Written evidence from Leonard Cheshire (HCS0021)
Submitted by the Influencing team at Leonard Cheshire
1.1. Leonard Cheshire is a global pan disability charity. We support individuals to live, learn and earn as independently as they choose, whatever their ability and to play our part in creating a fair and inclusive society. We are led by people with experience of disability.
1.2. In the UK, alongside activities to support disabled people into work, Leonard Cheshire also supports disabled people with social care. We provide over 120 care services across the UK, including supported living facilities, care homes and nursing homes. Our UK care services support over 3,000 people, many of whom have a range of complex disabilities and health conditions.
2.1. The Covid-19 pandemic has been an extremely difficult time for both our residents and staff working in our care services. In particular, people with cognitive impairments have struggled to understand why their routines and activities stopped. Our staff have worked tirelessly to keep our services safe, often working extra hours to cover the shifts of colleagues ill or self-isolating. This has resulted in fewer deaths in our care homes in 2020 than in the previous year. We have drawn on the lived experiences of our staff and the disabled people we support, including through interviews with both groups, to inform our response to this consultation.
3.1. We believe all human rights need to be upheld in care settings. However, there are four key rights as outlined in the Human Rights Act 1998 which are particularly important and need a specific focus in care settings.
3.2. Firstly Article 2 or the ‘Right to Life’ has particular importance. With advances in health and social care, many nursing care providers are now able to protect the right to life of disabled people including those with complex needs. Our nursing homes now provide care which in the past was only provided on acute hospital wards, including supporting people who are minimally conscious, on ventilators. As acute hospital beds are limited, we are able to provide an alternative, and a much more social, personal and empowering setting for people who may need life-long intensive nursing care.
3.3. Care providers like Leonard Cheshire also uphold Article 3 of the Human Rights Act 1998, or the freedom from torture and inhuman or degrading treatment. Nationally, all care providers are required to have safeguarding policies and procedures. These policies aim to protect people in care homes from intentional harm, non-intentional harm and neglect – including inhuman and degrading treatment. At Leonard Cheshire we have strong governance arrangements, reporting safeguarding concerns and incidents to senior management, trustees, as well as externally to commissioners and regulators. We are committed to the Local Government Association and ADASS’s Making Safeguarding Personal approach to safeguarding[1], by involving victims as active decision makers.
3.4. People who are described as having ‘challenging behaviour’ are the least well protected from inhuman and degrading treatment. Challenging behaviour can be defined as any behaviour of an individual which has the potential to cause physical or psychological harm to themselves, another person, or to property around them. Many people who we support with ‘challenging behaviour’ have previously had frequent disrupted and difficult placements in highly restrictive settings. They mostly remain deprived of their liberty (with a DOLS – Deprivation of Liberty Safeguards authorisation) as a legal safeguard.
3.5. The Care Quality Commission (CQC) in its recent ‘State of Care Report’,[2], reported that closed cultures in care homes put people at risk of abuse; and that the pandemic created closed cultures with far fewer face to face visits from family, commissioners and professionals. We highlight lessons learned from the pandemic in section 6, however it is important to emphasise the need for disabled people to at the very least consulted by the government, regulators and commissioners to prevent cultures where restrictive practices become the norm.
3.6. Article 5 of the Human Rights Act 1998, or the ‘Right to Liberty and Security’ is of utmost importance to care providers like Leonard Cheshire. This is seen as the right to personal freedom and the right to make decisions about one’s own life. For disabled people, and those with serious health and care needs, this starts with whether they have the choice of where they can live. Too often disabled people are not given the choice of living in their own homes. This lack of choice is driven by the pressure on the funding available for an individual’s care package from commissioners like local authorities. People also frequently enter care homes with a care plan which states they are not to leave the home un-escorted and this is often ‘authorised’ by local authority DOLS teams. The decision to restrict these freedoms is made neither by care providers nor by the people themselves, but by a system which has financial thresholds which prevent both care at home or access to the community for people with high care needs.
3.7. Within care settings this right to liberty is expressed in many different ways. It includes whether people can choose how they spend their days, what they eat, and what activities they choose to do. At a larger scale it includes whether people can engage with their community as freely and as frequently as people who do not live in care settings. However, funding restrictions from local authorities and Clinical Commissioning Groups (CCG) means that it is difficult for care providers to put in place the staffing and resources needed for residents to safely and frequently participate in activities in the community. This is particularly the case where individuals need to be supported on a one to one basis with staff. Increasingly, local authority and CCG care plans and funding formulae provide little or no funding for social activities, or engaging in ‘freedom in the community’. Their budgets are for essential needs such as personal care, not for rights such as freedom to participate as citizens in the community.
3.8. The final crucial article from the Human Rights Act to uphold is Article 8, ‘respect for your private and family life, home and correspondence’. People living in care settings have the right to live a life privately including the right to develop one’s personal identity and to forge and maintain friendships, family and other relationships. This includes a right to participate in social, cultural and leisure activities. As outlined in 3.6 above, this is often difficult for people living in care settings to achieve and has been particularly impacted by the pandemic. Our residents have suffered immensely through the loss of contact with family, particularly those who could not understand the reasons why their visits to and from their family had stopped.
3.9. The lives of people in most care settings are closely documented through daily notes, care plans which contain a great deal of personal information, and notifications to regulators and through behaviour plans. In some ways people in care settings have the least privacy of any other group of people; in the name of their safety, their lives are opened up to large numbers of staff, professionals and inspections. This appears to be tacitly accepted by many but does cause challenges at times in relation to individuals’ personal and intimate lives. This needs to be addressed when supporting people in care settings to enjoy their full human rights.
4.1. Care providers, like the rest of society, need to balance safeguarding with empowerment. On the side of safeguarding are commissioning and contracting agreements which require providers to notify the local authority safeguarding team, commissioners and regulators of safeguarding incidents. These are formidable forces – contracts can rightly be terminated if notifications are not made and regulators can and will label a provider as inadequate.
4.2. There are few day-to-day agencies on the side of empowerment. Instead, the Court of Protection and the case law around the Mental Capacity Act 2005 have been the most vocal in holding local authorities and health services to account for breaches of human rights. The Court of Protection has understood that in the main it is local authorities who make the major decisions which restrict the human rights of people in care homes: it is the local authority expectation that safe care includes preventing most people from accessing their community without staff chaperones, yet it does not fund this community escort.
4.3. It is imperative that care providers strictly respect people’s human rights within care settings. Where the organisation’s values and staff training support empowerment and managed risk taking, people will have greater access to human rights. Benefits include learning new skills or re-learning skills such as travelling alone and accessing new activities; participating in activities where there is a community of care around the person – a club, a church or an interest group. One of our services which promotes human rights and empowerment, has a recruitment question for all new staff: “What would you do if a resident said they wanted to go sky diving?” This is a test of values – would the staff explore new ideas and new opportunities with a resident or would they assume that people in care homes should be content with stereotypes of bingo and TV. The extent to which care providers can uphold human rights can be negatively affected if funding is not in place to effectively resource activities and recruit staff.
4.4. We asked some of the people we support which human rights they most value. They stated that they valued the ability to go out much more; to feel part of wider society; to experience being a consumer, a person with interests and hobbies and friends; being a valued and active member of their family and to make many more choices. Those who had close families wanted be supported in these activities by their families; others wanted to participate more with staff. Young people wanted opportunities to meet with peers in ‘normal’ social situations - many young people in care settings felt discriminated against by the lack of opportunities for disabled young people.
5.1. Regulators are generally effective in addressing safety and safeguarding. The CQC has safeguarding as one of its ‘key lines of enquiry’ – this means they search for notified and unnotified incidents when they conduct their inspections. These can include a minor incident such as a wheelchair not being adequately cleaned, to a major incident such as sexual abuse. Regulators in our experience, always ask about the safety of residents and always delve into policies, procedures and practices Leonard Cheshire implements to keep people safe.
5.2. However, no amount of attention to safeguarding from regulators can protect residents from ‘rogue people’ – from those who may intentionally set out to harm; nor from accidents and mistakes made by individual staff. What a regulator can and should do, is notice if a culture is developing where harm or abuse is normalised.
5.3. Regulators are generally much less interested in Article 5 of the Human Rights Act 1998 – the need to uphold our residents’ ‘liberty and freedom’. We rarely have questions about when residents last visited the cinema or theatre or when did they last make spontaneous plans to go out on a Saturday evening. Regulators’ interest in liberty is generally confined to checking that applications for DOLS have been made. We would welcome a greater focus on liberty, to prepare for the introduction of the new legislation – the Liberty Protection Safeguards.
5.4. Complaints are important; they are an indicator less of what has gone wrong than about how an organisation has responded to what has gone wrong. Where an organisation is open to dealing with problems, there will be complaints recorded, action taken and lessons learnt. Regulators should focus on the actions taken and the lessons learnt in response to complaints, whether an organisation investigates openly and fairly, apologises where necessary, recognise its mistakes and implements changes. It’s crucial that a culture of openness is fostered.
6.1. The pandemic has had a disproportionate impact on people in care settings including the 3,000 disabled people Leonard Cheshire supports across its care services. People living in care homes lost more freedoms than the general population. Many of our residents reported that they felt discriminated against by government-imposed restrictions. While the general population was allowed daily walks, the majority of people in care homes were not. While the general population had access to phones and ipads whenever they chose, care home residents were often dependent on staff time availability for contact with families. Many residents, particularly those with cognitive disabilities did not understand why their families stopped visiting.
6.2. There were three specific issues that appeared to our residents to be breaches of their human rights: a) whether individuals with cognitive and learning disabilities were expected to ‘self-isolate’ if they did not understand it, did not want to and were unable to choose to stay in their bedrooms for 6 months; b) whether these individuals could and should live without any face-to-face family contact when they did not understand the pandemic and as a result felt abandoned and distressed; and c) whether the restrictions on accessing the community were proportionate. The UK government’s guidance for care homes did not engage sufficiently and early enough with the Mental Capacity Act 2005 or with the Equality Act 2010 to address these issues.
6.3. A pandemic has a social impact as much as a health impact and requires social considerations to be built into the response at every stage. Unfortunately, the initial government guidance and legislation did not fully respect the rights and needs of disabled people. Although the driver to restrict the movement of people in and out of care homes was to protect people at risk from the virus, the result of this guidance caused many of the people in our care homes to feel discriminated against and had unintended consequences. For disabled people living at home, the easement of the Care Act 2014 facilitated by the emergency Coronavirus Act 2020 also resulted in the erosion of people’s rights. 55% of disabled people responding to a Leonard Cheshire survey stated that their care package had changed because of Covid, with many individuals having their care stopped altogether.[3]
6.4. The government was extremely slow to start talking about ‘reasonable adjustments’ in relation to pandemic policy. This should have been there from the start, enabling providers to adjust care regimes in relation to the individual needs of the people cared for. Providers were best placed to recognise those who most needed the adjustments.
6.5. Regulators and government failed to listen to, and to hear, the voices of disabled people throughout the pandemic, with disabled people having very little say over the policies and guidance being developed. Although charities like Leonard Cheshire advocated for the rights of disabled people, more needs to be done to consult with and gain the views of people living in care settings when producing policy and guidance. It is also crucial to learn lessons for the future.
6.6. Our residents also commented that government guidance and media attention during the pandemic resulted in care homes being perceived as unsafe and undesirable places. To many of our residents they were the opposite: they were, and are, safe places and they were and are staffed by people who were committed to keeping them safe.
7.1. Social care needs urgent investment. Although the recent Budget announced an additional £4.8 billion over the next three years for local authorities to invest in social care, this falls far short from the estimated £12.2 billion needed to recover peak spending and stabilise the workforce.[4] This is essential to ensure working-age adults are able to access the care they need, and have any care reinstated which has been reduced or removed. It is essential to safeguard the rights of disabled people living in care settings, ensuring they are able to participate in society, as well as ensuring that disabled people have choice and control over their social care.
7.2. Further investment in social care would also enable care providers to recruit and retain staff. The pandemic has resulted in many care staff leaving the sector, with an estimated 105,000 vacancies now existing.[5] Without sufficient trained staff in place, access to the community is difficult to facilitate, thus diminishing their quality of life and human rights.
7.3. Local authority and CCG care packages should explicitly fund access to and engagement with the community for all.
7.4. Disabled people were treated as an afterthought during the pandemic. Any future government policies or guidance from commissioners and regulators in relation to care should be co-produced by people with lived experience of social care, including those in care homes or supported living facilities. Where the policies impact people with cognitive impairments, families and advocates should be consulted with. This would prevent the erosion of rights seen in the pandemic.
7.5. The upcoming COVID-19 inquiry must be independent and wide ranging and must also have an equality remit, investigating the impact of the response on disabled people, in order to learn lessons for future disaster preparedness.
7.6. Regulators should value adherence to people’s right to liberty and right to a family life equally to people’s rights to be free from inhumane treatment and a right to life. The right to liberty should be assessed as part of inspections. We would particularly welcome regulators asking providers how they are promoting people’s liberty in care settings.
01/11/2021
[1] Local Government Association and ADASS, Making Safeguarding Personal toolkit https://www.local.gov.uk/msp-toolkit
[2] Care Quality Commission 2021: The State of Care 2020/2021
[3] Leonard Cheshire (2020), this data was taken from our Covid-19 survey of over 1000 disabled people and carers between March and June 2020.
[4] The Health Foundation (2020), The Health Foundation’s response to the Health and Social Care Select Committee inquiry on social care: funding and workforce. https://www.health.org.uk/sites/default/files/2020-06/Health-Foundation-submission-to-HSC-social-care-funding-and-workforce-inquiry.pdf
[5] Skills for Care 2021 https://www.skillsforcare.org.uk/adult-social-care-workforce-data/Workforce-intelligence/publications/national-information/The-state-of-the-adult-social-care-sector-and-workforce-in-England.aspx