider Alliance, the Care Quality Commission and Skills for Care setting out shared expectations and good practice relating to the importance of clear, open, transparent and regular communications during the COVID-19 pandemic.
July 2020: we continued our call for reopening of care homes and later in the month, limited guidance on care home visiting published for first time. We also produced a checklist to support families in understanding key questions to ask when looking for a care home during COVID.
November 2020 – as October saw the introduction of tiered restrictions in different parts of the country, we saw renewed restrictions on care homes depending on level of restrictions. We led a coalition of partnership in a Call to Action joint statement to keep care homes open for visiting during the second lockdown and to create the role of a ’key visitor’ – in essence, the essential care giver role. We then saw DHSC/PHE issue new visiting guidance, which set out options to maintain outdoor visits or screened visits for first time
December 2020: visiting guidance now contained measures to allow indoor visiting enabled by LFD testing but care homes don’t receive the tests in time and large parts of the country are put into Tier 4 from 19 December followed by an update to visiting guidance only allowing outdoor and screened visits.
February 2021: we worked in partnership with Age UK, John’s Campaign, Rights for Residents, the Relatives and Residents Association and the Registered Nursing Homes Association to issue an ultimatum to government alongside to reopen care homes & implement essential care givers by 1 March 2021; we call on the roadmap to include for the resumption of care home visiting. Later in February, the government announces they will issue guidance in March to allow one named visitor per resident from 8 March and include essential caregivers.
March 2021: the government published visiting guidance ahead of 8 March. See the NCF response. We also wrote a joint Blog on DHSC + Rights for Residents on the need to support care home visiting. We created the Partners in Care Resource with Rights for Residents, Age UK, the Relatives & Residents Association and others to encourage and support visiting and essential care giving and we created Partners in Care video resources in conjunction with Rights for Residents and Relatives and Residents Association
April 2021: care home visiting guidance updated to reflect that from 12 April each care home resident can name up to 2 people + essential care giver. Children under 18 can come in. Visiting out guidance updated to include more steps that should be taken to remove risks. The NCF raises a key issue on this visiting out guidance - the visiting out restrictions stop people from voting. We continued to call out the disparity between the measures for the rest of society and the measures in place for care homes from this point onwards. The NCF responded to news that government had listened to our concerns ahead of the local elections and decided to allow care home residents to go outdoors on low-risk trips
May 2021: Visiting out guidance has supplementary guidance added to allow care home residents to go on outdoor ‘low-risk’ trips such as visiting a friend or relative’s garden or to go on walks without having to isolate for 14 days. NCF Reform Ambitions published including a principle that a human rights approach must be embedded in any reform
June 2020: visiting guidance and visiting out guidance updated to reflect. 1 Care home residents should isolate following a visit only where it includes an overnight stay in hospital, or is deemed high-risk following an individual risk assessment. 2. Residents no longer should isolate on admission into the care home from the community. 3. Every resident can nominate an essential caregiver.
June 2021: Step 4 roadmap delayed – care home guidance updated. NCF response.
July 2021: Since July we have seen very little progress in removing the very significant restrictions that are still in place on visiting in and out of care homes; on 19 July, so called ‘Freedom Day’ saw the lifting of restrictions for the rest of society, but little change in the policy for care homes. We continue to push the importance of equity for those living in care homes in terms of opening up to visiting, both in and out of care homes.
In our view, this question is too narrowly focused – we must ensure that the human rights of all those that receive or need care and support no matter where they live are protected. Human rights in care settings are a reflection of the way in which wider society treats the human rights of vulnerable people and we feel it is important to have a much broader consideration of the human rights approach.
Thinking about the vulnerability of many of those who receive care and support, be they older people or people of working age with complex needs, there are a number of areas where the whole health & care system needs to be better at supporting their human rights; these include DNACPR orders, Advance Care Planning, Lasting Power of Attorney, enabling and empowering independence, choice and control as far as possible, joining-up services and wider person-centred care.
The DNACPR issue was highlighted during the early weeks of the pandemic and the CQC rapid review found a need for better training, information and support across the health and care system, a consistent national approach to care planning and the need for improved oversight and assurance. DNACPRs are clearly an important part of advance care planning and as the CQC highlights, ‘there is a need for a consistent national approach to advance care planning and DNACPR decisions, and a consistent use of accessible language, communication and guidance to enable shared understanding and information sharing among commissioners, providers and the public.’ This need goes well beyond care settings, into health settings - people need help to think about these issues and put appropriate plans in place.
The COVID-19 pandemic has highlighted existing inequalities, especially for certain groups such as people with learning disabilities (see this PHE report and this CQC report). While some of these groups will be living in care settings, many will not and the wider health and care system has a responsibility to look to address some of these systemic inequalities. Measures to reduce these inequalities are urgently needed.
We talk later in our response about the importance of policy making recognising the importance of care settings as vibrant community hubs and the importance of helping care settings return to this.
Much of the policymaking during the pandemic has had a significant impact on the ability of care settings to maintain their community roles, to the detriment of the whole community living and working in those settings, and it is important that this does not become the norm in policymaking. Protecting and enabling people living in care settings to continue exercise all their human rights as fully as possible must be a clear priority for policymakers.
It is also important to note that the current workforce pressures in the social care sector are limiting the access to much needed care and support as providers struggle to respond to new requests for care. Alongside this, the ADASS’ rapid survey found that nearly 300,000 people were awaiting social care assessments, care and support or reviews in September 2021.
In our experience, the not-for-profit providers that make up our membership are very effective at respecting the human rights of the people they support, be that in care settings or in their own homes.
Thinking about care settings, care providers have worked hard to achieve a balance of interests in how they support people’s individual human rights and those of the collective communities in the setting, be that the people living there, their friends and families or the workforce. These are complex balances to achieve, especially given the toll that the pandemic has taken in care settings and the ever-evolving picture of advice, guidance and rules.
Care providers have been very mindful that the individuals living in their services have their individual human rights, as do their families and friends. There are also the human rights of the collective group of individuals living and working in their services to consider. At times, it has been difficult to balance those competing rights. The reason we developed all of our resources throughout the pandemic, including our Partners in Care resources, was precisely to help care providers, people using care services and their families navigate & balance these competing rights and responsibilities.
Our close working and partnership with organisations representing families and residents meant that we were very aware of the incredibly challenging situations many providers & families found themselves in. Whilst we worked proactively together, we know that for some residents and families, this has been a very distressing time, especially where providers felt unable to implement even the limited visiting options allowed by the guidance of the time.
Throughout the pandemic, many care providers have advocated very strongly on behalf of the people they support, including in the care and support services that are less visible than care homes, such as supported living, supported housing, day services and community services. Guidance and support for these types of services has always been insufficient and taken longer to emerge, despite the huge impact faced by the people who use these services. Day services and community services provide a vital support to family carers and people living at home, be that older people with dementia or younger people with learning disabilities and/or complex needs. The absence of this support has taken its toll on those people and their families. Carers UK found that:
- 55% of unpaid carers who use day services have reduced or no access compared to pre pandemic
- Only 13% of carers were confident they would get support they need in the next 12 months
- Six in 10 (62%) worried services will be reduced and nearly half (47%) worried about losing access to voluntary sector services because of funding cuts
- One in five unpaid carers who work would reduce working hours or would be at risk of giving up work altogether if they cannot access affordable and accessible care
Our members alerted us very early in the pandemic to the issue of the inappropriate use of DNACPRs and the blanket issuing of them. They also alerted us to the real impact of the hospital discharge guidance issued on 17 March 2020, which asked care providers to accept people from hospital without knowing their COVID status, in order to free up beds in the NHS to create capacity. They also shared their frontline experience of the shutting down of access to community health services and very limited access to NHS services and the difficulty they faced in getting access to specialist community health support for the people they were supporting. We relayed all of this information directly to the DHSC, the NHS, PHE and the CQC at the time in order to ensure these early warnings of significant problems could be addressed.
Many of our members took proactive action to limit access into their care homes in February/early March 2020, prior to lockdown because they were concerned about the spread of COVID. Then, as the first wave of COVID-19 eased, some of our members were pioneers of the essential caregiver role to enable visiting in their care homes in the summer of 2020, and in involving people living in their care homes to guide their approach to visiting. It should be noted that there are care home where residents and families collectively decided that they did not want any visitors as this would reduce the risk of COVID-19 spreading.
You can find further examples of providers who worked hard to create COVID-secure visiting arrangements despite changing expectations and guidance from central and local government in our Caring in COVID e-book.
LESS COVID research – early lessons from the pandemic to manage the care and support of older people. Early on in the pandemic, we worked with the University of Leeds with care home colleagues and NHS staff to understand their experiences of caring for older people with COVID-19 in the first few months of the pandemic. It was clear to us that the standard symptoms of COVID being used to diagnose were not the most prevalent ones in older people, so this project looked at the clinical presentation and illness trajectory of COVID-19 in older people. It also explored what worked well, and what more was needed, for providing the best care and treatment and lessons learnt for supporting older people in care homes.
The research was initiated by the NCF who were very keen to learn as quickly as possible from the early days of the pandemic and to share this learning to support the sector and to present helpful strategies to manage the care and support of older people in care homes during subsequent waves of COVID-19 outbreaks.
The research had very important messages for the sector including the importance of supporting our workforce’s wellbeing and mental health, ensuring we continue to provide good care in relation to COVID-19, so the people we care for can continue to thrive, as well as, survive, championing the expertise and skill of our workforce and expanding our use of digital technology to improve care and support
Equally, there were some key messages for the Government and key stakeholders within this research including taking lessons from the impact of hospital discharge into care homes without clarity on COVID status and having clear shared protocols for discharge, resolving the ongoing testing and PPE supply uncertainties; working in genuine partnership with the sector and putting the individual needs of older people at the heart of policymaking.
The lessons from this research feed nicely into considerations of human rights for those receiving care and support.
We have also worked actively with the international research community to understand & share best practice from across the globe.
It was clear from early on in the pandemic that digital access to services would be a very important component of supporting individual rights. Providers quickly took on board the opportunity to connect with NHS Mail, which enabled secure access to remote health services such as video conferencing and detailed exchange of sensitive health data between care and health providers.
They also utilised digital services such as electronic care planning to enable relatives to connect directly and have greater knowledge and understanding of the care that people were receiving. Enabling digital communication was also extremely important, and many providers utilised tools such as tablets and mobile devices to enable connection between those receiving care and their loved ones through Skype, FaceTime etc.
In the later months of the pandemic, providers took forward the enhanced digital health tools that became available to support the identification of symptoms including pulse oximetry. They provided training and support to staff as well as making substantial investments in systems and hardware to ensure that they maximised the opportunity to sustain connection and health via digital mechanisms.
Care is a highly regulated sector although the face-to-face nature of regulation and inspection changed significantly during the pandemic.
It was not until May 2021 that the CQC issued a statement about how important visiting was in care settings and their ongoing commitment to assuring themselves that care providers were enabling visiting to happen. They noted that they had included a mandatory question in their care home inspections, which looked at how visiting was being supported to happen in a safe way. At the time in May, they had done 1,282 inspections and found 95% were enabling visiting to happen, and action was taken with those 5% of providers where they had outstanding concerns. They noted 37 potential blanket bans on visiting where they took action.
It is important to note that the CQC also recognised that safe visiting during the COVID-19 pandemic felt very different to residents, relatives and loved ones from what they were used to.
The Local Government and Social Care Ombudsman (LGSCO) recently published its annual review of social care complaints for 2020 -21. The review covers both councils and independent care providers across England.
The annual review revealed that in 2020-21 the Ombudsman received 2,033 complaints and enquiries about adult social care. This included complaints and enquiries about 270 independent care providers, where the person arranged and paid for their own care. The Ombudsman found fault in 72% of all care claims they investigated. This was an increase on the previous year and was higher than was saw across local government as a whole. There were also significant spikes in rates of complaint in supported living settings, transport and disability grants. This suggests that the Ombudsman continues to provide and effective and powerful role in supporting the rights of people using care and support services.
It is also useful to note that the faults found by the Ombudsman in the review were generally not due to one-off errors caused by staff working under pressure, but caused by the measures employed by councils and care providers to mitigate the squeeze on their resources. The report highlights how the pressures of the pandemic have served to exacerbate existing concerns, rather than create a raft of new ones.
Some of the emerging complaint themes identified in the review include:
Overall, the Ombudsman’s annual review provides good practice, features case summaries that illustrate the real-life experiences of people who use services and the challenging environment that councils and care providers operate in, and offers guidance on how councils and care providers – as well councillors and boards who scrutinise those organisations – can make the most of complaints to improve services.
The inquiry needs to take full account of the ways in which the policymaking framework that surrounded the advice and guidance issued to the care providers during the pandemic had a significant and direct impact on the way services were to operate. The way in which public policy, especially public health policy, is designed and implemented, COVID or not, can have a negative impact on people’s human rights.
Often providers were constrained by the advice being given by Directors of Public Health, Directors of Social Services, and guidance produced by PHE (now UKHSA) and DHSC. On this latter point, guidance, while having no legal enforceability, essentially became ‘law’ for providers because insurers and local commissioners expected all guidance to be followed, including restrictions on visiting. Some Local Council areas added their own restrictions. We have been making it very clear to DHSC throughout the pandemic it is unacceptable to allow the rest of society to reopen but neglect residents of care homes and those that draw upon care and support in other settings.
Think Social Care First: the government must use its reform plans to put social care at the heart of its policy planning, to think Social Care First and design a social care system that is person-centred, fair and fit for the future.
Social care matters. It matters to the millions of people who use it now every day; it matters to the 1.52 million strong workforce supporting people every day; to millions of unpaid carers; and to the 18,200 organisations providing it.
It matters to the NHS who are facing huge pressures because without social care, people have to remain in hospital, even though their acute healthcare needs have been met, preventing others from gaining access to vital healthcare.
It matters to all the people and their families who are struggling at home and are in need of care and support to help them continue to live safely and well.
We entirely agree with the joint Health and Social care & Science and Technology Committees report: The lack of priority attached to social care during the initial phase of the pandemic was illustrative of a longstanding failure to afford social care the same attention as the NHS.
In our view, the pandemic has highlighted the lack of clarity in some areas in relation to the rights of those who draw upon care and support services, including but not limited to those people living in care homes.
It has been clear throughout the pandemic and the government’s response that many types of care setting and care services are not very visible to policymakers – these include supported living, supported housing, day services and community services. Guidance and support for these types of services has always been insufficient and taken longer to emerge, despite the huge impact faced by the people who use these services. Day services and community services provide a vital support to family carers and people living at home, be that older people with dementia or younger people with learning disabilities and/ or complex needs. We do not believe that many of these services have yet returned to the pre-pandemic level of provision and are concerned that commissioning practice may mean that they never do.
Any proposed action in relation to the human rights of those using care and support services should consider the wider range of care settings and services that people use, including less formal, non-regulated services such as community & day services and think about the rights of those living in the community but still in need of care & support.
Balancing rights: Thinking about care homes, the pandemic has raised challenging issues about human rights, in particular that of individual rights versus collective rights, including a provider’s duty to provide a safe service for all its residents.
Care providers have worked hard to keep people safe, both those who draw on care and support and those providing it. They have had to navigate constantly changing advice and guidance at the same time. They have been very mindful that the individuals living in their services have their individual human rights, as do their families and friends and that there are also the human rights of the collective group of individual living and working in their services. At times, it has been difficult to balance those competing rights. The reason we developed our Partners in Care resources was precisely to help care providers, people using care services and their families navigate & balance these competing rights and responsibilities.
Equity of access to health care: The pandemic has also raised issues about equity of access to health care, both for people living in care settings and for the wider group of people who draw on care and support. For those living in care settings, especially in the early months of the pandemic, it was very difficult to get access to routine health care. The introduction of Enhanced Health in Care Homes was designed to address this, but the effectiveness and impact of it remains patchy and access to and support from GPs is variable – and of course, it only applies to care homes, not other care settings. As the pandemic progressed, access to NHS services for people living in some care settings has been affected due to public health advice, such as 14-day isolation periods on return to the care setting.
Returning to vibrant communities in care settings: It feels that the current policy making for care services, especially care homes, has been strongly influenced by two things:
Building future resilience: One of the key learnings from the pandemic is that social care needs help to build its resilience in future. This means better policy making, better understanding of social care & those who use it and better practical and financial support for that resilience, be that future proofing the design of care settings to avoid some of the lessons learned from COVID and visiting lockdowns or be that a more resilient and supported workforce.
Ensuring voices are heard: during the last 18 months, it has been clear that the voices of those using social care and those working in and providing social are have struggled to be heard by policy makers. Within the social care sector, there has also been concern that the voices of those using care and their families have not been heard.
The role of advocacy is crucial, especially for those who do not have family and friends to advocate on their behalf, as is enabling voices to be heard and building trust. Legislative robustness does not necessarily make a difference on the ground but good and trusted relationships do. In recognition of the potential lack of advocacy, the NCF developed in partnership with AWOC the Ageing Without Children Toolkit to enable care providers to become AWOC confident; by this we mean understand the issues affecting people ageing without children and ensure they feel included and confident to access support, participate in activities and the community and able to raise concerns without fear of judgement and exclusion.
We note the call from residents and relatives’ groups for the Government to enshrine in law the right of everyone living in a care home to nominate an essential visitor/caregiver who will be enabled to visit in any situation and we understand this call.
As you will have seen from the timeline of our advocacy, the NCF has taken a very consistent, balanced and active role in advocating for the response to COVID-19, be that policymaking, guidance or implementation, to take full account of people’s human rights
There a number of key points that need to be considered alongside the call for legislative action:
Balancing rights: clearly, those people receiving care & support have their individual human rights, as do their families and friends; equally, there are also the human rights of the collective group of individual living and working in their services. During the pandemic, at times, it has been difficult to balance those competing rights, so care providers need help and support to do so.
Balancing risk of harms: the pandemic has shown very starkly the difficulties in balancing the risk of harm from COVID-19 and the risk of harm of loneliness and disconnection from people’s loved ones and essential caregivers. It seems clear that for much of the time, this balance was not achieved due to a focus on the risk of harm of COVID, given the very visible toll it took on care homes. But it is also important to note just how clinically vulnerable many of the people receiving care and support are and the huge responsibility on those providing care and support services and those visiting them to keep people safe from all harms.
Future proofing and building resilience: social care needs help to build its resilience in future. This means better policymaking, better understanding of social care & those who use it and better practical and financial support for that resilience, be that future proofing the design of care settings to avoid some of the lessons learned from COVID and visiting lockdowns or be that a more resilient and supported workforce.
Social care is more than just care homes: any proposed action in relation to the human rights of those using care and support services should consider the wider range of care settings and services that people use, including less formal, non-regulated services such as community & day services and think about the rights of those living in the community but still in need of care & support.
Liz Jones, Policy Director
Nathan Jones, Senior Policy, Research & Projects Officer
02/11/2021