Written evidence from the Department of Health and Social Care (DHSC) (HCS0064)

 

Our approach to adult care and support

  1. The government believes firmly that the core purposes of adult care and support are that people have choice, control and support to live independent lives; can access outstanding quality and tailored care and support; and find adult social care fair and accessible, with their human rights front and centre of this vision. Stakeholders, particularly disabled people's organisations, have emphasised the importance of rights-based approaches to delivering social care. The Care Act 2014 brought together existing laws and was created to ensure the wellbeing of any adults with care and support needs and to bring about the personalisation of care services, putting the person and their human rights at the heart of the process. While wellbeing is a broad concept, where a local authority is arranging or paying for care for people with care and support needs the Care Act 2014 highlights that those people should be treated with respect, should have control over their day-to-day life, and should be enabled to participate in work, training, education or recreation, among other elements.
  2. Local authorities should actively be seeking improvements to the wellbeing of anyone with care and support needs, but how they do this will vary by individual. This government recognises that everyone has individual desires, hopes, dreams and needs, and under the Care Act 2014 local authorities should consider the person for who they are, and work with them to bring about their potential.
  3. Alongside the framework offered by the Care Act 2014, this government recognises the importance of balancing the rights that all individuals have under the European Convention on Human Rights (ECHR). Making best interests’ decisions has also required balancing the human rights of the individual against those of others. These considerations run through the legislative and regulatory frameworks which govern adult social care, as well as the government’s approach to specific challenges ranging from workforce skills and training to Deprivation of Liberty Safeguards (DoLS).
  4. Although the Human Rights Act 1998 only applies to public authorities, the Care Act 2014 makes special provision to apply the Human Rights Act 1998 (and the incorporated ECHR rights) to private social care providers, where the care they provide is being arranged or funded by local authorities. This allows those receiving care arranged or funded by local authorities to take action against social care providers for breach of their human rights. The government believes that every individual has the right to be treated with dignity, in a caring therapeutic environment which is free from abuse.
  5. During the COVID-19 pandemic, we continued to make judgements based on the best available clinical and scientific evidence to manage the public health risk posed by COVID-19 to older adults, disabled people, autistic people, and people with learning disabilities. Given the specific vulnerabilities of these people to COVID-19, the government has continuously reviewed its legislation and published guidance to ensure it appropriately balances the risk to the lives of people in care settings against their other human rights. 

Safeguarding the rights of individuals in care settings

Legal Framework

  1. The Care Act 2014 has multiple sections which directly and indirectly relate to the human rights of those with care and support needs, with duties to ensure that their rights and wellbeing are respected. Section 1 of the Act is often referred to as the ‘wellbeing principle’, as it states that local authorities must promote wellbeing when carrying out any of their care and support functions in respect of a person. Section 8 of the Act sets out that the needs which adults have for care and support will be specific to that individual, and there are many ways in which local authorities can meet such needs, while Section 9 established that any assessment of an adult’s needs must consider how the person’s needs impact on their wellbeing and the outcomes that an individual wishes to achieve in day-to-day life. Section 42 requires a local authority to make enquiries, or to ask others to make enquiries, where they reasonably suspect that an adult with care and support needs in its area is at risk of neglect or abuse and unable to protect themselves, including financial abuse. Section 73 is explicit that care providers regulated by the Care Quality Commission (CQC) in England, or by equivalent bodies in the rest of the UK, are exercising a public function for the purposes of the Human Rights Act 1998 when providing care and support, arranged or funded in whole or in part by local authorities. Those purchasing private care have legal recourse against a provider via their contract or through criminal or tort law. The Public Sector Equality Duty (s.149 Equality Act 2010) also applies to local authorities when they carry out their functions or services, and means that they must have due regard to the need to eliminate discrimination, similarly to protection from discrimination (Article 14 ECHR).
  2. Complementing the Care Act 2014, other relevant expectations and safeguards are set out in particular in the Mental Health Act (MHA) 1983 and the Mental Capacity Act (MCA) 2005. The MHA 1983 provides mainly for the compulsory detention, and the provision of medical treatment to, people with a mental health disorder and sets out important rights and protections – for example rights for advocates, relatives and others to represent patients, and for an independent tribunal to rule on individual detentions. The MHA 1983 was subject to an independent review in 2018, and the government responded to this in its white paper Reforming the Mental Health Act in January 2021. The government will bring forward legislation to update the MHA 1983 when Parliamentary time allows and will seek to strengthen the rights of people subject to it, particularly in terms of their right to have a say in the treatment they receive.
  3. The government intends these reforms to benefit people with a learning disability or autistic people, and explains this in more detail below. The MCA 2005 is designed to protect and empower people who lack the capacity to make their own decisions for example about their care and treatment. The MCA 2005’s Liberty Protection Safeguards (LPS), which will replace the current DoLS, are also discussed below.

Regulation

  1. The Health and Social Care Act 2008 sets out the functions of the Care Quality Commission (CQC) and includes the requirement for providers of regulated activities to register with the CQC. To ensure that the legislation performs its purpose in underpinning the safeguarding of individuals with care and support needs, CQC, as the independent regulator for health and social care in England, monitors, inspects and regulates services to make sure they meet fundamental standards of quality and safety. These standards, which registered providers of social care must meet, are set out in the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 and include the duty to provide person-centred care, to treat people with dignity and respect, only to act with consent, to offer safe care and treatment, to safeguard those receiving care and support from abuse and improper treatment, and to act on complaints. Failure to meet fundamental standards can be addressed by the CQC using its enforcement powers where it needs providers to make improvements in a timely manner and where there are risks to the health and wellbeing of service users. Inspection reports on individual providers are made publicly available.

Complaints

  1. Where individuals have concerns or complaints around the care and support, they are receiving, including where they believe their fundamental rights are not being taken into account, there are different routes to register a complaint depending on the service they are receiving. Where someone is not happy with their care, the government has been clear that they must be able to voice their concerns and have a complaint properly investigated. Encouraging a culture of feedback and learning is vital if services and people’s experiences of social care are to be improved.
  2. By law, all health and social care services must have a procedure for dealing efficiently with complaints, and anyone who has seen, or experienced poor-quality care has the right to complain to the organisation that provided or paid for the care.
  3. The Local Government and Social Care Ombudsman (LGSCO) is the independent complaints lead for adult social care and investigates complaints from those receiving social care. If an individual is not satisfied with the way a provider or local authority has dealt with a complaint, they may escalate it to the LGSCO. It does not matter if the care is provided by a council or paid for privately. Complaints can also be escalated to the Parliamentary and Health Service Ombudsman (PHSO). The PHSO make final decisions on complaints that have not been resolved by the NHS in England and UK government departments and other public organisations.

Enforcement

  1. In addition, regulations require all care providers to have an effective and accessible system for identifying, receiving, handling, and responding to complaints from people using the services or people acting on their behalf. While the LGSCO is independent from CQC, they work closely to share information where appropriate, for example if the Ombudsman finds things that might be a sign of a failure of standards. CQC monitor providers’ compliance with regulations, and how well a provider handles complaints, when looking at how responsive and ‘well led’ it is. The CQC’s actions are not usually in relation to any individual incident, as this is the role of the Ombudsman, but around identifying patterns of behaviour except for in relation to the most concerning matters, such as safeguarding.
  2. CQC has used the commonly agreed principles of fairness, respect, equality, dignity, and autonomy to develop its human rights approach to regulation, as well as the right to life and the rights of staff. Within its approach, the working definition of fairness extends to include the right to complain, the right for those complaining to have access to clear and fair processes for getting their views heard, and the right to have any complaint investigated and responded to. CQC also investigates complaints made by people detained under the MHA 1983.
  3. CQC monitors how well providers are ensuring the skills and competency of their staff in order to promote safeguarding of those receiving care and support. As part of their inspection regime CQC checks that care providers have effective systems to help keep adults safe from abuse and neglect. Where anyone alleges poor care, neglect or abuse, the government expects those providing the service and local authorities to take swift action to investigate. In a situation where there was a safeguarding issue CQC would be expected to refer concerns to the relevant safeguarding authority. CQC considers whether the provider has effective safeguarding processes and systems in place.
  4. CQC also encourages the public to “share their experience” through an online feedback mechanism which allows them to raise concerns about the services they receive from providers. Individuals can also provide feedback to CQC by phone, email or written letter. CQC reviews all concerns passed to them and can receive concerns anonymously via representative groups.
  5. CQC also recognises that some services inherently carry greater risks to the quality of care than others, for example some of those used by people with a learning disability and autistic people where people may be less able to speak up for themselves. CQC has also identified characteristics of services that are at risk of developing ‘closed cultures’- which can lead to harm, including human rights breaches and abuse. CQC knows that these risks can be evident in any service type, and CQC is vigilant in their monitoring of risk across all service types. CQC has issued guidance to Inspectors on closed cultures to highlight these specific risks and advise on how to respond, including carrying out inspection visits. CQC has taken action to tackle closed cultures by initiating focused inspections, issuing urgent notices to restrict admissions, placing services into special measures and, where necessary, ensuring people are relocated to other care services.
  6. CQC’s enforcement process is clear and timely, for adult social care services, in 2019-2020 CQC recorded 7,156 regulatory actions, the majority of these actions (6,097) were requirement notices, but it also issued 521 warning notices, took 367 civil enforcement actions and 171 criminal enforcement actions in relation to regulated activities. Due to the COVID-19 pandemic, in 2020/21, the CQC made fewer inspections as the CQC took a varied approach to inspections to lessen the burden of the process on health and care providers, focusing more on the collection of data and taking a risk-based approach to inspections.
  7. Where visiting concerns are identified, there is a process to rigorously review evidence so that swift and appropriate regulatory and enforcement actions are taken to ensure people are supported to have visitors. Since 1 December 2021, CQC has received visiting concerns regarding 226 services, of which 98 contained allegations of blanket bans. CQC has taken action in every case, including following up with providers, inspecting, raising safeguarding alerts where applicable and following up with local authorities.
  8. As the Departmental sponsor for CQC, DHSC carries out a quarterly accountability review. This accountability process is one example of a number of processes the CQC and the Department use to share emerging concerns about services the CQC monitors, assesses and regulates. 

Respect for individuals with care and support needs

  1. As part of the legal framework outlined above, local authorities have a duty to investigate safeguarding concerns under the Care Act 2014. Where a local authority has reasonable cause to suspect that an adult with care and support needs is at risk of or experiencing abuse or neglect and unable to protect themselves, then under Section 42 of the Care Act 2014, the local authority must carry out safeguarding enquiries. To aid them in this, local authorities can request that providers of social care, or anyone involved in the provider’s business, supply the authority with the information it needs to keep people safe. Local authorities should not limit their view of what constitutes abuse or neglect, as they can take many forms and the circumstances of the individual case should always be considered. Abuse or neglect in any form could constitute a breach of an individual’s human rights under Article 3 of the ECHR.

Safeguarding

  1. The government has made it clear in statutory guidance on the Care Act 2014, that local authorities must ensure that the services they commission are safe, effective, and of high quality. Safeguarding is not a substitute for providing care which meets these standards. The Care Act 2014 promotes a personalised approach to safeguarding which should be person-centred, and outcome focused. Practitioners in the health and social care sector should work with the individual to strike the right balance between protection and rights, and to safeguard them in a way that promotes choice and improves quality of life, whilst also keeping them safe from abuse and neglect. 
  2. Regulated providers also have a key role in safeguarding adults. All relevant professions are subject to employer checks and controls, and employers in the health and care sector must satisfy themselves regarding the skills and competence of their staff; the staff, in turn, should be vigilant about adult safeguarding, and share any concerns they may have.
  3. CQC monitors how well providers are doing this. As part of their inspection regime CQC checks that care providers have effective systems to help keep adults safe from abuse and neglect.
  4. The Care Act 2014 highlights the importance of partnership and multi-agency working in safeguarding adults from abuse or neglect. In exercising their specific safeguarding functions, local authorities must cooperate with each of its relevant partners (as set out in section 6 of the Care Act) in order to protect the adult. In turn each relevant partner must also co-operate with the local authority.
  5. Ultimately abuse is a police matter and prosecutions should be brought where this is warranted. The government stresses that any form of abuse or neglect is unacceptable, and wants to see a focused and effective safeguarding system, where harm or risk of harm is identified, acted upon effectively and ultimately prevented.

Over-medication in adult social care

  1. The government recognises the serious impact that over-medication has on people and is committed to working with the sector to better protect the health and human rights of autistic people and people with learning disabilities. It is estimated that on an average day in England, between 30,000 and 35,000 people with a learning disability, autism or both are taking prescribed psychotropic medication without appropriate clinical justification. Long-term use of these medicines puts people at unnecessary risk of a wide range of side effects including weight gain, organ failure and even premature death. This could be seen as being in contravention of their right to life, as well as their dignity; the CQC links this to ECHR Articles 3 and 8.
  2. National Institute for Health and Care Excellence (NICE) guidance states that the use of psychotropic medication should be the last resort for managing behaviour. Psychotropic medication should only be prescribed for managing behaviour which challenges when it is used in combination with psychology or other therapies.
  3. To reduce the use of psychotropics by autistic adults or adults with learning difficulties, the stopping over-medication with psychotropic medicines (STOMP) programme was established in 2016 by NHS England (NHSE), in conjunction with the Royal College of Nursing, the Royal College of Psychiatrists, the Royal College of GPs, the Royal Pharmaceutical Society, and the British Psychological Society. The programme drew heavily on a Public Health England study which documented prescription of psychotropic drugs by GPs in England. The programme is for children and adults of all ages who have a learning disability, autism or both, their families and professionals. The NHS Long Term Plan committed to the STOMP programme, which has now grown to include a number of social care partners. STOMP commissioned the Voluntary Organisations Disability Group to produce a social care pledge which has been signed by more than 250 social care providers who have committed to action on this.
  4. The programme aims to make sure that people only receive psychotropic medication for the right reasons and in the right amount, to improve understanding of medicines and alternatives to medication, and to ensure that people with learning disabilities or autism are involved in decisions about their health and treatment. The CQC principle of autonomy relates to individuals’ right to liberty (ECHR Article 5) and right to respect for family and private life (ECHR Article 8); by respecting individuals’ autonomy, and dignity (in the event that their wishes might not be known) their human rights are better protected.
  5. CQC considers medicines management within their key lines of enquiry for adult social care. CQC-registered social care providers are required to make sure that people’s behaviour is not controlled by excessive or inappropriate use of medicines. CQC advises providers to follow best practice recommendations and national guidelines, to assess people’s capacity to make their own decisions about medication (in line with the autonomy principle), to focus on the best interest of individuals while acting in a way that is proportionate, pragmatic, and safe, and to make sure staff are knowledgeable about psychotropic medicines. CQC also requires adult social care providers to report the numbers of people who have had their behaviour controlled or restrained by medicines in the provider information return.
  6. In addition, in September 2021, the government pledged to reduce overprescribing of medicines to the general population, following the publication of a government-commissioned review into overprescribing. The review acknowledged the STOMP programme and the importance of Shared Decision Making, where the clinician supports an individual to reach a decision about their treatment that is right for them, in line with the CQC principle of autonomy.

Independent Care (Education) and Treatment Reviews

  1. The government remains committed to ensuring that individuals with a learning disability and autistic people receive the right care and their human rights are protected, including those in long term segregation. In November 2019, the Secretary of State for Health and Social Care announced that people with learning disabilities and/or autism who are in long-term segregation would have their care independently reviewed. The aim of these reviews is to ensure that people with a learning disability and autistic people in the most restrictive settings are safe and consider the support required to move individuals to less restrictive settings and towards discharge (where appropriate). We know that some people with a learning disability and autistic people can experience long lengths of stay in inpatient settings. Providers should always assess and consider whether there is a suitable, appropriate, less restrictive option for those for whom they are caring, in order to uphold these individuals’ human rights. All social care providers have a duty to make reasonable adjustments for disabled people under the Equality Act 2010. This may include changes to the environment in which they are staying; this duty itself is anticipatory, meaning that providers must consider on an ongoing basis what individuals with their specific needs might need, and make adjustments accordingly, as well as considering whether they can be cared for elsewhere.
  2. Between November 2019 and September 2020 for people in long term segregation, 77 Independent Care (Education) and Treatment Reviews (ICETRs) were carried out, of which 36 were conducted virtually due to COVID-19 restrictions. The COVID-19 pandemic led to some delays, but DHSC worked with colleagues at CQC and NHE to develop a virtual process to ensure care continued to be reviewed for this group. Independent case reviews were conducted virtually between March and September 2020. ICETRs resumed in November 2021, and these are again taking place in person. These reviews help ensure that the individual needs of those in the most restrictive settings are being considered and help protect their human rights.

Protecting human rights during the COVID-19 pandemic

  1. The COVID-19 pandemic has had an unprecedented global impact that has severely affected public health, the economy and society. The government is aware that the spread of the virus has caused hardship for many people in the UK over a sustained period. This has been particularly difficult for those subject to additional restrictions, such as care home residents, who continue to be particularly vulnerable in the event of COVID-19 infection. Balancing different human rights where tensions arise, such as between residents’ right to family life (Article 8 ECHR) and right to liberty and security (Article 5 ECHR) against the right to life (Article 2 ECHR), freedom from inhumane or degrading treatment (Article 3 ECHR) and protection from discrimination (Article 14 ECHR) for all those who live and work in care homes and other care settings has been challenging. The government has in all cases sought to deliver a proportionate response to the pandemic, respecting human rights while protecting individuals and communities from the public health risks posed by COVID-19.

Care Act easements

  1. One example of this is the Care Act easements provision which was introduced under the Coronavirus Act 2020 in March 2020 to enable local authorities to streamline their Care Act assessment arrangements and prioritise care so that they could continue to meet the most urgent and acute needs in the face of COVID-19. The relevant provision expired on 16 July 2021 and is no longer in force.
  2. The government intended the easements provision to be used as narrowly as possible, and local authorities could only trigger easements when the workforce was significantly depleted, or demand on social care increased, to an extent that it was no longer reasonably practicable for it to comply with the Care Act 2014 duties. The easements provision was kept under review and terminated on expert clinical and social care advice as soon as possible. Guidance was clear that local authorities should continue to comply with pre-amendment Care Act provisions and statutory guidance for as long and as far as possible. The safeguarding duties set out in the Care Act continued to apply throughout the pandemic and were not affected by the Care Act easements provision.
  3. Local authorities remained under a duty to meet needs where failure to do so would breach an individual’s human rights under the ECHR. A report by the Association of Directors of Adult Social Services showed that local authorities used easements in limited ways such as using streamlined templates for assessments, conducting virtual assessments, and postponing or rescheduling reviews to a later date, but no local authority moved from the Care Act 2014 eligibility to a human rights threshold. The government also published guidance to support local response planning and decision-making in these challenging circumstances, reinforcing that consideration of any potential harm that might be suffered, and the needs of all individuals, are always central to decision making.

Visiting in residential care settings

  1. The government recognises that visiting restrictions have been particularly challenging for people receiving care and support in residential settings, including older adults, those with dementia, learning disabilities and/or autism, as well as for their families. Maintaining opportunities for visiting is critical to supporting residents' health and wellbeing and ensuring meaningful relationships with friends and families.
  2. The government notes its duty to protect and promote care home residents’ rights to their private and family life (Article 8 ECHR) and their right to liberty and security (Article 5 ECHR). However, in doing so, it has also sought to balance these rights against other competing rights and freedoms, including the right to life (Article 2 ECHR) and protection from discrimination (Article 14 ECHR). The government has had to make careful judgements based on expert clinical advice and taking account of the Public Sector Equality Duty (PSED) under the Equality Act. These judgements balanced these rights to enable residents to have meaningful visits with their families and loved ones while ensuring that residents are protected, as far as possible, from infection and harm from COVID-19.
  3. Given the specific vulnerabilities of care home residents, care home visiting policy has been more restrictive than before the pandemic. This is because older adults, disabled people, and people with learning disabilities are more likely to suffer serious illness or death from COVID-19 pandemic compared to the general population. As set out in the Green Book chapter 14a, evidence from the UK indicates that the risk of poorer outcomes from COVID-19 infection increases dramatically with age in both healthy adults and in adults with underlying health conditions. Those over the age of 65 years have by far the highest risk, and the risk increases with age. Analysis published by the Nuffield Trust highlighted that residents in care homes for older adults have been disproportionately affected by the COVID-19 pandemic; earlier in the pandemic, hospitalisation data indicated that approximately 40% of COVID-19 hospital admissions related to patients aged 75 years and over, and the rate of hospital admissions and death in those who tested positive for COVID-19 continues to be highest among the over 75s compared with other age groups.
  4. There is also evidence that working age care home residents may be at higher risk from COVID-19 infection. The Green Book also includes a list of clinical risk groups; people who are immunosuppressed, or have specific other conditions, for instance Down’s syndrome, have a reduced ability to fight infections and other diseases, including COVID-19, and are deemed to be at higher risk. In the light of this evidence, the government has published guidance on visiting throughout the pandemic to enable safe visiting in care home settings for residents and their loved ones, in a manner proportionate to the risk of transmission, with clinical evidence carefully considered and balanced against evidence around the negative effects of isolation or lack of visiting on residents in care homes.
  5. Visiting restrictions during the COVID-19 pandemic have included limits on the number of visitors inside care homes, and the requirement for residents to isolate following defined visits out of the care home, when they are COVID-positive, and during outbreaks. Care home visiting guidance was first introduced in July 2020, and care home visiting was subsequently paused in line with national restrictions and tiers until guidance was updated to enable one visitor per resident in March 2021. With the exception of visiting restrictions during the Omicron wave in December 2021, there has been no limit to the number of visitors in care homes since July 2021. The government has sought to ease restrictions as soon as clinical advice indicated that it would be safe to do so. As of 4 April 2022, residents will still be required to isolate when they test positive for COVID-19, and during outbreaks, but no other restrictions will remain.
  6. Outbreak management processes are a longstanding public health measure which predate the COVID-19 pandemic and the UK Health Security Agency (UKHSA) keep outbreak control measures under constant review. 
  7. In March 2021, the Department of Health and Social Care introduced guidance to enable residents to nominate a family member or friend to be their ‘essential care giver’. This enabled residents to have a visitor in all circumstances, regardless of self-isolation or outbreaks. When the guidance for essential care givers was first introduced, it allowed for residents with higher care needs to have a relative or friend visit to offer support with personal care needs. However, the guidance was broadened in June 2021 so that all residents could nominate an essential care giver to provide companionship and help with care needs. Essential care givers can visit inside the care home, including during an outbreak, unless they have tested positive for COVID-19.
  8. While the vast majority of care recipients are vaccinated, these individuals are still at a greater risk of hospitalisation and death from COVID-19. The transmission risk remains high in care homes due to their closed nature and the colocation of vulnerable people. There is also evidence of prolonged infectiousness in older people, which means different measures are needed.

Deprivation of Liberty Safeguards (DoLS)

  1. The government recognised that the pandemic was challenging for adults who lacked the relevant mental capacity to consent to their own care and treatment, their families and those that worked with them. As a result, DHSC produced guidance for professionals who were caring for or treating these people.
  2. The Department worked closely with experts, including the National Mental Capacity Forum, to produce the Mental Capacity Act (MCA) 2005 and DoLS guidance during the COVID-19 pandemic. Updated versions of this guidance covered key topics, such as providing the vaccine to someone who lacks the relevant mental capacity and testing someone without their consent, and incorporated feedback from health and social care stakeholders, including from people with lived experience.
  3. Whilst the COVID-19 guidance was withdrawn in August 2021, the Department has continued to remind stakeholders that the principles of the MCA and DoLS still apply, as they did before and during the height of the pandemic, and that certain decisions may need to still be made in relation to caring for or treating COVID-19 for someone who lacks the relevant mental capacity. This may include offering a vaccine or carry out remote assessments, where applicable.
  4. The DoLS are the legal framework for ensuring that where an adult is being deprived of liberty or where this being proposed, and they lack capacity to consent to those arrangements, they have access to these necessary safeguards. A hospital or care home must apply to a local authority for authorisation of a deprivation of liberty on their premises. The DoLS process exists to protect the rights of people who are deprived of their liberty, or where this is proposed, and for example, provides for a right to advocacy in some cases.

Autism

  1. In response to anecdotal evidence we were hearing from autistic people and their families during the beginning of the COVID-19 pandemic, DHSC commissioned the Policy Innovation and Evaluation Research Unit (London School of Economics) in summer 2020 to undertake rapid research to improve our understanding of autistic people’s experiences during the COVID-19 pandemic, and our ability to take appropriate actions to support people. The Department received initial findings in December 2020, and this informed our approach in regard to safeguarding autistic people and their families’ human rights and ensuring they were not being disproportionately impacted by the COVID-19 pandemic.
  2. The final report was published in July 2021, and showed that the COVID-19 pandemic exacerbated challenges many autistic people already face, such as loneliness and social isolation and anxiety. While it found that reasons for this vary, it is likely that some autistic people struggled with restrictions and practicing infection control measures. At the same time, the research also showed the benefits of lockdowns for some autistic people, who have been better able to engage in virtual spaces. In relation to social care and care homes specifically, the rapid research found that generally issues were similar to other populations who rely on social care, including the availability and effectiveness of personal protective equipment (PPE) and testing of residents and staff for COVID-19. In addition, it found that the size and layout of care settings, staffing patterns and levels of infection in surrounding community had an impact on the prevalence of COVID-19 and autistic people’s experiences. The research also found that restrictions on visits to residential care settings had an impact on autistic people, particularly not being able to follow usual routines which could contribute to loneliness and/or social isolation.
  3. One of the key specific issues for autistic people in relation to social care was the impact of PPE for some autistic people who struggle to wear face coverings or being supported by someone else who was wearing a face covering. The Department’s new national autism strategy, published in July 2021, takes into account the impact of the research that was conducted into the impact of COVID-19 pandemic on autistic people and their families’ lives. It shaped the priorities for the strategy, and the actions that the Department will be taking during the first year of the strategy throughout 2021/22.

People with a learning disability

  1. The government recognised that some people with a learning disability faced health inequalities during the COVID-19 pandemic. Some people with a learning disability were found to face an increased risk of severe outcomes from COVID-19, which is why people with Down’s syndrome were added to the clinically extremely vulnerable list and both people with Down’s syndrome and those on the GP learning disability register were prioritised for vaccine roll-out.
  2. To further the Department’s understanding of the challenges faced by people with a learning disability during the pandemic, DHSC commissioned the University of Warwick and Manchester Metropolitan University to undertake the Coronavirus and People with Learning Disabilities Study. The study tracked the experiences of people with a learning disability throughout the pandemic via interviews and surveys, enabling the government to understand the impact of COVID-19 on the wellbeing and lives of people with a learning disability. 
  3. The study started in September 2020, with three ‘waves’ of data collection up until August 2021. Areas of focus included access to health and social care services, mental health and wellbeing and digital inclusion. A policy briefing was also published in February 2022 in collaboration with Learning Disability England (LDE) and PMLD Link which set out key findings from the research.
  4. A further fourth wave study has been commissioned to understand the recovery phase from the COVID-19 pandemic and inform policy decision-making.

Continuing to improve care and support

  1. The government recognises the real lived impact that the COVID-19 pandemic has had on many individuals in this country who have care and support needs, and whose way of life was forced to change due to the pandemic. As the country moves forward, the government is determined not to leave anyone behind, and are working on multiple elements of growth and reform to improve the lives of those receiving care and support. The government will continue to consider how public health and safety can be achieved with the minimum number of restrictions or requirements on people’s lives, and respecting people’s human rights is at the forefront of this.

Local authority assurance

  1. While the government believes the system in place is adequate, the Health and Care Bill intends to further improve how we ensure that the rights and wellbeing of those receiving care and support are protected.  The Bill will introduce a new duty for the CQC to assess local authorities’ delivery of their adult social care functions under Part 1 of the Care Act 2014. These assessments will provide a greater understanding of practice and provision at local level, making it easier to see what is working well and make good practice, positive outcomes and outstanding quality easier to spot and share nationally. It is expected to include assessment of how local authorities maximise the effectiveness of people’s care and treatment by assessing and reviewing their health, care, and wellbeing which is fundamental to the realisation of peoples’ human rights. The government also anticipates the CQC assessing other local authority responsibilities related to safeguarding, such as duties to investigate safeguarding concerns where an adult with care and support needs appears to be at risk of abuse or neglect and unable to protect themselves, and to establish Safeguarding Adults Boards (SABs).
  2. Our ambition is for the CQC to use its powers and duties to help improve outcomes for people who draw on care and support, by assessing how local authorities are meeting individual’s needs. In order to make these assessments, the CQC will need to look at a range of local authorities’ activities. This may include how a local authority is carrying out its safeguarding duties.
  3. It is the Department’s intention that where these assessments identify a persistent and serious risk to people’s wellbeing, the Secretary of State may act to secure improvement, including through new powers of intervention.
  4. The Department and the CQC will work closely with local authorities, people who draw on care and support and other stakeholders to develop an assurance framework that is fair, transparent and robust, alongside more support tools to enable local authorities to improve performance as needed.

Workforce

  1. In December 2021 the government released a white paper People at the Heart of Care outlining a vision for the adult social care workforce whereby people experience a supported and rewarding career, where they are recognised for the vital work they do, and feel their wellbeing is prioritised. Backed up by at least £500 million to develop and support the adult social care workforce over the next three years, this will support our commitment to ensure that those who receive care are provided with choice, control, and support to live independent lives; that they receive outstanding quality and tailored care; and that people find adult social care fair and accessible.
  2. The package of reforms includes the co-production of a universal Knowledge and Skills Framework (KSF), building on existing and emerging frameworks for the workforce, and working with the Department for Education in its development. This national framework will become an accessible articulation of the knowledge and skills required for roles within the sector and set out clear pathways for career progression. The government will also invest in hundreds of thousands of training places and certifications to enable the workforce to develop and progress within the KSF now and in the future, building on existing skills and expertise.
  3. Investment in a portable Care Certificate is also a key part of the government’s offer as announced in the white paper. The Care Certificate is a package of induction training intended to be completed within the first 12 weeks of starting a new role in health or social care. Standard 4: Equality and Diversity includes expectations of understanding on the following legislation: the Equality Act 2010, the Human Rights Act 1988, the MCA 2005 and the Care Act 2014.
  4. Registered professionals, social workers and occupational therapists all must adhere to their own set of professional standards. The professional standards are the threshold standards necessary for safe and effective practice. They set out what a registered professional in England must know, understand and be able to do after completing their education or training. These specify that the interests of service users and carers must be promoted and protected. Social Work England's professional standards detail that social workers must respect and promote the human rights, views, wishes and feelings of the people they work with, balancing rights and risks and enabling access to advice, advocacy, support and services.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions

  1. In the early stages of the COVID-19 pandemic we were made aware of concerns about inappropriate applications of DNACPR orders. To mitigate this, NHS England and Improvement (NHSEI) clinical leaders issued a number of statements and letters to health and care providers to reiterate that DNACPR decisions must not be applied in a blanket fashion. These statements emphasised that decisions on DNACPRs are to be made on an individual basis and that it is unacceptable for advance care plans, with or without DNACPR form completion, to be applied to groups of people of any description.
  2. Alongside this, the 2020/21 General Medical Services (GMS) contract Quality and Outcomes Framework (QOF) included a requirement for all DNACPR decisions for people with learning disabilities to be reviewed.
  3. In October 2020, the Department asked CQC to review how DNACPR decisions were used during the COVID-19 pandemic, building on concerns that CQC had reported earlier in the year. The CQC conducted this review between November 2020 and January 2021 and their report was published in March 2021. Although they found some examples of good practice, they also found that there were inconsistencies in approach, language, communication and understanding of DNACPR decision making and the wider context of advance care planning.
  4. This report included a recommendation for a consistent national approach to advance care planning. DHSC set up a Ministerial Oversight Group to provide assurances that progress was being made towards implementing the recommendations of that report.
  5. In March 2022, a guidance document on the Universal Principles for Advance Care Planning was jointly published by a coalition of partner organisations. Its intention is to facilitate a consistent national approach to ‘what good looks like’ in advance care planning in England from the perspective of all involved and in clear alignment with human rights law and the Mental Capacity Act 2005, to help ensure that people are supported as partners in their personalised care across the health and social care system.

Reform of the Deprivation of Liberty Safeguards (DoLS) system

  1. The DoLS are an important set of safeguards that were introduced in 2009 and are part of the MCA 2005. They align with Article 5 of the ECHR, aiming to guarantee the right to liberty and that no one should be deprived of their liberty on an arbitrary basis. Following the Cheshire West court ruling in 2014, the definition of what constitutes a deprivation of liberty has in effect widened, and so did the number of cases local authorities had to assess, leading to a backlog in cases. Due to this backlog, and inefficiencies in the system, the government commissioned the Law Commission to review the DoLS. Following this review, the Government introduced the LPS to replace the DoLS through the Mental Capacity Amendment Act 2019. The implementation of LPS is subject to consultation, which was recently launched.
  2. The LPS were introduced in the Mental Capacity (Amendment) Act 2019 and will replace the DoLS system. They aim to deliver improved outcomes for people who are or who need to be deprived of their liberty. They have been designed to put the rights and wishes of those people at the centre of all decision-making on deprivation of liberty. One aim of the LPS is to help local authorities handle the number of cases they may receive, by giving NHS Trusts and Clinical Commissioning Groups (CCGs) a role in arranging assessments and authorising arrangements, sharing the administrative burden and bureaucracy.
  3. The LPS will provide protection for people aged 16 and above who are or who may need to be deprived of their liberty in order to enable their care or treatment to be provided, and who lack the mental capacity to consent to their arrangements. People who might have an LPS authorisation include those with dementia, autism and learning disabilities who may lack the relevant capacity.
  4. The government believes that it is paramount for implementation of the LPS to be successful, so that the new system provides the safeguards needed. A public consultation, lasting 16 weeks, on these important reforms began on 17 March. The government plans to take time to consider the detailed responses carefully once the consultation closes, before making final decisions about the design of the LPS and plans for implementation, including any new implementation date. 

Mental Health Act Reform – learning disabilities and autism

  1. The government intends to introduce once in a generation Mental Health Act reforms to help people have greater control of treatment and receive the respect they deserve, including for people with a learning disability and autistic people. These reforms will help support the human rights of these individuals by helping to reduce unnecessary hospital admissions and supporting people to live in their community.
  2. Reforming the Mental Health Act will help to ensure that when someone is admitted to hospital, the care and treatment they receive is therapeutic and beneficial and will have a positive impact for all, including people with a learning disability and/or autistic people who are admitted for assessment or treatment.
  3. Under the government’s proposed reforms, a person with a learning disability or an autistic person will only be able to be detained for treatment under section 3 of the Act if they have a co-occurring mental health condition which will benefit from inpatient treatment. Where a person is detained under certain provisions of the Act, the Government is looking at how recommendations from Care, (Education) and Treatment Reviews (C(E)TRs), could be placed on a statutory footing, meaning that they must be taken into account as part of someone’s Care and Treatment Plan. Finally, there will be duties on commissioners to understand the risk of crisis at an individual level in their local area and ensure an adequate supply of community services.
  4. We published the government’s response to the public consultation on the Reforming the Mental Health Act White Paper in July 2021. This set out broad support for the reforms, and it identified areas for further consideration as we develop a Mental Health Bill to amend the Act. The government will bring forward this legislation when parliamentary time allows.

Reform

  1. Alongside this range of measures to further protect human rights in social care, the government has also announced an ambitious, wide-ranging reform package for adult social care, with £5.4 billion of investment over three years. The white paper, People at the Heart of Care, set out a 10-year vision for adult social care, and creates a foundation for further strengthening human rights for all who draw on care and support. The government believes care and support should be bespoke to individual needs, building on their strengths and enabling them to achieve the outcomes that matter to them. We want to ensure care is safe, responsive and respects human rights, all of which are pivotal of delivering our vision of outstanding quality care.

 

12/04/2022