Evidence gathered from: Our work with Advocates and Campaigners working in health and social care during Covid-19
BIHR welcomes this opportunity to provide evidence to the JCHR as part of its inquiry into the human rights implications of the Government’s response to Covid-19. Our policy responses are directly informed by people’s real-life experiences of the issues, drawn from our work to support people to benefit from their human rights in their daily experiences. Our key findings are summarised below:
- Over 65% of advocates and campaigners who responded to our call for evidence told us that it has been more necessary to use human right to challenge poor practice during Covid-19.
-Over 45% of advocates and campaigners who responded to our call for evidence told us that they did not think that the specific characteristics or needs of the people they support (for example, but not limited to), disabilities, mental health or capacity issues, race or ethnicity, age, gender were not considered when decisions were made. Over 27% believed that specific characteristics were considered but in a negative way.
-50% of advocates and campaigners who responded to our call for evidence told us that during Covid-19 there was no clarity about which law was being used to allow for a change of care and support.
-Over 43% of advocates and campaigners who responded to our call for evidence told us that where changes to care and support were made during Covid-19, people were not told by the service changing their care where they could raise an issue.
The initial Coronavirus Act was passed very quickly, and UK government has issued both law (Regulations) and guidance at speed, often with conflicting or confusing public messaging. There are some welcome references in the Coronavirus Act which make it clear that decisions to change care and support should not be incompatible with human rights. However, this was not accompanied by measures to enable people to understand what these human rights are and ensuring that frontline workers know how to make rights respecting decisions. Thus there are two elements to accountability for the responses to Covid-19: a) central Government’s response through law, policy, guidance and resourcing; and b) the implementation of these responses at local level, and therefore people’s everyday experiences of risks to their human rights.
The British Institute of Human Rights is a charity working in communities across the UK to enable positive change through human rights.
We work with three main groups across the UK.
1) People accessing (or trying to) access services, their family members and people that care about them.
2) Formal advocates (e.g. IMCA, IMHA, etc.), self-advocates, and other community, campaigning, and advocacy groups.
3) People with legal duties to respect and protect rights. Including those working in public services and those working in private, charitable, or voluntary bodies delivering public services.
BIHR’s evidence submission:
Since March 2020 our work has specifically focused on the impact of Coronavirus law and policy on people and its implementation through local decision-making. Across the UK, we have worked with over 400 people accessing public services including their families and those who care about them and over 950 people working in health and care services including advocates and campaigners.
The evidence gathered through our work informs our main concerns and suggestions for the steps that need to be taken to ensure that measures taken by the Government to address the Covid-19 pandemic are human rights compliant.
We have prepared an evidence submission for each of the groups we work with, so that the Committee members have access to the direct experiences of all three groups when considering the Government’s response. This submission focuses on the experiences of advocates and campaigners. For the purposes of this JCHR report, the data will be shown as UK wide. We will be submitting nation specific data to devolved inquiries where appropriate.
Important demographics to note when considering the evidence contained in this report:
As a human rights organisation, we ourselves use a human rights approach. We have used the PANEL human rights framework endorsed by the United Nations in our evidence gathering and as the structure of our submission. We take each principle in turn, sharing people’s experiences and in doing so answer the questions the Committee is seeking views on through the lens of human rights.
Click on the headings below to read the evidence for each human rights principle.
In order for the measures taken by the Government to address the Covid-19 pandemic to be human rights compliant: People must be involved in decisions that affect their rights.
Autonomy is covered under Article 8 of the European Convention, brought into UK law in the Human Rights Act 1998 (“HRA”), which also includes the legal duty on public authorities to respect and protect this right in their everyday functions.
In people’s daily lives, this means that changes to care and support should be discussed with the individual, their family or other chosen person. Where the person has been assessed as lacking capacity to make specific decisions about care (or changes), the safeguards under the relevant capacity legislation must be met. These safeguards include, encouraging and enabling participation, considering past wishes and feelings, consulting anyone named by the person and much more.
What did advocates and campaigners tell us about participation during Covid-19?
We asked, “Since the start of Covid-19 have the people you support been involved in decision-making affecting their care and support?
We asked, “Since the start of Covid-19, when decisions have been made about the people you support's care and support were they told why this decision was made and for how long it would last?”
BIHR recommendations for ensuring participation:
- The Government, both centrally and locally must make it entirely clear that all legal duties under the Human Rights Act remain in place regardless of Emergency Coronavirus legislation. This includes the right to autonomy (having a say over your care) under Article 8 (HRA).
- It must be made clear that where a person’s participation in decisions about their care and support is restricted, this restriction must follow the 3-stage test of lawful, legitimate, and crucially proportionate (the least restrictive option possible).
- Clarity must be provided around the use of Emergency Powers, it must be made clear that where any changes are made to a person’s care and support, the person and their chosen family/friends (those who will be impacted) must be supported to be involved in decision making. Easements must be applied compatibly with human rights law.
- All public officials must be supported to recognise and respond to a situation in which a person’s legally protected human rights are at risk. This is necessary during Covid-19 and beyond.
In order for the measures taken by the Government to address the Covid-19 pandemic to be human rights compliant: There should be monitoring of how people’s rights are being affected, as well as remedies when things go wrong.
The section 6 HRA duty places a legal duty on public officials (and those delivering a function of a public nature) to respect, protect and fulfil human rights. This duty is about every decision frontline staff make, the policies and protocols put in place by managers, and the strategic decisions of leadership. This does not change under Coronavirus law and policy.
What did advocates tell us about accountability during Covid-19?
2.0 We asked, “When a decision has been made about the people you support's care or support did staff or the organisation providing that care and support tell them about how they could challenge this decision or raise an issue about it?”
2.1 We asked, “When the people you support have raised an issue or challenged a decision was this reviewed or addressed by the staff or organisations providing the care and support (or another organisation they complained to)?”
We asked, “Do you feel able to raise a concern or challenge with staff about the people you support human rights when decisions are being made about their care and support?”
BIHR recommendations for ensuring accountability:
- There must be open and accessible processes for people, their families and those who care about or support them (such a advocates) to raise issues with care and support during Covid-19.
- Where there have been changes to complaints processes as a result of Covid-19 these must be the least restrictive option available to the public service (i.e. there cannot be a blanket suspension of complaints procedures, this is not a proportionate response). Advocates must be informed of new processes (i.e. a move online) to enable them to ensure the people they support have their voices heard.
- There must be clear avenues and processes for advocates to raise issues they are facing when trying to uphold human rights during Covid-19.
- Information about the Emergency Powers being used at local level should be monitored locally and centrally via a robust procedure. People working in advocacy and campaigning must be consulted about their experiences. This enables informed decisions to be made about the continued availability of the Powers. In doing this, the Government can identify trends and concerns, including human rights flash points during the pandemic, as well as positive practice which others can learn from.
In order for the measures taken by the Government to address the Covid-19 pandemic to be human rights compliant: Both direct and indirect discrimination must be prohibited, prevented and eliminated. People who face the biggest barriers to realising their rights should be prioritised.
Article 14 in the Human Rights Act sets out that the enjoyment of rights and freedoms must be secured without discrimination on any grounds, including but not limited to sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status. Importantly, and differently to the Equality Act, this encompasses discrimination beyond the nine protected characteristics, and recognises discrimination based on combined or multiple factors, such as having Autism and living in a residential unit or being an older person and living in a care home.
What did advocates and campaigners tell us about discrimination during Covid-19?
We asked, “Do you think those making decisions about care and support during Covid-19 considered the specific characteristics or needs of the people you support? This could include (but is not limited to) considering any disabilities, mental health or capacity issues, race or ethnicity, age, gender or other characteristics or needs.”
We asked, “Do you believe any of the above issues, that the people you support have experienced, were also about treating them worse than other people because of a particular identity or characteristic they have?”
What did advocates and campaigners tell us about which groups are affected by measures?
BIHR evidence gathering has highlighted concerns of direct and indirect discrimination impacting the following people: from our wider work we know that this list is not exhaustive and will be publishing more expansive data.
BIHR recommendations for ensuring non-discrimination:
- The Government must ensure that all public officials are fully trained, resourced and supported to practically implement their legal duties under both the Human Rights Act (1998) and the Equality Act (2010).
- The Government must make it entirely clear that these non-discrimination legal duties have not changed as a result of Covid-19, and to ensure that their actions responding to Covid-19 are not discriminatory in themselves.
- Where the Government has knowledge that discrimination has occurred (i.e. through this evidence call) this should be independently investigated, using human rights as the central framework and remedies put in place.
In order for the measures taken by the Government to address the Covid-19 pandemic to be human rights compliant: Everyone should understand their rights and be fully supported to take part in developing policy and practices which affect their lives.
What did advocates and campaigners tell us about empowerment?
We asked, “Since the start of Covid-19, when a decision is being made about a person you support's care and support have decision-makers told them about their human rights in this situation?”
We asked, “Do the people you support feel able to raise a concern or challenge with staff about their human rights when decisions are being made about their care and support?”
BIHR recommendations for ensuring empowerment:
- The Government communications about Covid-19 (and beyond) should be centred in human rights. Thus far there has been very little evidence of this, even though the main responses to the pandemic focused on rights-restricting measures.
- All public officials must be trained, resourced and supported to embed human rights law in every interaction and to involve people in those discussions and decisions.
- People must be provided with easy to access, accessible information that enables them to understand their rights during Covid-19.
- The Government must make it clear that everyone in the UK has human rights protected in law, that these are relevant to their everyday interactions with public authorities, with clarity on which rights can be restricted (the process for doing this lawfully, legitimately and proportionately) and which can never be restricted even during a pandemic for example, the right not to be tortured or treated in an inhumane of degrading way (Article 3, HRA).
In order for the measures taken by the Government to address the Covid-19 pandemic to be human rights compliant: Approaches should be grounded in the legal rights that are set out in domestic and international laws.
Domestically we have 16 rights under the HRA. Some of these rights can be restricted in certain very specific circumstances for example, to protect the individual or the wider public from harm). Where this has been the case during Covid-19, any restrictions have to be applied lawfully, for a legitimate aim and in a way that is proportionate to the risk. Other rights within the HRA, such as the right to life can never be lawfully interfered with by the state, that remains the case during Covid-19.
What did advocates and campaigners tell us about legality?
We asked, “Since the start of Covid-19, if a decision is made about the care and support of a person you support, were they told which law allowed this change?”
5.1 We asked, “Since the start of Covid-19, if a decision has been made about the people you support's care and support were they made aware that their legal rights under the Human Rights Act have NOT changed in this time?”